Do Not Go Gentle — Poetry & Cancer, Life & Death

AFTERMATH: Life WIthout My Brother and MOM

2010-12-20T09:23:00.007-07:00

THE AFTERMATH Holidays without Scott and Mom

I still can’t imagine my life without my brother and Mom being an
every day part of it. I know it is real, as real as it has been,
for the last eleven months. The knot in the pitt of
my stomach is a constant reminder.

It has been almost a year since Scott passed away.
I guess for the most part, I am doing ok; functioning, getting up in the morning
going about, and doing, what appears to be my life.
Yet, there are times when the "two-by-four" feeling and thud, strikes
me with a blow and force, that knocks me down on my
emotional ass. I stay there for a while and think and wonder...
The shock and emptiness of it all. The harsh, tragic realities that happen,
in this thing we call life.

As much as I sit here, stagnating, thinking and wondering,
I already know what they want me to do.
Stand up, shake myself off,
and get on with things; my life. LIVING.
That is what Scott asked of and wished for me,
mere hours before he died.
Not distracting myself from the pain and emptiness I feel-
but how to live and carry on inspite of it.

Scott believed that distraction is an activity that averts
our eyes from seeing what is really happening, all that is REAL.
Yes, I am a grieving sister and daughter, yes, the loss of my brother and mom
will follow me wherever I go.
I won’t distract myself from the pain that surrounds me.
I will follow their lead-
and LIVE.
Enjoy and be grateful, for all that I have.
The family and friends I have been
so richly blessed with.
Grateful for those who love and care for my brother and Mom.

Be grateful for even the mundane.
They were.

loves and hugs.
I, we, all miss you so very much.

love,

Slarry

Plagiarizing, Copyright Laws and Permission

2010-03-22T19:14:00.002-06:00

Monday March 21, 2010

To who it may concern:

This is to inform the "anonymous" person or persons PUBLICLY,
That this blog, written by my brother, Scott H Swaner belongs and is entrusted to me, Sheri Swaner, the Administrator.

ALL Comments, posts anything and everything written from the day Scott began this blog: donotgogentle.blogspot.com
Poetry and Cancer
are copyrighted. NONE of his posts, or mine, the one's following his death,
are to be used or borrowed for monetary or non-monetary gain or purposes
without consent from me, ever.

I have noticed that the font has been changed, worse still, many "comments" have been deleted from his blog, especially
his posts during the months he was dying of pancreatic cancer.

Please be aware that this will NOT be tolerated and you will be pursued, fined and contacted with and by every legal
authority possible.

I hope this is clear.

The "comments" are part of Scott's story. It is a story and blog of purpose, love, hope, family friendship loss and suffering.
It is filled with a unique voice of a brilliant,
dying man confronting a foreshortened life.
Who do you think you are to trifle with, taint, plagiarize or alter his blog?

Please realize you will be punished and pursued until this matter is rectified.

If you have any questions I can be contacted through the blog
and by email: sschapin50@gmail.com

Sincerely,

Sheri Swaner
Blog Administrator donotgogentle.blogspot.com
Sister

Another Blue [Ink] Day of Cancer

2010-02-20T10:18:00.013-07:00

Saturday, February 20, 2010

Saturday, January 16, 2010

JUST ANOTHER DAY ... (not really)

Sheri Swaner to Joanne 10/10/2009

HI and greetings.
I am forwarding an email I received from Dr. David McCann, Scott's mentor, professor and dear friend.
David and Scott remained close long after Scott's graduation from Cornell and Harvard; both experts in their ability
to translate the Korean language and their shared gift of the poetic and written word.

David was also a frequent blogger on Scott's blog; supporting, caring, sharing and loving him through his nine months
of fighting against Pancreatic Cancer.

Dr. McCann was recently diagnosed with Prostate Cancer, as he states in his kind and eloquent email.
I am so sick of cancer--and the many people I love and care for having to fight against this insipid
and senseless disease; all diseases and illnesses, (far too frequently)
that threaten the lives of those I (we) love.

David also attached a poem he wrote about Scott. It is beautiful and telling of the friendship they shared;
also, their fondness for fountain pens, ink and fine, wanting to be written on, high quality paper.
Paper that makes one drool and elicits, inspires one to be moved, inspired to write.

Scott gifted many of us with ink, pens, journals and great books --
the tools that symbolize, personify some of what he did; the passion
of an expressive and gifted writer and the words that touch, move and impassion us.

I want to share and pass this on to those who know David, either personally,
or through his association of knowing our brother and friend-
This and his beautiful posts and writings on Scott's blog. Whew!

I will remain in contact with David, supporting and caring for him, as he did Scott.
He is such a good, talented man. Both of them are.

Loves and best wishes to all of you.

Sheri
sschapin50@gmail.com

The poem is attached, titled: BLUE INK. It is also part of one of David's recently published book of poetry,
entitled: _Sijo_.
Yes, it is published and this particular poem, dedicated to Scott.
(yes, to those that are plagiarists- It, is copywrited. ; ) Ya, goofballs.

http://www.boston.com/lifestyle/articles/2009/06/30/
the_sijo_poetry_form_captures_a_harvard_professor8217s_imagination/

Reminding me once again, though I don’t need to be, just how much:

Cancer Sucks!

sas

From: David
Date: October 7, 2009, 10:35:52 AM MDT
To: Sheri Swaner
Subject: Re: sijo, Kudos and Scott Swaner

Dear Sheri,

Thanks for your message. I apologize for the delay in replying, but I've been
in sort of a rough patch. It turns out I have prostate cancer, and will be
having an operation on Friday next week. Trying to figure out the treatment
options and such has been a challenge. It does make me think of Scott, of
course; and I've written some other poems about him. I'll attach one sequence
of sijo...

I will hope to be sort of back in stride in a month or so. They say 4-6 weeks
to get going again, and then some interval even after that for the full
recovery. Let's keep in touch.

With all best wishes,

David

Blue Ink

This ink is blue, though you can’t know
that if you read this in a book,
nor that this ink in a bottle
was given me by a colleague
formerly at U Dub, Seattle,
up the hills from the waters

of the Sound, where one can see
on any day boats as they pass
bound in, away, a metaphor
for the traffic, our commerce, life.
His life stopped near three years ago,
the in and out of his breath.

Yesterday I found an old pen
and cleaned it, soaking, wiping,
twisting the screw control, ink
drifting away from the nib
overnight. Then I made it drink
a barrel full, my friend’s ink.

And I sit here on the couch
writing in this deep blue ink
across the white notebook pages,
anticipant of my own course
of treatment, hoping, ill or well,
to write the end with his gift.

--- David R. McCann

One Reply: Joanne Lee (Scott’s Birth mother)
A very fine writer, herself, and someone I am forever grateful to
for “the gift,” the blessing of Scott.

Joanne Lee to me

10/10/09

Hi Sheri,

Thanks for the poem. Yes, Scott - pens, ink, paper. Of course I didn’t know that about him in the beginning.
Well, not the beginning beginning but the middle beginning. Our beginning. I sent him moleskin notebooks while he was in Korea.
He wanted to know how I knew. He seemed slightly embarrassed by his notebook fetish. I have it, too.
Nothing to be embarrassed about, I said. I shopped pens for him but never bought one.
The ones I wanted for him (for me)? were hundreds of dollars.
Carved. Fine metals. Sleeping smugly in their padded beds.
For years I have had beautiful small potent bottles of colored inks.
They sit, waiting in my art studio. Waiting. For what?
They are so full of that potent beauty that I have never wanted to ask more of them.
Never wanted to stretch their beauty out across a page.
To dilute it. Isn’t it enough to be beautiful in that small potent way?
And paper. I still lust for paper. Collect it. Stack it. Fondle it.
And sometimes, even use it. Splash paint across it.
Frame it under glass – though by then it plays second fiddle.
Melting behind the narcissistic image. Holding space.
Letting its beauty be usurped.

How is it that the very mention of Scott, the memory of Scott brings poetry out of us?
That he lives on in the pens and ink left behind.
Maybe I will buy one of those outrageous pens.
And invite Scott’s spirit to dwell there. In its padded bed.
Close.

Sweet Sheri. Thanks for being you.

Naturally,

Joanne

CONCRETE MEMORIES

For: Tiffny , who brought me back to Life.
My Thanks, gratitude and love, always.

Bright Petaled-roses
Scattered on frozen concrete,
Your name
(life)
Etched and scrolled
Lay frozen on the ground.

Were you there?
Cross-legged
Sitting, waiting for a glance?
Perhaps a chance
To meet
To greet
“Yes,”
She is the one I talk with you about?
The “she”
that makes the corners of my mouth
Turn Up-wards
Closer to where you are;
Closer, always closer
To where I look for you-
The space, place of you;
The one that feels at home

Yes, (with her)
I feel like I am home.

I came to visit you
Today,
No, Not in the usual way.
(Alone, but not lonely)
I brought her (My “she”)
“Yes,”
to introduce-
(reintroduce)
For you to meet and greet.

Concrete softens,
Falling like rain;
Gentle and wet,
Puddles and memories
Of life
Of death
All mix into One...

Splash, splash
Pitter pitter
pat, pat pat
(twitter)
My HEART now beats
21 Love poems
per minute
(complete)
For 21 (effulgent) days.

---sas
01/16/2010

Missing Mom: In Memory, Nadine Cox Swaner

2010-01-13T19:03:00.002-07:00

January 13, 2010

IN LOVING MEMORY:

NADINE COX SWANER

September 13, 1927 ---- January 13, 2006

Saturday, January 13, 2007

Dear family, friends and loved ones,
Today, at 3:25 p.m., our wonderful, beautiful Mother, Spouse, Grandmother,
Aunt and friend,
Nadine Cox Swaner, died at the Huntsman Cancer Institute;
Surrounded by her family.

We held her hands, sang to her, and read her stories.
Stories, that for years and years she read to us.
We stood around her, listening to her breathe-
Even, and especially, as it became less frequent and more shallow.
Thinking, just how beautiful and complete she was.
How formidable, how strong, how determined and selfless she has always been.
A true "Saint of A Mother" to be sure.
And yes, she did make the best Carrot Cake.

It was only one week ago that we were together with many of you,
As we grieved, honored and paid tribute to our brother, her son, Scott.
They were such dear and tender friends;
Their bond and love for one another was deeper and stronger
than one could imagine.
This is a tragic and unexpected loss.
We can only hope they are together,
now both free from pain-
Together, continuing to make a difference.
Together, glowing,
Together, teaching.

The loss of our Mom, the loss of a Mother is especially difficult.
She has loved, protected and taught us so much.
She is unique in all the world.
We count ourselves particularly lucky and blessed to have been hers.

She is grand, eloquent, beautiful, selfless and long suffering.
She will be remembered most for her graciousness, generosity,
unconditional love and magnificent strength.
She lived a determined and purposeful life. Always.
She is the strongest woman we know.
Her faith and love for her Heavenly Father is unparalleled.

Our Mom was a gentle woman, with a twinkle in her eyes
And a smile that could light up every room and brighten any heart.
She brightened all of ours.

We love you Mom! Infinitely and Eternally.
We will miss you more than you will ever know.
Our hearts are broken and we are so sad.

No one, and nothing prepares one adequately for the loss, the death of your Mother.
We promise that we will love and cling to each other, forever and always
And think of you every minute of every day-
We are grateful for every moment and memory we shared with you.

Loves,

Hal, Sue, Sheri, Stacey ( and Scott )

Please feel free to contact us and we will help as best we can.

Sue Swaner: albeez_90@hotmail.com
Sheri Swaner: sschapin50@gmail.com
Stacey Swaner Moore: pancreasboy@comcast.net
Harold Swaner: hbswaner1@gmail.com

A Mother's Love
~
A mother's love determines how we love ourselves and others.
There is no sky we'll ever see
Not lit by that first love.
Stripped of love, the universe
Would drive us mad with pain;
But we are born into a world
That greets our cries with joy.
How much I owe you for the kiss
That told me who I was.
The greatest gift--a love of life--Lay laughing in your eyes.

Because of you my world still has
The soft grace of your smile;
And every wind of fortune bears
The scent of your caress.

Nicholas Gordon

With Gratitude and Thanks: Scott's Beloveds

2009-12-19T14:42:00.016-07:00

SCOTT'S BELOVED FRIENDS:

alt=""id="BLOGGER_PHOTO_ID_5417070317258440050" />

Friday, December 18, 2009

Not a day goes by that I don’t think of and miss my brother.
He lived an extraordinary life; a life of purpose, determination and graciousness.
The loss of Scott, his life shortened, stolen by the wretched, insipid and indiscriminate
Diagnosis of Pancreatic Cancer continues to break my heart. It always will.

However, I know that I am not alone in my grief and sadness-
I am not alone in loving, caring, missing or being touched and changed by his unique voice. Scott, indeed, was loved, respected and revered by many.
The rest of my family, his students, his incredible friends and those dearest to him were all shocked and saddened by his death. Also, of equal significance, is the profound effect, the indelible memories of love, learning, laughter he left us with.

Yes, his was an amazing life. How grateful I am that Scott lives on through his works, words, beautiful mind and expansive heart. His relationships were as unique as they way he shared them. Which is to say, each of us knew and loved Scott individually, in our own unique and distinct way and for various reasons.

As the third Anniversary of his death approaches, I am not only reminded of Scott
but also of his loving friends, especially those who loved and cared for him both before his diagnosis and until the moment of his death.

When I flew in to Seattle from Salt Lake, I immediately had to take Scott to the Emergency Room. He was in so much pain and was having difficulty breathing.
He remained in the Hospital until 4 days before he passed away. Many, indeed most, of those memories are harsh and sad. Watching him die, not wanting or able to eat anymore, barely being able to move and sometimes, not able to speak, especially during his last days, are filled with images, feelings of hopelessness and such sorrow.
At times, I was totally paralyzed, often having to leave the hospital, as I could not watch him die.

I continue to have trouble forgiving myself for being so weak-for not being able to “be” and remain in the present for Scott. I just kept falling apart, bit by little bit. I am hoping Scott has forgiven me for that; that he knows and is aware of my heart and true intentions. Knowing Scott, I can only believe that he has and understands.

This post is one of gratitude and thankfulness to all of those who loved and cared for my brother, most especially, his “Seattle Family.” Those precious, courageous, caring, selfless, thoughtful and strong individuals who were with Scott during his illness, daily, indeed, those who were with him until the moment he died.

I don’t know, nor did I meet many of Scott’s friends and colleagues that lived in Seattle but the ones I met, especially those who cared for and watched over Scott during his last days, I wish to thank you. There are not enough words, or words that adequately express how much I appreciate your loving my brother.

To Frank Chiarella, one of Scott’s best friends, indeed, his brother, (mine too) who brought so much love, laughter, balance and incomparable friendship for so many years. I love you big guy, forever and always, just as you know that Scott did. You were beloved to him-but I know you already know that. Also, I want to thank you for the years of friendship and support, you have and continue to be for me. Yes, “You are my favorite thing.”

To Ted Mack, a dear colleague and friend, who was with Scott when he got the horrific news of his diagnosis; you planned birthday parties, spoke at Scott’s funeral, took turns taking Scott to Chemotherapy appointments and supported and loved Scott for so many years. You came to love and care for our Mother as well, for this and many things, I am forever grateful.

To Gillian Harkins, a colleague and dear friend. You are dear to me. So often Scott would write and speak of his closeness, respect and friendship with you. When we all went to dinner one night, I remember seeing my brother smile, hearing his laugh, just as he did before his diagnosis. It made me giddy and I smiled. Also, for your hours at the hospital,
whether taking Scott to his Chemotherapy appointments, or practically living in the hospital, when he became so, so ill. You were always there, often giving no thought for the many things you needed to do, your teaching obligations.
I will always love and appreciate you and remember with fondness, yours and Scott’s friendship.

To Kim Luu: How does one thank the person who was with Scott the moment died? The person who loved, cared for and lived with him, “In sickness and in health?” Truly, I have no words. Your strength of character, selflessness, your ability to minimize Scott’s anxiety-These are moments, characteristics that always amazed me. Please know, forever know, you are and will always be, loved and appreciated by me and my family. You were so often the conduit between and for, giving out vital information to us and all those who loved Scott. You are an amazing woman. I hope this finds you well and happy. And yes, yes, I thank you for everything-for the loving care you gave to Scott.

Indeed, all of these people, brought me and my family comfort and piece of mind, knowing that you were there with him. It helped calm my grieving Mother’s heart, as she was ill herself, and could not be where she wanted; With Scott, her only son and favorite person. She died soon after Scott’s death; Not so much from Leukemia, I think, but from a broken heart. I miss her, too, just as I miss and love my brother.

When I think of all of you, this poem by Emily Dickinson frequently comes to mind.
Please know, forever know, that you fine people not only “eased” Scott’s pain and mind but also that of his family.

"If I can stop one heart from breaking, I shall not live in vain.
If I can ease one life the aching, or cool one pain, or help one fainting robin unto his nest again,
I shall not live in vain."

 -- Emily Dickinson

For that and many things, I thank you, Scott’s family thanks you and we will be forever indebted to
and appreciate the love, light and life you gave to him.

With love and gratitude,

Sheri Swaner
sschapin50@gmail.com

Harold Swaner, Sue Swaner, Stacey Swaner Moore, Susan Passino, Kerry Moore, Deborah and Garth Swensen,
Mike and Whitney Luna, Matt Luna Whitney Moore Wilber (Alan,) Dayne Moore and all of Scott’s darling
Great nieces and nephew.

CHEMOTHERAPY: STRAIGHT-UP, NO CHASER

2009-12-13T23:49:00.004-07:00

Sunday, December 13, 2009

IN LOVING MEMORY

of

Scott H Swaner

LIFE: The Crash Course Version

"Death and dying are the easy parts, it's life without someone that's
hard, the harshest ... and as bad as this feels now, it is not the worst part.”

Saturday April 29, 2006

JOURNAL ENTRY #6: ORAL CHEMOTHERAPY

Some bewildered musings and deeper thoughts, one Saturday morning with my brother:

My brother Scott has developed his own scale of pain in a blog he
created. It differentiates between physical and emotional pain.
Consequentially, there are always two numbers-one for how he
feels emotionally, the second indicates how excruciating the
physical, tangible pain is from the cancer that disrupts
and poisons his body daily...how much he hurts.

Today I'm writing about my own pain, as one who loves and cares for
him. How my brother's pain, anguish and befuddlement, is, as the impending end of his life draws ever near, affects me.
And yes, it is painful-- oh, so very much and in so many ways.

As of yet I have found no scale worthy enough, no barometer
or gauge I can go to or use, that adequately describes the pain I am feeling.
I don't think I even want to. It makes it too real. Yet no matter
how hard I try to distract myself, the agony is ever present. It
follows and surrounds me like a dark and ominous cloud.

We started the day with our new morning ritual; a cup of freshly
brewed coffee in hand with me asking what he would like for breakfast.
Food is a sore subject--he has no taste buds and no appetite. So I
am learning to approach the topic delicately, respectfully, though at
times carelessly, in unintended ignorance or avoidance--as if his diet is of no consequence.
Though I know it is.
However, today was different. He didn't respond in his usual way;
"Sheri, I've told you...I don't care what I eat anymore...if it
tastes good or not, even if it something I used to enjoy...Let me just get
something myself. " Today, instead, he said, "Oh, I can't eat
anything yet. Today is an oral chemo day. I have to wait 20
minutes until I can take the chemo pills, then I can eat a little
something after that, but then, yeah, something for breakfast would be great."

I was fine for a moment. Then this awkward silence descended on me.
Both of us realizing, simultaneously, that this one paltry response,
actually spoke volumes. We never used to talk about cancer or
Chemotherapy, but more exact, we never spoke about HIS having
Cancer, let alone the significance of what, how the chemotherapy is killing him too.
And it’s not even a pill that will cure him. It is only a pill that may, MAY
prolong his life, hopefully, a few more months or days, if we are lucky.

Then my brother asked me, half joking, half to break the unbearable
silence, if it bothered me if he took "the pills" infront of me?
Bothered me? I could feel the tears begin to well up, my barrier of
courage cracking as I began to weep. I cannot recall my answer, all
of the words I spoke- Only that they were feeble at best, compared to
all that I was feeling. I answered, though hardly discernible, that
"Yes, it actually bothers me quite a bit ... not that you are doing
it in front of me...just the mere fact that you have to take them at
all ... " "It just makes me so sad...so mad," as the tears
freely rolled down my face, like waves crashing on a shore.

I discovered this poem as I was searching for an Anne Morrow
Lindbergh quote. It attempts to express how and what I was feeling
during my Saturday morning session with my brother.

Fairy tales For My Brother

It seems wherever I go,
People come into my life and go out.
Touching me where I can feel,
Then leaving only a memory
Like the gossamer fairy tales of children easily forgotten.
And I wasn't through knowing them.

How do I know
Whom I am seeing for the last time?
How do you halt your life
To gather and keep fairy tales from losing their magic?

So come.
Brush against the walls of my life
And stay long enough for us to know each other,
Even though you know we will have to part some time.
And we both know the longer you stay,
The more I will want you back when you have gone.

But come anyway.
For fairy tales are the happiest stories we know,
And great books are made of little chapters.
-anonymous

This is my journal entry for today.The significance of watching my
younger and by all accounts, except for his having terminal pancreatic cancer,
healthier brother ingest oral chemotherapy, oral toxic poison, to (hopefully, though painfully)
steal a few more days of LIFE and LIVING.

This is a journey, an experience that no one prepares you for. There
is no rule book to guide me through my anguish and sorrow. And so I
depend on the strength and comfort of my friends, partner, family and
loved ones to help steer me though this. Not for myself -- but so
I can be of some use to him, as he becomes weaker, as I know he will.

What makes this so uncanny and peculiar is, I still find myself relying and depending on him to assist me with the answers on “how to cope” and as a source of strength
and balance. These are two of the roles he is and has always played in my life.

I want and need to be there, for him. Sometimes, though, I don’t know what to do with my fears, the grief and sadness I feel, as I watch him in pain.

I learned early on in his diagnosis, that to pretend that this isn’t happening, to try and distract myself from this harsh reality, is insensitive, superfluous and only causes more pain.
Again, BALANCE; I need to discover my own.
And yes, this scares me and I tremble at the thought of how to really listen, listen to my brother and what he needs. Confronting, standing straight up and forward:
The process of losing my brother.
Doing it alone.

I will follow his lead.

Something else, another observation...As ill and weak as he is, knowing he will die soon, and all the thoughts and fears that come with that knowledge,
Scott still, as always, tries to shield and protect me from what he knows will be
My sorrow, after he is gone. He knows, has always known, how much he means to me.
Indeed, he knows of the ominous hole, void, emptiness that will become a part of my waking life, after he has gone. He is so selfless, thoughtful and gracious-even and in-spite of his facing death, head on.

This I do know: Scott will not, has not and could never lose his "magic."
His importance in my life, if anything, is even more penetrating, alive and prevalent.
The thought of losing him is the most unbearable pain I can think of.

But, "I will come anyway" and join him in his fight and struggle in
trying to make some sense of this most senseless and crude diagnosis
and disease.
He is fighting for his life. I am fighting for his life--and hoping for a miracle.

As I continue to love, enjoy, learn from and honor him,
I am grateful for every moment and experience we have shared. Every thought
and stolen memory I have, and will continue to remember; knowing I was blessed with the most wondrous brother; one who amazes and overwhelms me every day and in every possible way.

My heart breaks a little more each day; With the swallow of a pill, a groan, a sigh,
or the pensive look of ashen pain, that hasn’t left his face since his diagnosis--
Either way, he remains determined, always. Productive, beautiful, self reflective,
and thoughtful, constantly.

His is an amazing life. And yes, I stand amazed and in awe of him.

I love you, my brother.
"This is not good-bye"

Loves,

Sheri

sschapin50@gmail.com

Now, from Scott:

Since the middle of Friday night, when too many of us were ripped from an ignorant sleep, I’ve been searching for “death.” What now? What next? The more I looked around for “death” the more I found that another term, another experience, always seemed to occupy the same page: wherever I found “death” I seemed to find “love,” someone’s love. This poem is one example:

“42. love is more thicker than forget”

love is more thicker than forget
more thinner than recall
more seldom than a wave is wet
more frequent than to fail

it is most mad and moonly
and less it shall unbe
than all the sea which only
is deeper than the sea

love is less always than to win
less never than alive
less bigger than the least begin
less littler than forgive

it is most sane and sunly
and more it cannot die
than all the sky which only
is higher than the sky (CP 530)

So there we have it, from the poet e.e. cummings: we have love and memory, we have love over death, and we have love above all else. Is there anything else we see with more brilliant clarity at this moment? “That which takes place out of love takes place beyond good and evil” (Nietzsche, Beyond Good and Evil 103). In love, in acts of love, in acts of loving memory, we are not working in conflict with someone else’s version of right and wrong. Today in memoriam, we are not here as believers and non-believers, as faithful and faithless, we are here as family. The family first, the family beyond forgetting, the family of love.

When we think of death we are most commonly strictured in our minds by what we assume is the usual pairing of experiences and feelings—in other words, the pair, Life and Death. This, however, begs the question: should we think of these as a natural pair?
The answer is no: rather, it should be thought as Love and Death. Because life and death are not opposites, they are the same. Love and death are opposed, and yet complimentary. It is through love that death acquires meaning, it is through love that death becomes more than Nothingness with a capital “N.”

I used to know a poet who would say of poetry, and therefore of life, that “Fear of loss is every lover’s fear.” If death is the personification of loss, then the lover, is left alone by death, alone to live on until released from, or reconstituted by that loss.
To state it differently, without love death means nothing, it is scientific, numerical, and perfunctory.
Life, of course, it simply dies: death, of course, is already dead, leaving us with love alone. Love alone survives. Love alone resists. To put it in the harshest possible light, love alone is too damn stubborn or stupid to know any better. So we are left here, either too ignorant or too intransigent, standing gaping around this frightful rent in life’s fabric. The gaping hole in meaning and life.

How long will the edge of this fabric support us? We wonder while we weep and gaze into that oblivion. On this side of death we are only left to remember—with pain as the most powerful reminder; we are left to be chastened, at least a little; and we are left to be admonished, somehow, next time, to do better.”

---Scott H. Swaner

All words, works, by and in behalf of Scott H Swaner
Belong to Swaner Family Trust
Copyrighted material

He Went Not Gently: The Daily Transit

2009-10-08T22:58:00.004-06:00

He went not gently
Published June 4, 2007

It is perhaps one of the saddest things in life to lose touch with a person only to later find that they have passed away – the understanding that there will never be a reconnection bears a heavy weight.

This morning, I felt the brunt of this sadness as I tried to look up a former professor of mine from the University of Washington. It was strange; when I failed to find his email in the directory I simply assumed he had moved on to another school – he was a young guy and, as far as I knew, in good health.

I decided to Google his name just to see where he might have wound up, only to come upon the ominous subtext of the first link, from the UW Department of Asian Languages: “The department mourns the passing of…”

I clicked the link anxiously, eyes wide as they jumped between the text and the black and white photograph of my former professor. I spoke aloud and disbelievingly to myself and to the silence of my apartment. Everything was making horrible sense – the emails that were never returned, and in front of me, the glaring fact that he had died last year.

Professor Scott Swaner was not someone I could call a personal friend, which seems quite obvious given my obliviousness to his death. But to me he was somewhat of a kindred spirit. He was my adviser and professor in 2005, and a great scholar of Korean literature.

We shared a common bond in our passion for the culture of the peninsular nation, and I always smile when I think of the comedy of two tall white guys with somewhat outlandish facial hair sitting in an office speaking in Korean. Professor Swaner always pushed me (and all of his students) towards a deeper understanding of Korean culture through literature and towards sharper language skills. He was one of the first professors to really teach me how to think, and he encouraged and further inspired my ambition to be a journalist in Seoul.

I remember fondly other things about him – the Korean movie poster covering his office door, the John Coltrane poster hanging on his wall, and the time we ran into each other at an anti-war rally in downtown Seattle. Professor Swaner was a confident, complex and wise man, and I regret that I didn’t take more time to visit his office hours, to just chat, to listen and learn.

While in subtle mix of disbelief and sorrow this morning, I followed the internet hypertext trail to a comment on an NPR segment on cancer about Professor Swaner, and from there to the blog that he ran from his diagnosis to his death. It’s called Do Not Go Gentle, the title inspired by the poem by Dylan Thomas.

Though I hardly have the heart to backtrack through his battle with the disease, his first post is perhaps one of the most sobering – I’ll re-post a bit of it here:

Imagine you’re moving through your life, beginning your career, enjoying some success and good health, and like anyone else you’re making plans. You’re 38–in many senses it’s the prime of your life. In any event, you’re young still. You liked reading and writing so you went to graduate school, you traveled a bit, in 2003 you started teaching poetry in a university in Seattle. You get halfway through your second year, gearing up to finish that “first book,” when your doctor calls to follow up on some tests about stomach pains you’ve had: “You’ve got cancer of the pancreas.” [...]

It is both an unimaginable nightmare and a stark reality – that life, one day, ends. It is always sad, but for Professor Swaner and all good-hearted people who face death young, it is a tragedy.

Professor Swaner died of pancreatic cancer on December 20, 2006.
He was 38 years-old.

-------------------------------------------------------------------------------------------------

Responses to “He went not gently”

Sheri Swaner

June 5, 2007 at 9:12 pm

My thanks to you for your recognizing
and your writing about my brother, Scott Swaner.
It is always good to her from those who knew him in a different context then that of family.
He was a brilliant writer, insightful teacher–
who loved Korea; its people, language and culture.
I miss him dearly.
And you are correct–
He “did not go gentle .. ” — he fought and raged against this senseless and tragic disease until the day he died.
He is my hero, my best friend–
I’m so glad you two were aqauainted
and I appreciate your caring enough about Scott,
to write about him.
If it is okay- can I pass along your blog to the rest of my family?
Thank you so much.

Sincerely,

Sheri Swaner
Salt Lake City, UT

http://thedailytransit.wordpress.com/2007/06/04/he-went-not-gently/

Pancreatic Cancer News: Rx Reverses Resistance to Chemotherapy

2009-10-08T14:57:00.000-06:00

Pancreatic Cancer: Researchers Find Drug That Reverses Resistance To Chemotherapy

NewsRx.com

October 1, 2009

For the first time researchers have shown that by inhibiting the action of an enzyme called TAK-1, it is possible to make pancreatic cancer cells sensitive to chemotherapy, opening the way for the development of a new drug to treat the disease.
Dr Davide Melisi told Europe's largest cancer congress, ECCO 15 - ESMO 34 [1], in Berlin today (Thursday 24 September) that resistance to chemotherapy was the greatest challenge to treating pancreatic cancer.
"Pancreatic cancer is an incurable malignancy, resistant to every anti-cancer treatment. Targeting TAK-1 could be a strategy to revert this resistance, increasing the efficacy of chemotherapy," said Dr Melisi, who until the start of September was a Fellow at the M.D. Anderson Center in Houston (Texas, USA); he has now moved to a staff position at the National Cancer Institute in Naples (Italy). "During the past few years we have been studying the role played by a cytokine or regulatory protein called Transforming Growth Factor beta (TGFbeta) in the development of pancreatic cancer. Recently we focused our attention on a unique enzyme activated by TGFbeta, TAK-1, as a mediator for this extreme drug resistance."
Dr Melisi and his colleagues investigated the expression of TAK-1 (TGFbeta-Activated Kinase-1) in pancreatic cell lines and developed a drug that was capable of inhibiting TAK-1. They tested the activity of the TAK-1 inhibitor on its own and in combination with the anti-cancer drugs gemcitabine, oxaliplatin and SN-38 (a metabolite of the anti-cancer drug irinotecan) in cell lines, and the activity of the TAK-1 inhibitor combined with gemcitabine against pancreatic cancer in mice.
"The use of this TAK-1 inhibitor increased the sensitivity of pancreatic cells to all three chemotherapeutic drugs. By combining it with classic anti-cancer drugs, we were able to use doses of drugs up to 70 times lower in comparison with the control to kill the same number of cancer cells. In mice, we were able to reduce significantly the tumour volume, to prolong the mice survival, and to reduce the toxicity by combining the TAK-1 inhibitor with very low doses of a classic chemotherapeutic drug, gemcitabine, that would have been ineffective otherwise," said Dr Melisi.
The use of gemcitabine on its own against the cancer in mice was ineffective because of the drug resistant nature of the disease. However, once it was combined with the TAK-1 inhibitor, Dr Melisi and his colleagues saw a 78% reduction in tumour volumes. "The median average survival for the control, TAK-1 inhibitor, gemcitabine on its own, or TAK-1 inhibitor combined with gemcitabine was 68, 87, 82 and 122 days respectively," he said.
"This is the first time that TAK-1 has been indicated as a relevant target for the treatment of a solid tumour and that it is a valid approach to reverting the intrinsic drug resistance of pancreatic cancer. The TAK-1 inhibitor used in this study is an exciting drug that warrants further development for the treatment of pancreatic cancer. In the near future, we will study whether it is also able to make other chemotherapeutic agents, such as oxaliplatin, 5-FU or irinotecan, work against pancreatic cancer in mice.
"Our main goal is to translate this combination approach from the bench to the bedside, conducting a clinical trial that could demonstrate the safety of this TAK-1 inhibitor in combination with gemcitabine, and its efficacy, in pancreatic cancer patients."
Copyright 2009, Anti-Infectives Week via NewsRx.com

A Political Interruption Revisited: Political Cancer

2009-09-10T20:20:00.005-06:00

Thursday, September 10, 2009

9/11 Revisited.
Musings, thoughts and Scott's unique perspective On the global tragedy of September 11, 2001.

He would have enjoyed this last election;
The election of President Obama.
Somewhere, somehow, I know Scott is listening-
Continuing his passion of all things political;
What is just and fair, without the hyperbole, meaningless rhetoric
and criminal behavior of George Bush and Company.

Loves to you my brother,

Sheri

Sunday, September 10, 2006

9.10.06, A Political Interruption

While what I'm suggesting might not be a revolution, big banners, tear gas, thrown stones,
I do hope everyone is paying the very closest attention today and tomorrow.
We need to think hard and critically listen, to see through the cock-n-bull political stories that will be fed
to the public as anniversary gifts of 9-11.
I can't not write this hearing what I am in the news.

We will see the mendacious forces of an illegitimate administration —
its Bushes, Cheneys, Rices, Rumsfelds, and Roves — take full and cynical advantage of a five-year old world tragedy.
Not merely a US event. They will spin the tragedy of thousands and thousands of people in the US, and tens of thousands,
if not hundreds, in other countries, to their own domestic political advantage.
The US constitution paralyzed, the Geneva Convention gutted, any sensible conception of human rights
and international law mocked through hypocritical and selective manipulation.

But Bush and his friends will talk of Iraq, and Iran don't forget, of Nazi Germany, of fascism
(the form of political state of affairs which the Bush administration most closely resembles
[if you honestly doubt or don't know it, look up "Fascism" in the Int'l Encyclopedia of Social & Behaioral Sciences]),
and so on ad nauseam.

So disgusting I could spit.

I just know that this morning it begins, on the Sunday morning TV circuit. What kind of nightmare administration do we live under? What kind of legacy are we passively perpetuating?
Today and tomorrow, I can't help but think, will embody the twisted highlight of a sickening logic to their
political power run amok. A ethically lascivious peep-show, the anti-reality hour for oligarchs, soldiers of fortune,
and neo-fascists who will stand in a circle watching, their feet continually shifting on the sticky floor.

And you can see it for FREE, just turn on the tube."

---- mr. jones [Scott H Swaner]

In Memory:
Scott Swaner
January 6, 1968 - December 20, 2006

Also posted here:
http://postmoot.net/archives/860.html
copyrighted

Cancer, Coffee and 'What defines A Life?'

2009-08-12T23:31:00.003-06:00

Sunday, August 2, 2009

The Art of Living:

“There are moments in time that are meant to be held
Like fragile, breakable things.
There are others that pass us, you can't even tell
Such is their grace and their speed.
And this one is gone in the blink of an eye...
Do you ever jump in without closing your eyes...?”

---Mary Chapin Carpenter

Some thoughts, musings about Life and the purpose of Life. What ‘defines” a life, In the making, creating and living it?
And too, Are we really ‘Living’ given the choices we make every day -- Are we squandering our time; stagnating, unmovable, out of fear, grief, or past experiences? Indeed, are we allowing ‘something’ or ‘someone’ to steer our course and make our way, when we know we should be DOING our own steering and DOING more?
Are we following our dreams- living life to the fullest degree possible? Are we utilizing the tools necessary to
create, mold and shape our lives, our being, Into something worthwhile, purposeful and glorious,
even when the road before us seems ominous and ‘just too hard’ to change from that what we know, are familiar
and comfortable with? Also, are we making certain that we are not taking for granted this glorious Gift;
The Gift of Life, living and time?

A ton of questions... to be sure, but pertinent and the answers are as unique and individualized as are each of us.
No, Not a simple task but the alternative, not having and appreciating life and being open to all of it’s possibilities,
is more bleak, with far reaching implications of dying a little, every day, BY OUR CHOOSING. What does our future hold? Indeed, it does beg the question: “What defines our life, who we are and what we want and are doing with our time?
Are we willing and ready; “to jump full in” (without blinking an eye) when grand, healthy and life changing moments and people: The “fragile and breakable” ones present themselves and invite us to join?

It seems that whenever I get “stuck,” muddled in the spaces in between or find myself at a crossroads, as I do today,
I cannot search long and fast enough to find truth and crucial answers. For better or for worse, I usually find the best and most applicable answers in something that my deceased, younger brother, Scott has written.
For those who know me, this should not come as a surprise. For thirty-eight years I loved, listened to, cared for, adored, honored, appreciated and stood in awe of him;
His accomplishments, his beautiful and self reflective mind and even more expansive heart.
Scott was unique, complex, brilliant; a true genius of sorts. He was also loving, kind, gracious, wise, a good friend,
a beautiful son, a grand and favored brother, a person of balance, theories and an eloquent writer.
These words barely begin to describe and define him, Scott’s life and all that he taught and shared with me and hundreds of others. He was my best friend, my soulmate, the person I enjoyed being around the most.

Is it any wonder ‘why’ I would not continue to seek and learn from him? Yes, he is dead, his physical presence is gone.
I cannot call him on the phone spontaneously, to check and see how and what he is doing. If he has written a new poem? What and all he is thinking about and creating. A huge void, an emptiness remains in my soul and all that encompasses me. Scott has been dead and gone three years this December. Not much time, really, especially when I consider the amount and quality of time we shared; our silly rituals and traditions at Christmas time, when he would always come home. We watched the movie: “Home For The Holidays” at least twice every Christmas, laughing, to the point of almost passing out,
grinning from ear to ear, because the characters in the movie reminded us so much of our own family and similar quirks
and dysfunction.

The emptiness creeps up on me, when I travel to Southern Utah, a place Scott dearly loved and where he sought refuge
and inspiration. When I purchase a sparkly, new fountain pen because of our shared fondness and appreciation of them.
“The Mighty Pen” was one of his tools of creation and beauty. So many memories of my life, are, and will forever be, intertwined and linked with Scott. So as I began to write about life, it’s purpose and what defines a life, I chose Scott as my exemplar. I watched, waited and grieved for the nine months he suffered and fought against the beast of pancreatic cancer. The pain on his gray and often ashen face never left after his diagnosis. It was and remains, the most horrific, painful, heinous and darkest time of my life: Watching my younger, brighter, gifted, talented and beloved brother die, bit by bit, everyday,
as the cancer and chemotherapy ate away at his beautiful life, dreams and body.

This is not meant to be maudlin, except that it is and was. Hopefully it will serve as a basis from which I can begin to write
and express my feelings, thoughts and wonderings, in context, about “Life,” it’s meaning, purpose and definition.
Oh how I miss him- everyday. Not a day goes by that I don’t think of him, the fond memories, life lessons, the bond,
and great and wondrous love we shared as brother and sister and dear, beloved friends.
Sometimes I “get a catch in my throat and I just swallow hard until it leaves me,” Other times, I allow the tears that
are always close to the surface, to flow freely, uncontrollably down my face and neck, yes, a tear streaked salty face,
full of of love, missing and honor.

I will begin by sharing one of Scott’s posts from a journal he kept, a blog and daily account of what he was feeling and experiencing, what it was like for him to face death: “Head On” and continue to LIVE a life full of purpose and meaning, in-spite of, maybe even because of, his knowing that; “soon I die.” Scott lived more in his last nine months of mortality than I have lived in my entire 51 years. So, of course, his definition on “what defines and makes a life and a sense of purpose,
is overtly significant, important, descriptive and noteworthy.

And yes, Scott loved coffee.

---Sheri Swaner

Or, It’s All About Getting Started:

“It is all about Making coffee.” By Mr. Jones, Scott swaner www.donotgogentle.blogspot.com

Revisiting Scott's blog, on July 22, 2006.
Do Not Go Gentle — Poetry & Cancer, Life & Death

[Some thoughts about pancreatic cancer, pancreatica, metastatic cancer, dying young, untimely death, quality of life, then poetry or "a making, a creation" — & what can be left of it while coping with fear and grief and dumb fate; trying to make a life, with what seems like little left. Family & friends, love & loss.]

Saturday, July 22, 2006

7.22.06, Brief Indecision
“Walked into the kitchen, which is still shaded out because of yesterday's heat — and what they say will come today as well, and took a left turn, walked about ten feet to the far wall where I stood facing the sink, coffee maker, coffee grinder, rice maker, dish rack. For a brief moment I thought about what Frank asked me once, or I thought rather the object of his question, at what point when you get up every morning do you think "Ah, fucking cancer"? Today I woke up and it was already woven into my thoughts from the left turn, the ten feet, the facing of the morning machines.
Cancer; cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking ‘family talk’ in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . .kneel and move your lips as if you believe..." the same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.
This is how the terminal psychology seems to work, if I am in any way representative: News from the re-staging wasn't really news, in a sense it was information I was waiting for but already knew, information I knew would be coming, at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last re-staging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."

The psychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The finite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simply taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the re-staging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake, when your head cracks against the exam rooms white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts about 8 weeks of rest or healing: it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. The dice have been rolled in The Big Casino, is one message.
Second message: Your winnings are about gone. You realize, yes, that soon I die.”-- mr. jones
To illustrate, I’m including part of one of the poems that Scott wrote during his fight and life with terminal pancreatic cancer. It serves as the premise, the meaning of a well lived life of defined determination. It is also copyrighted. ; )

“Life, the Crash Course Version”

“Death opens vistas through its immanence. Widened
Vision and broadened possibility both result from the horror
Of the approach, the horror. Every possibility existing gossamer,
Hanging by delicate threads of if, comes to the fore of when-
Pain’s freedom is finally achieved.”

--SHS

This particular post of Mr. Jones, was originally written and posted
On Friday, July 14, 2006.
He passed away a little over 5 months after writing this.
I am re-posting it for several reasons. First, because it is one of favored writings,
Second, Scott could have written the theme of this post at any given time in his 38 years.

Scott lived! Scott Lived, each day of his life was purposeful and determined.
A good lesson for all of us, no?
Certainly a lesson that I need to work on; a lesson he reminded me of,
Either in word or by how he lived his life; Honestly, with conviction,
and determination.

What Defines This Life, What defined Scott's life?
Most of the answers are found within this post.

I miss you, Scott.
Sometimes more than I can bear...but then I remember what you asked me to do;
And I try harder. The missing never goes away, though. Ever.

Love,

Sheri

7.14.07, "What Defines This Life?" You Ask By Mr. Jones aka Scott Swaner

*Franky Scale: Why just one? Started about 6, dropped to a 5 for a while till I did some pharmacological adjustment. Ended up close to 7, the day was good, saying good bye to Ms. T over crumpets and books at the Left Bank, then with Mme. X for a dinner of bar food.

*Dearest Prof. Jeong, Yonsei University,

First, I wanted to let you know that this is the right blog. I was so glad to get news of you recently, or more accurately news that my fucked-up news had reached you. And I was moved by and can imagine your reaction. It's been too long since we've seen each other and I hope, as always, only the best for you. I miss being able to drop in and discuss aleatory Marxism, Althusser, and modern poetry. Whether the category "lyric" is salvageable let alone salutary . . . figuring out what Hwang Jiwoo is talking about . . . So much there left undiscussed. Also, I'm sorry if the pseudonym threw you off track, my nom de guerre, as it were. For professional reasons I withheld my real name initially and the "Mr. Jones" trope, though I haven't yet discussed its why's and where-fore's, has proven useful in unexpected ways. Let's talk soon, I'll try to email.

*There is a certain clarity I possess, or feel possessed of these days, only occasionally, usually around this hour of twilight — not meant to sound either Romantic or mystical, just noting the phenomenon — so at this time, when the combination of hunger / fullness, pain / non-pain, nausea / calm, etc. settles down below the most obvious level of consciousness, then I feel my fingers freed up (odd metaphor of the keyboard age), and a certain sense of vision accompanies this: not Blakean, or Ginsbergian (after Blake) but more Spinozist, it's almost scientific, that of a lens grinder, someone who is thinking of visual theory at the same time as rhetoric. I hope it combines to produce something lucid or pellucid even or even merely reflective of the clarity. Gibberish? Could be. Oxycotton? Could be.

*An Anonymous writer posted a few questions on the post called
"What Cannot be Said" from two days ago; it ran as follows:

"Question to consider (or not?)
[a] what if all questions are the wrong questions at this moment?
[b] it isn't as simple as what to do with your time;
[c] rather, what will you do regardless?
[d] not what to do in the time left, but what would you do anyway, given one week or one year?
[e] what defines the life you have chosen?" [I've added the letters for easier reference.]

The final question #e I can answer with some confidence, what defines a life, whether chosen or fallen into,
Is always the same it seems: it's action, the practices of everyday life, movement, activity.
All the talk and hyperbole, all the promises and the efforts, all the intentions and the apologies,
And finally, all the ideals and the general wishes or desires — none of it means more than a passing comment in a dark bar.
In the end it is part of a failed seduction. In the middle and the beginning, too, it's nearly meaningless, however, we can more easily kid ourselves, succumb to an ideology that allows us to remain productive.
In the end, after all is said and done: It is only the book that is published, printed, or passed around and read at least, is the book that counts. All the ideas for other books, all the drafts (in the mind) and sketchy notes, disorganized notes don't count.
The “Other” ideal profession doesn't count, only the one you actually did. Me, professor, modern Korean literature, poetry, aesthetic theory. Like it or not, that's what defines me, it's where I've come. It’s what I DO. Most simply put, I can't help but think more and more surely over recent years and especially now, that only what one does is what defines one's life.

As a brief interjection, these questions have all been covered on the blog before. In fact, they're nearly the primary philosophical or psychological reason for starting, for figuring it out. That said, I'm glad they're raised again since revisiting them now and then is always a good idea. Too, things change quickly in the Big Casino.
The roll of the dice, the hand you have been dealt...
(And too, also, it's good to have comments to engage with now and then on the blog.)

Question #d is, to put it rather directly, not relevant. Not anymore,
not to me during this period; the knowledge of a foreshortened life.
The meaning of all activity has radically changed for me since I was introduced to terminal cancer, except to the extent that I think of the act and action as described in the paragraph above.
To ask what "I" would do "regardless" (#c and #d) of this situation means to ignore this situation;
One would have to confront it ‘head on’ and then decide to live in defiance
of its reality.
I think that's somewhat counterproductive, especially considering the numerous epiphanies the experience affords.
So much new insight to be had from the “2x4-across-the-head” nature and thud of this new knowledge;
That not only am I mortal (of course) but that my mortality has been radically foreshortened into a number of months.
I'm supposed to be able to count them on both hands, if I’m lucky.
(The timeline now, based on admittedly less than ideal statistical averages, in fact puts down the number of months like this.) Finally and practically, I probably would not be concerned with writing a memoir currently without the news.
Life's obligations would push all that aside.

I suppose the latter two questions addressed would be quite on target for someone at home with eternal recurrence, someone unquestionably not possessed by the notion of "the grass is greener," someone who had made all the "perfect" life choices and was either in unquestionable love with her work or independently wealthy. Wouldn't it be nice — sorry, not be sarcastic toward anyone who's so comfortable in their skin (and / or loaded), it's just never been me.

On #b, looks like I screwed up my numbering.

On #a, I wonder the same frequently: do they need to be asked? The facile Socratic retort doesn't apply I think; and yet if there is ever a time to do perhaps this precisely is the time . . .?
One thing for sure, and no one every said I wasn't picky about language, but the logic of "at this moment"
Does miss the primary fact of what it means to be confronted "prematurely" with death.
The Moment becomes This one, for better or worse.
The next moment may never come.

And how can I resist the return to aleatory Marxism, above, to note again that
"The lonely moment of the last instance never comes"?
Perhaps it's time for me to reevaluate that proposition considering my new context . . .

Posted by Mr. Jones at 7:15 PM

8:25 PM, July 15, 2006

STAND UP TO CANCER - It Sucks

2009-06-10T13:17:00.007-06:00

FOR IMMEDIATE RELEASE

STAND UP TO CANCER AWARDS $18 MILLION TO TGEN AND UNIVERSITY OF PENNSYLVANIA FOR PANCREATIC
CANCER RESEARCH

President and CEO of the Pancreatic Cancer Action Network to
Serve as Patient Advocate

EL SEGUNDO, CA – (May 27, 2009) –The Translational Genomics Research Institute (TGen) and the University of Pennsylvania (Penn) will receive $18 million to research pancreatic cancer, Stand Up to Cancer (SU2C) announced today. Dr. Daniel Von Hoff, TGen's Physician-In-Chief, and Dr. Craig B. Thompson, Director of the Abramson Cancer Center at Penn, are co-leaders of SU2C pancreatic cancer "Dream Team,'' which will lead a three-year investigation into new approaches to treating pancreatic cancer. Julie Fleshman, president and CEO of the Pancreatic Cancer Action Network will serve as patient advocate of the pancreatic cancer Dream Team.

“The $18 million awarded today for pancreatic cancer is a significant step in the fight against pancreatic cancer, a disease that has seen very little scientific progress over the past few decades due to the lack of funding for research,” stated Fleshman. “I am honored to serve as patient advocate on the pancreatic cancer Dream Team and look forward to working with Dr. Von Hoff and Dr. Thompson as they begin this very important project.”

The $18 million to TGen and Penn was the largest single grant among five awards, totaling $74 million, announced by SU2C, a philanthropic group created by cancer scientists and members of the entertainment industry a year ago today to quickly turn scientific discoveries into ways to care for cancer patients.

The goal of the pancreatic cancer Dream Team research project – "Cutting Off the Fuel Supply'' – is to develop tests, using advanced imaging techniques, to determine what nutrients pancreatic cancer cells require to fuel their growth and survival. Understanding the cell's fuel supply will help scientists develop more individualized treatments with fewer side effects.

TGen and its clinical partner at TCRS will launch a series of innovative clinical trials in advanced pancreatic cancer. These clinical trials will be designed to deprive pancreatic tumors of crucial nutrients, thereby cutting off the fuel supply. Other clinical sites in the study are at Penn in Philadelphia and at John Hopkins University in Baltimore.

Pancreatic cancer is the fourth leading cause of cancer death in the United States. In 2009, 42,470 people will be diagnosed with pancreatic cancer and 35,240 will die. The five year survival rate is 5 percent, making pancreatic cancer the most lethal among leading cancer killers.

The TGen-Penn team will combine translational methods developed at the University of Pennsylvania with individualized-therapies emphasized by TGen to rapidly move laboratory findings to bedside treatments, benefiting pancreatic cancer patients as quickly as possible. They will test the drugs in combination with existing standard chemotherapy, with the hope of improving quality of life while increasing the percentage of patients surviving beyond one year.

“This project is critical to extending the lives of pancreatic cancer patients; 75 percent die within the first year of diagnosis because of the lack of effective treatments,” added Fleshman. “We are hopeful the pancreatic cancer Dream Team can change this statistic through their collaboration.”

To learn more about the Pancreatic Cancer Action Network, visit www.pancan.org. And, for more information on the other Dream Teams, visit www.su2c.org.

About the Pancreatic Cancer Action Network
The Pancreatic Cancer Action Network is the only national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization raises money for direct private funding of research—and advocates for more aggressive federal research funding of medical breakthroughs in prevention, diagnosis and treatment of pancreatic cancer.

The Pancreatic Cancer Action Network fills the void of information and options by giving patients and caregivers reliable, personalized information they need to make informed decisions. We create a sense of hope and community so no one has to face pancreatic cancer alone. The organization helps support individuals and communities all across the country to work together to raise awareness and funds to find a cure for pancreatic cancer.

About Stand Up To Cancer
The Stand Up To Cancer (SU2C) movement raises funds to hasten the pace of groundbreaking translational research that can get new therapies to patients quickly and save lives. In 2007, a group of women whose lives have all been affected by cancer in profound ways began working together to marshal the resources of the media and entertainment industries in the fight against the disease. For more information about Stand Up To Cancer, please visit www.su2c.org.

# # #

CONTACT:

Jennifer Reeves
Public Relations Manager
Pancreatic Cancer Action Network
Direct: 310-321-6542
Email: jreeves@pancan.org

About PanCAN | Join our Mailing List || Contact Us | Terms/Privacy
© 2006 Pancreatic Cancer Action Network. All Rights Reserved.

Not Cancer But It Still Kills

2009-06-05T09:03:00.003-06:00

My Puppy Loves from sheri swaner on Vimeo.

UPDATED: 07/06/2009
This video, is a visual tribute to my doggies-- It is also a plea and reminder for any and all who desire to become and create a furry family, to RESPECT, regard and take responsibility for our furry family members- For they are a life long gift of love and responsibility- never to be taken for granted. One of the most precious gifts that life has to offer.

My puppies, Max who is 11 years old, Phoebe who is 7 and the lovely fur-ball Sydney is 5. Each are unique. They are sensitive, intuitive, with hearts of pure gold.

I am so grateful that I was their mother and a recipient of such unconditional love and precious puppy kisses.
I can't even envision a life without them. Yet each day,
I am having to learn how.

They are "the innocents” of a 'break up' and broken relationship. It is not fair, it is not right- and I will always be heart sick and disgusted by the choice and decision I was left to make on my own.

Max, Phoebe and Sydney are my heart and life. They made life and living worthwhile. I miss them more than I can articulate, more than I can bear.
A huge empty hole and void has been left-- I struggle to fill it up with memories of their smiles, antics, generosity and unconditional love.
I miss you, my precious pups and will love you forever, infinitely and eternally. And will always be grateful you allowed me the blessing, the gift,
of being your Mom.

The following video contains some of my favorite and most cherished visual memories of
"My Puppy Loves."

The poem is written in honor of them;
for the many years of gracious, unconditional love and joy they so graciously offered me--
everyday and in every way.

Friday, March 27, 2009

Dedicated to:
CHAPIN, MAX, PHOEBE and Sydney--
My Love Puppies.

Music by: Livingston Taylor, singing "I Will."

“You are my other eyes that see above the clouds;
My other ears that hear above the winds
and clamorous demands.
You are the part of me that can reach out into the sea-
And see, with crystal blue clarity.

You have treated me like I am your reason for being;
At times like this, knowing that, has brought me such comfort.
You are my babies; my lover bums,
The ‘people’ I enjoy being with the most.

I love the way you rest against my leg;
the thumping and wagging of three tails!

I am sorry for the times we went out of town
or on vacation, even for just one night--
I know it was confusing and scary.
(I think it makes you sick with worry when you can’t go along to care for me.)

When I am wrong, you are gracious
and easy to forgive.

When I am sad or hurt, You all become clowns;
Running around on your collective bottoms,
Jumping on top of one another,
Sneakily stealing more socks!
You magnify your antics--
Until I smile and laugh again.

When I am happy, your joy is limitless
and inexhaustible.
When I am a fool, you ignore it.
When I succeed, you want to tell everyone.
(Little braggarts)

Without my three precious pups, I am just another person.
With them, I am unique, a Mother, with the ability to show and spread kindness,
Unconditional Love, as I learn more life lessons.
It is because of you that
I have learned about LOVE.

I have learned the importance of forgiveness.
The beauty of gratitude.
You epitomize and define the word LOYALTY-
And have taught me the meaning of true devotion.

With you, I know a secret comfort and a private peace found no where else.
You bring me understanding and comfort, during the times when I am sad or confused.
You watched over me, with a gentle nudge or kiss,
When I lost my brother and mother.

Your heads on my knee or foot --
Brings reassurance, comfort and understanding
From any human hurt or pain

Your presence, either by my side, or in my heart,
Has shielded and protected me against my fears--
Of dark and unknown things and places--

The aches of my heart are minimized
By your countless smiles and unwavering understanding.

One of my most favorite memory-
Is how you greet me when I come home;
Whether I am gone ten minutes or Six hours
Your reaction is the same:
You scurry around looking for a favorite toy or bone
To give and present me with.
And for whatever reason
You are ALWAYS happy to see me.
(You little tail waggers)

You promised to wait for me... whenever... wherever
In case I need you...
(Of course I do.)
For this, I am especially grateful.
I know I will always need and think of you.

You have made my life better;
Complete and whole--
Because of you,
I am a far better person.

Besides, You are just my dogs--
(That sentence speaks volumes of what we share)
All three of you are:

My Family, My Heart.

I love you with all of my heart, always and forever.
Your Mother,

Sheri

Cancer Survivor Manifesto by Donna Trussell

2009-06-04T20:44:00.003-06:00

Kate Winslet & Jim Carrey in Eternal Sunshine of the Spotless Mind (2004)

Cancer Survivor Manifesto
June 3, 2009 by donnatrussell

“I am not a concept.”

Famous last words from Clementine, aka the glorious Kate Winslet in the best love story you’ve never seen, Eternal Sunshine of the Spotless Mind.

Like Clementine, I too am not a concept, but I am sometimes treated like one.

I am a cancer survivor, but I am not brave. I’m chicken. That can be a good thing, though. I can be a very squeaky wheel. When you have cancer, even the smallest advantage counts.

I am a cancer survivor, but I will not make a better friend to you than someone who is not. Most likely I’ll be worse. I have been traumatized. I can be mean. I can find fault with almost anything you say or do. And you can’t get me on it, because I’m always on home base.

I am a cancer survivor, but I am not more spiritual than you or anyone else. You think because I’ve been sick I’m closer to God? How do know what I’ve been saying to God? Could be things that are unprintable.

I am a cancer survivor, not the embodiment of loved ones who’ve abandoned you in your time of need. I know it can feel that way. Sometimes it seems like everyone — even a casual acquaintance — who walks away is deserting you. You want to grab a leg and plead: Take me with you to your world.

I am a cancer survivor, but I can not make up for the life that once stretched out before you. I realize I am a poor substitute. But so are you, for me.

I am a cancer survivor, but I am not civic minded. I do not want to bake cakes. I do not want to ask people for donations. I do not want to attend meetings in windowless rooms.

I don’t know how long I’ve got. I just want to be. More than the most zen monk or holiest priest you’ve ever met, I just want to be.

In Eternal Sunshine of the Spotless Mind Clementine tells her lover she is not a concept. She’s just a screwed-up girl looking for a little peace of mind.

Amen, Clementine. Who more than you deserves it? Who more than me?

Posted in Cancer, Film | Tagged cancer survivor, eternal sunshine, kate winslet | No Comments
Comments RSS

Thank you Donna,

for yet another incredible, reflective, honest post on cancer.

I appreciate and love your mind and passion-

and will always be grateful we 'bumped into' one another,

as I continue to learn and be in awe of you.

You and Scott would have been great pals--

I already believe you are 'soul mates.'

Sheri

Dante's Inferno and The Overwhelming Question

2009-04-17T01:41:00.006-06:00

"...Having a keen eye on the world, feeling experiences with an open sensitivity,
if at times with too much sensitivity, caring about people (not all, I’m neither saint nor altruist), having the good or ill fortune to be placed in some odd experiences,
Also at times having the stones to walk head first into others.
Those, I think, make something good of a life.

This is all unplanned, like my death, there is no outline to guide me through this piece,
there is no map despite my fondness for maps, literal and metaphorical.
(I picked up a great copy of a newish translation of Dante’s Inferno recently,
translated as Hell, and it was not the quality of the words I wanted,
it was the maps and diagrams.
It’s laid out graphically, not scenes of torture, not Blakean drawings of the mystic,
but nearly architectural sketches of what is where, what one might expect
in the space of experience. (It explains in part why one of my only published
essays deals with "cartographies of utopia.")
This is extemporaneous. What do you make of that?
I too don’t know. It’s an anti-eulogy. It’s an anti-systematic handbook.
If so, then for what? It’s simply what I have. All I have.

In the poesis, then, what is it that feels good?
What kind of making brings you pleasure in addition to warding off the unpleasure
that naturally comes to us all? In doing- what have you lost?
Truly, beautifully lost? Where are those doings? And now, too late,
I only start to see how crucial it is to find them.
I’ve had hundreds and hundreds of questions put to me since my diagnosis,
and more accurately my prognosis, was made public,
many of them have been posted on Do Not Go Gentle, many discussed there.
Most elsewhere. Many are repeats, many, candidly speaking, are uninsightful —
but how many of us know just what to say or ask? I don’t begrudge any of them really.
Some just seem to have cut to the heart of the things: what will you do that matters?
And why do those things?
No doubt I’ll have a pretty good sense of this in about three months or so,
when the clock really steps up its pace, when my timeline starts to deviate radically
from most all of yours. Then I’ll know something more concretely.
Pause for thought.

One thing of which I’m sure, it’s not distraction.
Travel is fine, fun is fine, shopping is fine, responsible debauchery too.
There is an amazing book to be written on Distraction Theory,
I haven’t gotten to it, though I have notes everywhere, it hasn’t been written.
But it’s out there in the future. I do know, however,
that distraction is almost an insult to dying consciously, dare I use the cliché,
of dying with dignity. Again, I see nothing wrong with travel, fun, debauchery,
but they are not [it] Not for me, and I’m not sure that I can offer any further
explanation of why, they just miss the point, by definition.

Distraction is the activity that averts your eyes from seeing what is really happening.
There might be no outside of ideology, but distraction is the indulgence in ideology.
(e.g., Think fascism.) Just as faith, in my view, is the escape from critical thinking.
Certain dispositions require these, so be it, it’s not something we have much control of:
it’s what highlights the crucial difference between Jung and Freud.
The former believes too much in a voluntarist psychology, he must explain the psyche
and twist it so as to leave a possible space for the I to act freely;
the latter knows the determinist web we find ourselves caught in,
if we're lucky we find ourselves.

Marx saw it with political economy and history, faults aside.
Boils on his backside keeping him from sitting to finish Capital.
Nietzsche saw it with society’s morals and values, faults and all.
Arms wrapped around a beaten horse in madness.

So that is the base, the substructure if you will, for how to think of doing. In the doing the key aspect I keep seeing is a degree of choice within the circumstances I find myself in.
That is, what will I do with what I have? What will I be able to do?
What are my desires and where do they mesh with the doing?
It’s still hard to believe that Old Man Eliot could write this, at age 24:

“To have squeezed the universe into a ball / To roll it toward some overwhelming question,”

and then, in fact, earlier in the poem, the question itself.
In short, “Do I dare / Disturb the universe?” That is the overwhelming question.
How to begin? How should I presume? Yes. Yes.
Worse and more overwhelming still, however, is to ask
and only to ask and to leave it at that,
and that is Prufrock’s curse."

. . . The curse of J. Alfred Prufrock

Scott H Swaner
07-26-06 "The Overwhelming Question"

ts eliot

dante’s inferno

"If I thought my answer were given
to anyone who would ever return to the world,
this flame would stand still without moving any further.
But since never from this abyss
has anyone ever returned alive, if what I hear is true,
without fear of infamy I answer you."[10]

Words From A Friend Who Watched his Best Friend Die from Pancreatic Cancer

2009-03-29T21:30:00.004-06:00

Reposted from Scott's original Post.

A Guest Blog by Frank Chiarella,

One of Scott's dearest friends, and certainly one of mine.

Always and Forever, Frank, I love you.

You offered and Gave Scott unconditional love and Friendship

from the time you met him until he died.

You also provided my Mom and I--

A feeling of peace and safety. I am so sorry about the recent death of your father.

You hold a special place in my heart--

Always Have and always will.

Sheri

Tuesday, August 22, 2006
8.22.06, Guest Blog. Melancholy and Mystery of Family - A Salt Lake Journey by FGC

[Hey. Here's going to be a Guest Blog from Frank, from the Utah trip last week, a few days old but it's the process of digesting and the digest of processing that was required. Frank also gave it to me two days ago and the remainder is my process of putting off a bit, as is my wont. Today's Franky Scale is an 8, physically pretty good, emotionally very good, a visit from the Disenchanted Princess begins. Also, Mme X had a momentous day that I'm happy about and glad to share part of, so these things add up. Huge congrats to you X. Now, I'm just going to check some edits on the post and will be back with it shortly, tonight. I'll leave this up for most of tomorrow, and if I come with a post of substance I'll put it up at night. Peace.]

Guest Blog:

The Melancholy and Mystery of Family – A Salt Lake Journey.

Traveling across the country to visit a dying friend sucks. Never mind the crowds, crying babies, shoe removal and metal objects at the security points. It’s the anxiety of seeing your dying friend and the fact that you are fucking helpless to fix him. My visit with Mr. Jones was not my last precious moments with him but it crosses your mind. Is this the last time?

My visit with Mr. Jones and his family was bittersweet. When it comes to talking about families and the nuisances between all the players –well…. People in glasses houses, if you catch my drift. Three older sisters, a saint of a mother, a nonexistent father, partners, nephews, beautiful babies, the best fucking carrot cake I still think about, and the ubiquitous drama that exists between all families. A friend once told me spending time with families is like being around fish. After three days they start to stink. Amazingly,
It was five days and the fish remained edible.

We all cope with loss differently. I tend to cry a lot. I think about the living Scott and I have shared and put the impending death of my friend out of my mind until we started to talk about what to leave behind and executing a will. Then it hits you. That is living in the now, the harsh reality of losing a loved one, family or friend. It’s reality punching you in the Adam's apple, you can’t talk or even breathe…. So you just listen. Listen to your friend – Always.

The drama started before I even arrived at Sheri and Stepheni’s. The details are hard to grasp – almost unbelievable, and you wonder what the fuck was the person thinking. So I listened and listened more, digesting the events of earlier that day that I wasn’t around to see. A conflict of sorts between Mr. J and someone close to him. We all cope differently – Right?
Mr. Jones manned up and settled that one.

I spent hours with Sheri and Steph, and there was great pain in that too, the impending unbearable loss of a brother who may be put on a pedestal but I have to say… rightly so. I stood under a full moon with a grieving sister who no doubt loves her brother and we tried to make sense of the senseless.

I visited Stepheni at her office to steal her wheels and met her coworkers,
Who all knew Mr. Jones from this blog. The palpable concern and genuine emotion from all of them was there too; more coping skills and support from distantly related, somewhat anonymous blog readers, who were in the midst of a dying cyber celebrity.
Greetings and gratitude to you guys at the Data Center from Mr. McMahon,
(ask Steph to explain that one).

The big Sunday family get together was marred somewhat by the lack of some family not posting, showing up, on what will most likely be the last time you will all be together…at least with Scott in SLC. I can’t remember the excuse given for why “they” did not come, that is something they will have to live with.
Sue and Susan were fantastic hosts and coping skills were again ever present-- with good food, conversation, and stories; and for the few times when the harsh reality of Mr. Jones’s condition slipped in, I was aided with help from my “nurse” who made the name “Collins” proud.
To all Scott’s nieces and nephews you were huge to come and show your uncle how much you care. In the end it is your family that will always come through. After the party, Mr. J and I paid our respects to Daniel at his grave and he reflected on his own loss, losing Daniel. The mystery of his nephew’s life and death still haunts him. The sun began to fall and cast long shadows on the tombstones as we left, That moment will remain with me forever.

Finally, how will I ever forget looking into the eyes of a grieving mother struggling with the loss of her only son? Nadine, you will always be in my heart. If the miracle you want happens I will sign up with Mr. Smith. Your bran muffins and carrot cake are made with huge love, and as I walked by the pan of carrot cake and stole another fraction of your cake, each time I realized food is yet another coping program. It is also comforting, knowing it was made by you with love. Nadine, I love you for your honesty and admire your faith.
More importantly, thank you for giving me the pleasure of knowing your son.
I hope to one day share all your infinite wisdom with my own family, along with my many memories of your son.

Sheri and Steph* – thank you for your hospitality again – I love you both!
Mr. Jones….. I am always listening. NO pain please! Do what ever it takes….but please…no pain for you.

FGC

Posted by Mr. Jones at 10:33 PM

2 COMMENTS:

Slarry said...
Dear Mr. Frank:  I am a grieving sister and you, the loyal and ultimate ( grieving) friend. We were as one, under the full moon that night; our tears flowing freely, taking solace in each other’s company. Completely unified in the knowledge, that he, Mr. Jones, is unique in all the world. The thought of him not being available to learn, love and laugh with, the loss of Scott--- the most unbearable pain we could imagine.   You are like my “other brother”-- such fine and similar characteristics; characteristics and gifts that Mr. Jones has always freely, unconditionally provided and offered me: feelings of safety, a sense of calm and stability, keeping me grounded and the warmth and comfort that can come, when one feels understood by a sibling and a loyal friend. I thank both you and Scott for that-- for years of making me feel understood and loved.  What a gift you are ... such joy, comfort and renewed strength you brought with you from New York, showering it on every one of us. For Steph and I, you truly are our favorite. Not only a term of endearment that we have always said concerning you; you are the real deal, our dear, dear friend, and for me personally, like a second brother. Thank you for that. We love you more than we can articulate, probably more than you know.  Your genuine attentiveness, concern and admiration towards our Mother, probably added years to her life. I want to thank you for that and more. Sometimes the one’s who deserve our admiration the most, the people who teach and love us unconditionally, get thanked less often. Thank you for appreciating and enjoying Scott’s Mom, my Mom, as we do. She is a Saint and does make the best Bran muffins. But you also scored a full pan of carrot cake as well. : ) That is huge, my friend.  Other than mine and Steph’s love and gratitude for you and how you have helped us through many emotional and difficult moments, I mostly want to thank you and acknowledge the great friendship you and Scott share. It is a thing of sheer beauty-- and helps this grieving sister, feel a little less anxious about my brother’s impending death.   I try not to think about it-- try and stay present in the here and now, but the fact remains that my favorite person is suffering unimaginable pain and having his beautiful life, his beautiful mind cut far too short. This is where the senselessness comes, my trying to understand and believe that this is really happening. And it does bring with it questions about the meaning and purpose of life--- why Scott? Why a terminal cancer? He is the healthiest man I know. And especially, why my favorite person, the one I lean on and learn from the most? The one person in our family, other than our Mother, who has the most to offer this world.
I will never understand.  And to my brother: reading, hearing about and observing, at times, your level of discomfort, anguish and pain, is so harsh and unbearable. I hate the pain. I hate that you are suffering and that there is not one stinking thing I can do about it. I can’t fix it. But I am here and I can listen, always.  Thank you Mr. Frank for writing your third guest blog. For stepping up and having the courage to tell it like it is. The “no shows,” the absent and anonymous father--- but also, and most importantly, appreciating the greatness and unique impact that my brother has on others. Also, for the perfect example and a testament to true friendship. You are a class act, my friend. Selfless, and darn influential as well. You too, leaving your mark- imprints in the hearts of many.  You are huge Franky and we love you. Can’t wait to see you again. This is not good-bye. My plan is to be wherever my brother is. So I will hook up with you there soon. Hopefully, there will be a hot tub for you to splash around in. I’ll try not to peek. : )   Big, big love to my brother. And to Ms. X, I congratulate and celebrate you too.
Scott, you have some great and supportive friends. So loving, so loyal, so cool. But really, how could one not be drawn to you? Don’t worry-- I won’t do the pedestal thing. It is just that I love and care for you so much and for so many reasons. You have been an unequalled gift in my life, equally as long. You remain so, and always and forever, will be my most precious.   
Thank you again, franky. And love you most and infinitely my brother.   xo, Sheri  
Give Gill, the Princess and Ted a hug for me.

8:28 AM, August 23, 2006
34DD said...
Wow! - it's hard to top that comment so I won't dare try. I'm just glad that Francis was able to write down his thoughts about the trip to see Mr. J - the stories have been spilling out all week. Thanks to S & S for taking such great care of my boy & your boy & to your mom who kept them well fed! Everyone needs a little comfort food now and then.   Mr Jonsey - I'm psyched that yesterday was an 8. I hope today is an 11. No more pain. Please tell Miss K we said HEEEEYYYYY and give her a squeeze for me (wink wink :) oxoxoxo lot's of love and good thoughts from NY.

ADDENDUM: Sir Frank, thank you for this and many, many other acts of unconditional loveand Grace. Scott loved you so much- but you already know that. Please know that we do too. Hope this finds you well.

Forever & Always, you truly are our FAVORITE! loves, Sheri and Steph*

* deleted. 03/28/09

Photos Speak a Thousand Words

2009-02-15T16:17:00.004-07:00

Various photos of Mr. Jones (aka Scott.) Happy times, filled with fond memories.

He flies.

He eats.

He talks.

He reads.

Our Beloved Mom, Nadine Swaner

2009-01-14T17:15:00.002-07:00

January 13, 2009

TWO YEARS AGO TODAY:
We lost our beloved Mother:

NADINE COX SWANER

September 13, 1927 ---- January 13, 2006

Saturday, January 13, 2007

Dear family, friends and loved ones,
Today, at 3:25 p.m., our wonderful, beautiful Mother, Spouse, Grandmother,
Aunt and friend,
Nadine Cox Swaner, died at the Huntsman Cancer Institute;
Surrounded by her family.

We held her hands, sang to her, and read her stories.
Stories, that for years and years she read to us.
We stood around her, listening to her breathe-
Even, and especially, as it became less frequent and more shallow.
Thinking, just how beautiful and complete she was.
How formidable, how strong, how determined and selfless.
And yes, she did make the best Carrot Cake.

It was only one week ago that we were together with many of you,
As we grieved, honored and paid tribute to our brother, her son, Scott.
They were such dear and tender friends;
Their bond and love for one another was deeper and stronger
than one could imagine.
This is a tragic and unexpected loss.
We can only hope they are together,
now both free from pain-
Together, continuing to make a difference.
Together, glowing,
Together, teaching.

The loss of our Mom, the loss of a Mother is especially difficult.
She has loved, protected and taught us so much.
She is unique in all the world.
We count ourselves particularly lucky and blessed to have been hers.

She is grand, eloquent, beautiful, selfless and long suffering.
She will be remembered most for her graciousness, generosity,
unconditional love and magnificent strength.
She lived a determined and purposeful life. Always.
She is the strongest woman we know.
Her faith and love for her Heavenly Father is unparalleled.

Our Mom was a gentle woman, with a twinkle in her eyes
And a smile that could light up every room and brighten any heart.
She brightened all of ours.

We love you Mom! Infinitely and Eternally.
We will miss you more than you will ever know.
Our hearts are broken and we are so sad.

No one, and nothing prepares one adequately for the loss, the death of your Mother.
We promise that we will love and cling to each other, forever and always
And think of you every minute of every day-
We are grateful for every moment and memory we shared with you.

Loves,

Hal, Sue, Sheri, Stacey ( and Scott )

Please feel free to contact us and we will help as best we can.

Sue Swaner: albeez_90@hotmail.com
Sheri Swaner: sschapin50@gmail.com
Stacey Swaner Moore: pancreasboy@comcast.net
Harold Swaner: hbswaner1@gmail.com

A Mother's Love
~
A mother's love determines how  we love ourselves and others. 
There is no sky we'll ever see 
Not lit by that first love.
Stripped of love, the universe
 Would drive us mad with pain; 
But we are born into a world 
That greets our cries with joy.
How much I owe you for the kiss 
That told me who I was.
 The greatest gift--a love of life-- Lay laughing in your eyes.

Because of you my world still has 
The soft grace of your smile; 
And every wind of fortune bears 
The scent of your caress.

Nicholas Gordon

Happy Birthday, Mr. Monkey Man!!!

2009-01-06T16:44:00.006-07:00

January 5, 2009

Yes, another few words about Scott.
It is, or would have been, his 41st birthday tomorrow!
January 6, 1968

That's HUGE!
Borrowing from his original post,
YOU'LL HAVE TO LOAN ME PAIN--
Wednesday, May 17, 2006, with a few memories and recollections
about Scott and our Mom, Nadine, who we also lost to Cancer.
You are both loved. You are both missed.
I will love both of you forever and miss you infinitely as long.

Loves,

Sheri

You'll Have To Loan Me Pain" - life, death, love

A gentle memory and recollection, borrowed from Scott's blog.
--sas

Wednesday, May 17, 2006

5.17.06, You'll Have to Loan Me Pain...

Here is the following poem I promised, the poem following the
Creeley one (from last post)--in my convoluted mind.

From e.e. cummings' book No Thanks. Wonderfully titled, cummings being too
much before his time had the manuscript rejected
by Farrar & Rinehart, Simon & Schuster, ... Knopf, Dutton, Harper's, Scribner's,
and many, many others.

So the title is "No Thanks" and you open the books to see
"To: Farrar & Rinehart,..." and all the other myopic editors and their employers.

The poem here, "66" it might be called, or first lined
"death (having lost) put on his universe" staggers me; and I suppose some who choose to do so can read it as a wager,
with death and love, and opening with the punch line.
(This was the primary poem that inspired me in eulogizing
my nephew Daniel Ray Luna who, talk about dumb luck, died before he started at 23--
just about one year ago. An aside.)

If it's a wager, here metaphorically death loses. In our waking wish fulfillment.

66

death(having lost)put on his universe
and yawned:it looks like rain
(they've played for timelessness
with chips of when)
that's yours;i guess
you'll have to loan me pain
to take the hearse,
see you again.

Love (having found) would up such pretty toys
as themselves could not know:
the earth tinily whirls;
while daisies grow
(and boys and girls
have whispered thus and so)
and boys with girls
to bed will go,

(Complete Poems, 1904-1962)

That, my friends, is a poem! Love and death in the lost and found;
or, the wager between the two; what boys and girls will do, though "boys" and "girls"
must be taken openly, inclusively here.
(We'd lose half my family if not... ;-) )

Enough from me. I'm off to lie on the table, and slide up and down--
"Breath in" [PAUSE]....."Hold your breath"...[PAUSE] ...
"You may now let out your breath"....[PAUSE, NOISE] "Breath in"..[PAUSE] ...
"Hold your breath"...., belly filled with two quarts of the barium juice.
And for those who haven't done it,

don't believe the comments, the barium drink is pretty much as good/bad tasting
as pep-to or mylanta or any other chalky drink.

It's a cake walk.

Too early to evaluate the day, but I'll say Franky Scale, 8,
you get at least 8 points just for the cummings' poem.

--- Mr. Jones, aka Scott

It is the beginning of a new year (2009) and a new month
(January) and the Anniversary of Scott’s death, is just over 2 weeks and two years old.
Since that time, other people whom I love and care about, whom we love and care for,
have passed away or had someone dear to them pass away.
Which is to say, we all have experienced sorrow and loss.
We stand as a unified community of feeling and experience.

I didn't use to think about death much; hardly at all.
That ended the day my 23 year old nephew, Dan, was found dead,
for not fully explained reasons, on February 25, 2005.
And so began (at least for me) a number of deaths and losses that continue to haunt me.
Learning to live with the knowledge that the older I become the more people I will lose
and miss (and the increased experiences I will have dealing and coping with death)
and the angst and pain that is sure to follow.
This is demonstrated and expressed, written with such poetic perfection
and insight by the brilliant ee cummings in his poem cited above.

Yes, I ponder more, give pause on how love affects life and death,
how they compare, contrast and intertwine with one another.

At the end of the stanza about death, cummings puts a period (.)
perhaps to symbolize that death is final. The end.
However, he puts a comma at the end of the stanza about love,
hopefully symbolizing that love lives on--
That there is no end.

This is what I believe;
That we continue to love, to live, to ponder and relate to one another,
always. Infinite in its power--love supersedes all.

I have no idea what prompted me to read this particular post from Scott's blog
or remember this particular poem. If Scott was alive, he would be turning
the BIG 41 tomorrow, January 6.
Wow, that would have been one hell of a party and celebration.
But instead of focusing and reflecting on my gratiude for his birth and life,
I am reminded that Scott’s funeral took place two years ago, on January 6, 2006,
on his birthday. *Huge Sigh*

I spoke that day (poorly, oblivious and shaken)
with our Mom, who 2 months earlier was helping Scott move into a new apartment,
was dying at the Huntsman Cancer Center, too weak to attend her son’s funeral.
She was heartbroken. She died seven days after Scott’s funeral, January 13, 2007.
That, I’m sure, is what brought me to his blog and this particular post today.

Honestly, the shock and pain of losing my two favorite people so close together
knocked me over like the thud of a giant 4” x 4”. It was debilitating and unreal.

I have been thinking of Scott quite a bit lately, he’s in my dreams and he’s here while I’m awake.
I miss him. I miss his beautiful mind. I miss the conversations
that prompt and beg me to think--
I miss him being around; always available to laugh with, to read something new he wrote, and more,
the constancy and comfort he brought to my life.

And my Mom--how does one express and articulate the loss of your Mother?
She laughed and cried with me. While I was growing up, she read to me every single night before
I went to sleep. She was an incredible woman- she not only taught me about life,
she was my life.
Anything really worthwhile about me comes from the influence and love
from my Mother and brother. Scott and Nade. Two Little jewels.

So, for whatever reason, I am passing this along for anyone who may be feeling similarly,
whether about Scott or anyone they miss (have loved and lost).
Perhaps this particular post struck me because Scott sounds so alive; vibrant, excited,
brimming with ideas and passion! I can see and hear him saying,
“That my friends is a poem!” Grinning from ear to ear.
Even, and in spite of, facing death, Scott came to his crossroads,
his challenge, and jumped full in!
Continuing to live as bravely, as gracefully, and as determined as before.

Maybe, too, because I am facing my own crossroads; my own "leap of faith,"
during a time in my life when I’m experiencing changes, and another type of loss.
Pathetic and puny in comparison to what Scott faced,
but real and challenging, nonetheless.

Life and time are precious and priceless. I am grateful for and indebted to each of you.
You are a gift I will always be thankful for. I truly hope this finds all of you well.

Always,

Sheri

The following is a poem I wrote.
I'm sharing it, knowing that most, if not all of you write
far superior to me.
But hey, I enjoy it and I'm learning as I write more.

Pipe Dreams

Concrete blogs, gods, and dilemmas

everyday complexities
that foster, breed chaos
and confusion.
(they) are not straight, forward
linear.
emerging
responds to fused relations,
dilemmas, of choice-
or toleration
then of pain.

it is then, when,
stillness strains, with questions hushed,
the imagination stutters,
narrowing the creation, the poetic-
the pipe dream of future, nullified,
then dies.

prudery attachments,
academic, robotic responses (taken to heart)
“don’t take [ it ] so hard ... “
these sentiments echoing
in my brain,
bang against my ears,
stab and creep into my tatered heart.
creating fragments, tiny pieces, “of what?”
whatever....
the arteries have hardened, (like concrete)
cracks, fissures, splitting-
upon the shaken ground.

“no, nothing is simple .... “
the humanness of dilemmas, connecting,
of feeling
lie beyond that which is attainable,
even in fantasy
even in thought.

there is no (one) to embrace
and everything (is) more shallow,
empty and complex
than ever before.

‘no,’ like him, "i cannot shake this world .... “

-- Sheri Swaner

"So, I get myself up, brush myself off- and start all over again."

Happy Birthday, Monkey Boy!

Between Here And Gone by Mary Chapin Carpenter

All poems, posts, blogs, music are regulated
by copyright law.

A Little Chocolate Cheebus

2008-12-28T11:49:00.003-07:00

One of Scott's favorite songs for Sunday and at Christmas Time.

"Chocolate Jesus" by the great Tom Waits

Life: The Crash Course Version

2008-12-14T01:46:00.006-07:00

[My brother passed away from Pancreatic Cancer almost 2 years ago on December 20th. 2006
He was 38 years old. This is an entry from my personal journal]

LIFE: The Crash Course Version

"death and dying are the easy parts, it's life without someone that's
hard, the harshest... and as bad as this feels now, it is not the worst part..."

Saturday April 29, 2006

JOURNAL ENTRY #6: ORAL CHEMOTHERAPY

Some bewildered musings and deeper thoughts, one Saturday morning with my brother:

My brother Scott has developed his own scale of pain in a blog he
created. It differentiates between physical and emotional pain.
Consequentially, there are always two numbers-one for how he is
feeling emotionally, the second indicates how painful the
physical, the tangible pain is from the cancer that disrupts
and poisons his body daily...how much he hurts.

Today I'm writing about my own pain, as one who loves and cares for
him. How my brother's pain, anguish and befuddlement, as the impending end of his life draws ever near, affects me.
And yes, it is painful-- oh, so very much and in so many ways.

As of yet I have found no scale worthy enough, no barometer
or gauge I can go to or look at, that adequately describes the pain I am feeling.
I don't think I even want to. It makes it too real. Yet no matter
how hard I try to distract myself, the agony is ever present. It
follows and surrounds me like a dark ominous cloud.

We started the day with our new morning ritual; a cup of freshly
brewed coffee in hand with me asking what he would like for breakfast.
Food is a sore subject--he has no taste buds and no appetite. So I
am learning to approach the topic delicately, respectfully, though at
times carelessly, in avoidance--as if his diet is of no consequence.
However, today was different. He didn't respond in his usual way;
"Sheri, I've told you...I don't care what I eat anymore...if it
tastes good or not, even something I used to enjoy...Let me just get
something myself. " Today, instead, he said, "Oh, I can't eat
anything yet. Today is an oral chemo day. I have to wait 20 more
minutes until I can take the chemo pills, then I can eat a little
something ... but then, yeah, something for breakfast would be great."

I was fine for a moment. Then this awkward silence descended on me.
Both of us realizing, simultaneously, that this one paltry response,
actually spoke volumes. We never used to talk about cancer or
chemotherapy, but more significantly, we never spoke about HIS having
Cancer, let alone the significance of taking chemotherapy pills. And
it is not even a pill that will cure him. It is only a pill that may
prolong his life, hopefully, a few more months, if we are lucky.

Then my brother asked me, half joking, half to break the unbearable
silence, if it bothered me if he took "the pills" in front of me?
Bothered me? I could feel the tears begin to well up, my barrier of
courage cracking as I began to weep. I cannot recall my answer, all
of the words I spoke. Only that they were feeble, at best, compared to
all that I was feeling. I answered, though hardly discernible, that
"yes, it actually bothers me quite a bit ... not that you are doing
it in front of me...just the mere fact that you have to take them at
all ... " "It just makes me so sad...so mad," and the tears
freely rolled down my face, like waves crashing onto the shore.

I discovered this poem as I was searching for an Anne Morrow
Lindbergh quote. It attempts to express how and what I was feeling
during my Saturday morning session with my brother.

Fairy tales For My Brother

It seems wherever I go,
People come into my life and go out.
Touching me where I can feel,
Then leaving only a memory
Like the gossamer fairy tales of children easily forgotten.
And I wasn't through knowing them.

How do I know
Whom I am seeing for the last time?
How do you halt your life
To gather and keep fairy tales from losing their magic?

So come.
Brush against the walls of my life
And stay long enough for us to know each other,
Even though you know we will have to part some time.
And we both know the longer you stay,
The more I will want you back when you have gone.

But come anyway.
For fairy tales are the happiest stories we know,
And great books are made of little chapters.
-anonymous

This is my journal entry for today. The significance of watching my
younger and by all accounts, except for his having terminal pancreatic cancer,
healthier brother ingest oral chemotherapy, oral toxic poison, to steal a bit more life.

This is a journey, an experience that no one prepares you for. There
is no rule book to guide me through my anguish and sorrow. And so I
depend on the strength and comfort of my friends, partner, family and
loved ones, to help get me though this. Not for myself-- but so that
I can be of use to him as he becomes weaker, as I know he will.

What makes this so uncanny and peculiar is, I still find myself relying
and depend on him to assist me with the answers on “how to cope” and as a source of strength and balance,
which is one of the many roles he plays in my life.
Is this thoughtless, selfish? If it is, it certainly isn’t intentional.
Just what I've grown to expect; his wisdom and perspective,
in a life that doesn't always make sense to me.
I want and need to be there, for him.
Pretending this isn’t happening, behaving as if I've ever experienced anything even remotely like this,
is silly and disingenuous. Again, balance, I need to discover my own.
And yes, this scares me and I tremble at the thought.
Another reason for confronting and learning about what it is, what it will be like?
The process of losing my brother.

I will follow his lead.

Something else, another observation...As ill and weak as he is, knowing he will die soon,
and all of the thoughts and fears that come with that knowledge,
he still, as always, tries to shield and protect me from what he knows will be
my sorrow and anguish, the ominous hole of loss that his passing will bring.
The void that will become a part of my waking life. I can't even begin to imagine.

Scott has not lost, and will never lose his "magic."
His importance in my life, if anything, is even more penetrating, alive and prevalent.
The thought of losing him is the most unbearable pain I can think of.

But, "I will come anyway" and join him in his fight and struggle in
trying to make some sense of this most senseless and crude diagnosis
and disease. He is fighting for his life. I am fighting for his life--and hoping for a miracle.

As I continue to love, enjoy, learn from and honor him,
I am grateful for every moment and experience we have shared. Every thought
and stolen memory I can, and will, continue to share and remember, knowing
I was blessed with the most wondrous brother; one who amazes and overwhelms me every day.

My heart breaks a little more each day. With the swallow of a pill, a groan, a sigh,
or the pensive look of pain that hasn’t left his face since his diagnosis--
he continues and remains determined, always.
Productive, beautiful and thoughtful, constantly.

His is an amazing life. And yes, I stand amazed.

I love you, my brother.
"This is not good-bye"

Loves,

Sheri

Donna Trussell: On Cancer & Scott

2008-11-19T22:34:00.004-07:00

NOVEMBER, the time of 'Thanksgiving' and the beginning of winter chills.
It is also the last month, in 2006, when Scott was capable of writing and posting
in his blog.

November 21, 2006 was the date of Scott's last post.
Kim was kind enough to keep it up and running after their visit to Salt Lake City late November
for Thanksgiving, keeping his 'blog followers' up-dated, until and after Scott's death.

[THIS IS CANCER. THE REALITY OF CANCER]

On this day two years ago, Scott was still alive, though weak, our Mom was in the Hospital
fighting her own health issues, as she continued to hope and fight for a miracle for him.
None of us knew what we know now--
That Scott would pass away one month later, on December 20, 2006
and that our dear Mother would follow him a mere three weeks after.

All of these dates, memories are cemented in my mind, forever.
Since that time, I have had the honor of meeting some incredible people;
People who have blessed and touched my life in ways that far exceed my understanding.

One, is Donna Trussell.
Her life has also been altered by Cancer.

My thanks to her for this and many other things.

Sheri

[Please refer to Donna's blog for her post: Cancer Doesn't Care
http://donnatrussell.com/2008/10/21/cancer-doesnt-care/]

Donna Trussell
Poetry, fiction, cancer. Oh, and monsters from the id.

http://donnatrussell.com/

October 21, 2008 at 6:00 pm donnatrussell

Some excerpts form Sheri’s brother’s blog entry dated October 20, 2006.
(Scott Swaner was a poet, teacher and translator. He died of pancreatic cancer just two months after he wrote this.
He was 38 years old.)

By Donna Trussell

donotgogentle.blogspot.com

"Cut out all forms of social enjoyment. All forms that any other would understand.
And onliness (the state of being alone) results….Loved ones, friends, family are all excluded thereby, all left out cold, all left in their community, the one I’m slowly being ostracized from….No person has ordered my expulsion, no gods are angry,
rather the mindless dice of the universe, thrown by an agent with no hands,
brought by a messenger with no legs, conveyed and explained by a deaf mute diplomat….

Cancer is the capitalism of the body. It grows unchecked, until at some point it will eliminate itself by eliminating its host, its own means of production —
me / I will die at the hands of Capital as metaphor….

What is new that becomes appealing, a list:
Warmth. Absence of pain, dumbly of course and too plain.
Fantasy, a novel by Tolstoy or Balzac or Zola with the long drawn-out pans of whole swaths of society as means of escape….
To distract the mind from the Real….
To be another escape from all the necessities, the so many little must-do’s;
from pills to calories to soap and water to last-“minute” legal paperwork
like wills & DNRs to maintaining salary to “finishing” a number of professional tasks that alternate on given days from more to less important….

What else that’s new: small moments, looking elsewhere, rain through a window,
a comfortable silence, bits of sleep without dreams.
A recent one [dream] though, where I am to be tending an old friend’s young child,
who is helpless without me, and I am intensely aware of how much depends on me,
but it’s all I can do to keep myself awake and responsible and watchful and caring
and protective. My own inability to stay awake — in the middle of sleep —
keeps me from being a good babysitter.
Stuck in this unwaking state with my friend and his wife’s expectations resting heavy upon me, heavy like the sleep upon my eyelids.
The child alone with me. A nightmare but still a dream."

--Scott H Swaner

http://donotgogentle.blogspot.com/2006/10/102006-more-on-day-in-life.html

*used with permission
Scott H Swaner family foundation fund*

[posted by Donna Trussell from her blog: DONNA TRUSSELL Poetry, fiction, cancer]
http://donnatrussell.com/

LIVE LIVE LIVE "What Defines This Life?"

2008-10-29T00:05:00.004-06:00

This particular post of Mr. Jones, was originally written and posted on Friday, July 14, 2006.
He passed away a little over 5 months after writing this.
I am re-posting it for several reasons. First, because it is one of my favorites.
Secondly, Scott could have written the theme of this post at any given time in his 38 years.

Scott lived! Scott Lived! Each day of his life was purposeful and determined.
A good lesson for all of us, no?
Certainly a lesson that I need to work on; a lesson he reminded me of,
either in word or by how he lived his life; Honestly, with conviction, and determined.

What Defines This Life, What defined Scott's life?
Most of the answers are found within this post.

I miss you, Scott.
Sometimes more than I can bear... but then I remember what you asked me to do;
And I try harder. The missing never goes away, though. Ever.

Love,

Sheri

7.14.07, "What Defines This Life?" You Ask

*Franky Scale: Why just one? Started about 6, dropped to a 5 for a while till I did some pharmacological adjustment. Ended up close to 7, the day was good, saying good bye to Ms. T over crumpets and books at the Left Bank, then with Mme. X for a dinner of bar food.

*Dearest Prof. Jeong, Yonsei University,

First, I wanted to let you know that this is the right blog. I was so glad to get news of you recently, or more accurately news that my fucked-up news had reached you. And I was moved by and can imagine your reaction. It's been too long since we've seen each other and I hope, as always, only the best for you. I miss being able to drop in and discuss aleatory marxism, Althusser, and modern poetry. Whether the category "lyric" is salvageable let alone salutary . . . figuring out what Hwang Jiwoo is talking about . . . So much there left undiscussed. Also, I'm sorry if the pseudonym threw you off track, my nom de geurre, as it were. For professional reasons I witheld my real name initially and the "Mr. Jones" trope, though I haven't yet discussed its why's and wherefore's, has proven useful in unexpected ways. Let's talk soon, I'll try to email.

*There is a certain clarity I possess, or feel possessed of these days, only occasionally, usually around this hour of twilight — not meant to sound either Romantic or mystical, just noting the phenomenon — so at this time, when the combination of hunger / fullness, pain / nonpain, nausea / calm, etc. settles down below the most obvious level of consciousness, then I feel my fingers freed up (odd metaphor of the keyboard age), and a certain sense of vision accompanies this: not Blakean, or Ginsbergian (after Blake) but more Spinozist, it's almost scientific, that of a lens grinder, someone who is thinking of visual theory at the same time as rhetoric. I hope it combines to produce somthing lucid or pellucid even or even merely reflective of the clarity. Jibberish? Could be. Oxycotton? Could be.

*An Anonymous commentor posted a few questions on the post called
"What Cannot be Said" from two days ago; it ran as follows:

"question to consider (or not?)? [a] what if all questions are the wrong questions at this moment?
[b] it isn't as simple as what to do with your time;
[c] rather, what will you do regardless?

[d] not what to do in the time left, but what would you do anyways, given one week or one year?

[e] what defines the life you have chosen?" [I've added the letters for easier reference.]

The final question #e I can answer with some confidence, what defines a life, whether chosen or fallen into,
is always the same it seems: it's action, the practices of everyday life, movement, activity.
All the talk and hyperbole, all the promises and the efforts, all the intentions and the apologies,
and finally, all the ideals and the general wishes or desires — none of it means more than a passing comment in a dark bar,
in the end. Part of a failed seduction. In the middle and the beginning, too, it's nearly meaningless, however, we can more easily kid ourselves, succumb to an ideology that allows us to remain productive.
After all is said and done only the book that is published, printed, or passed around and read at least, is the book that counts. All the ideas for other books, all the drafts (in the mind) and sketchy notes, uncompiled notes don't count.
The Other ideal profession doesn't count, only the one you actually did. Me, professor, modern Korean literature, poetry, aesthetic theory. Like it or not, that's what defines me, it's where I've come. Most simply put, I can't help but think more and more surely over recent years & especially now, that only what one does is what defines one's life.

As a brief interjection, these questions have all been covered on the blog before. In fact, they're nearly the primary philosophical or psychological reason for starting, for figuring it out. That said, I'm glad they're raised again since revisiting them now and then is always a good idea. Too, things change quickly in the Big Casino.
(And too also, it's good to have comments to engage with now and then on the blog.)

Question #d is, to put it rather directly, not relevant. Not anymore, not to me during this period.
The meaning of all activity has radically changed for me since I was introduced to terminal cancer, except to the extent that I think of the act / action as described in the paragraph above.
To ask what "I" would do "regardless" (#c and #d) of this situaiton means to ignore this situation;
one would have to confront it head on and then decide to live in defiance of its reality.
I think that's somewhat counterproductive, especially in light of the numerous ephiphanies the experience affords.
So much new insight to be had from the 2x4-across-the-head nature of this new knowledge,
that not only am I mortal (of course) but that my mortality has been radically foreshortened into a number of months
I'm supposed to be able to count on my hands.
(The timeline now, based on admittedly less than ideal statistical averages, in fact puts down the number of months like this.) Finally and practically, I probably would not be concerned with writing a memoir currently without the news.
Life's obligations would push all that aside.

I suppose the latter two questions addressed would be quite on target for someone at home with eternal recurrence, someone unquestionably not possessed by the notion of "the grass is greener," someone who had made all the "perfect" life choices and was either in unquestionable love with her work or independently wealthy. Wouldn't it be nice — sorry, not be sarcastic toward anyone who's so comfortable in their skin (and / or loaded), it's just never been me.

On #b, looks like I screwed up my numbering.

On #a, I wonder the same frequently: do they need to be asked? The facile Socratic retort doesn't apply I think; and yet if there is ever a time to do perhaps this precisely is the time . . .?
One thing for sure, and no one every said I wasn't picky about language, but the logic of "at this moment"
does miss the primary fact of what it means to be confronted "prematurely" with death.
The Moment becomes This one, for better or worse.
The next moment may never come.

And how can I resist the return to aleatory marxism, above, to note again that
"the lonely moment of the last instance never comes"?
Perhaps it's time for me to reevaluate that proposition in light of my new context . . .

Posted by Mr. Jones at 7:15 PM

8:25 PM, July 15, 2006

Slarry said...
Sat. July 15, 2006

Mr. J:

After we spoke this morning, I revisited your post from yesterday. I am so glad I did.
Throughout your eloquent writing ( and by the way, are you aware that almost everything you write; every phrase, sentence and chosen word, sounds poetic? ) --- yesterday’s post seemed especially poignant, remarkable, useful and full of insight.

Thank you for allowing me to see and learn to understand more in depth how that beautiful mind of yours works--- what you think about mortality, more specifically, your own mortality, and more so, how you have come to your conclusions. Your beliefs on life.

Also, I am glad the Professor and you were able to get in touch with one another.
That letter was endearing.

Thank you also for reminding me, that life is what you do, what you’ve done and are doing---
not just thinking and talking about.
The lesson here shouldn’t be profound, but not living, not doing, is precisely what some of us waste our time on.
Myself, by far, being one of the worse offenders.

I felt that the questions the anonymous person posted were very relevant and gave me pause. I am so aware that too many of us take life and living for granted. So, good things to think about and consider. Like me, I am so aware that currently I am merely existing, living half of the life that you are, half of the life I'm capable of. Or more to the point, you are actively living a real life. An honest and authentic one.

Because you are, and actually have, with or without the cancer that continues to threaten and shorten your time, your life----always LIVED. The cancer seems to have only made you more passionate, more directed.

I really can’t recall a time when you were not actively and anxiously engaged in life, not just professionally, but also in your desire to learn and study anything of worth.
This is why I say and refer to you as being remarkable--- most people don’t do this. I certainly don’t, but your life and words inspire me to move, to act, to do something purposeful.
This has been a theme that has defined and been a part of you for as long as I can remember. It is one of the characteristics I love and respect most about you---
your clarity, your fearlessness, your tenacity.

And for what it is worth, this is why I feel so safe around you, this is why I say you amaze me.
This is probably why Mr. Franky often refers to that beautiful mind of yours.
It is also one of the main reasons our dear nephew, Dan, held you in such esteem. He wanted to be you.
Thank you for that. What a priceless and precious gift.

And I did figure out the dashboard all by myself--- and it felt good. What a geek. : )

Love you--- and appreciate your always giving me something to think about,
and gently coaxing me along to want to do more, be better.
It gave me a nice ( loving ) kick in the buttocks.

I hope your evening is comfortable and enjoyed.

Sheri

3:26 PM, July 16, 2006
Post a Comment

About Me

Mr. Jones (Scott Swaner)
Seattle, Capitol Hill, Washington, United States
Mr. Jones, aka Scott Swaner, passed away December 20, 2006 in Seattle, WA. of Pancreatic Cancer.
This is his blog, his words, feelings and thoughts through out his journey, his fight against Cancer.

The Life and Death, or Rather the Love and Death of Daniel Ray Luna (1981-2005)

2008-10-14T14:37:00.005-06:00

This is the Eulogy Scott gave at our oldest nephews Funeral, Daniel Luna.
Daniel Ray Swaner Luna was a mere 23 years old at the time of his death.
It was unexpected, harsh, and difficult on our entire family.
Most especially, my sister, Sue and Dan's siblings.
Other than his brothers Scott was not only Dan's uncle, but his best friend and mentor.

Scott was diagnosed with Stage IV Terminal Pancreatic Cancer 13 months after eulogizing Dan.
I can only hope that they are somewhere together,
with my Mom, listening and playing Jazz, reading and writing poems-
with Scott on the Sax and Dan on the piano or guitar.

Scott's mentions Daniel in this blog on several occasions-
Dedicated at least two full posts and wrote a poem titled, The Premonition.

You can look the post up in the "search" available at the top of this post-
and hopefully, soon, I will become more fluent in the blogging process
and be able to link the post and poem here.

“The Life and Death, or Rather the Love and Death
of Daniel Ray Luna (1981-2005)—In Memoriam”

2 March 2005, Salt Lake City, Utah

How do we begin? How do we remember Daniel Ray Luna?
What do we do with our love for him now that he’s gone?

My mother told me something growing up, an aphorism, one that I always took as part of her personal store of wisdom.
Of difficult times she would say: “If it doesn’t kill us, it will only make us stronger.”
It was only much later I learned that someone before her had also said this—Nietzsche.
It made for a curious connection and it was burned into my memory.
Now another line from Nietzsche comes to mind: “—pain is the most powerful aid to mnemonics”
(On the Genealogy of Morals 61). Not that we would otherwise forget. . .

In trying to make sense of this, of death and trauma, of frustrated youth
and one amazing soul being torn from what seemed to be the whole fabric of life—
all this in Daniel’s passing—I have been looking more carefully at death to understand that fabric,
now with a gaping hole that surrounds me. Look around. It surrounds all of us.
Daniel’s departure left this hole for everyone who knew him.
Daniel’s very existence showed us that his was an amazing soul—he would either shine or extinguish,
but would not live, or could not live--like so many of us do--in the spaces in-between.
His was not a common soul. When he smiled you sensed this: he either smiled as if he knew something you didn’t,
or he laughed in complete transparency.

Since the middle of Friday night, when too many of us were ripped from an ignorant sleep,
I’ve been searching for “death.” What now? What next?
The more I looked around for “death” the more I found that another term, another experience,
always seemed to occupy the same page:
wherever I found “death” I seemed to find “love,” someone’s love.
This poem is one example:

“42. love is more thicker than forget”

love is more thicker than forget
more thinner than recall
more seldom than a wave is wet
more frequent than to fail

it is most mad and moonly
and less it shall unbe
than all the sea which only
is deeper than the sea

love is less always than to win
less never than alive
less bigger than the least begin
less littler than forgive

it is most sane and sunly
and more it cannot die
than all the sky which only
is higher than the sky (CP 530)

So there we have it, from the poet e.e. cummings: we have love and memory,
we have love over death, and we have love above all else.
Is there anything else we see with more brilliant clarity at this moment?
“That which takes place out of love takes place beyond good and evil” (Nietzsche, Beyond Good and Evil 103).
In love, in acts of love, in acts of loving memory, we are not working in conflict with someone else’s version of right
and wrong.
Today in memoriam, we are not here as believers and non-believers, as faithful and faithless,
we are here as family. The family first, the family beyond forgetting, the family of Daniel Ray.

When we think of death we are most commonly strictured in our minds by what we assume is the usual pairing of experiences and feelings—in other words, the pair, Life and Death.
This, however, begs the question: should we think of these as a natural pair?
The answer is no: rather, it should be thought as Love and Death.
Because life and death are not opposites, they are the same.
Love and death are opposed, and yet complimentary.
It is through love that death acquires meaning, it is through love that death becomes more than Nothingness with a capital “N.”
I used to know a poet who would say of poetry, and therefore of life,
that “Fear of loss is every lover’s fear.”
If death is the personification of loss, then the lover, is left alone by death,
alone to live on until released from, or reconstituted by that loss.

To state it differently, without love death means nothing, it is scientific, numerical, and perfunctory.
To say this is to disagree with e.e. cummings, elsewhere, where he writes,
“And death i think is no parentheses.”
That is the final line in one of his poems, and coupled with the line before it, we see a fuller picture:

for life’s not a paragraph
And death i think is no parentheses (CP 291).

Life, of course, as Daniel has reminded us, it simply dies: death, of course,
is already dead, leaving us with love alone.
Love alone survives.
Love alone resists.
To put it in the harshest possible light, love alone is too goddam stubborn
or stupid to know any better.
So we are left here, after Dan, either too ignorant or too intransigent, standing gaping around this frightful
rent in life’s fabric.
The gaping hole in meaning were Daniel used to stand.

How long will the edge of this fabric support us? We wonder while we weep and gaze into that oblivion.
On this side of death we are only left to remember—
with pain as the most powerful reminder; we are left to be chastened, at least a little;
and we are left to be admonished, somehow, next time, to do better.

Again, from e.e. cummings:

“dying is fine)but Death”

dying is fine)but Death

oh
baby
i

wouldn’t like

Death if Death
were
good:for

when (instead of stopping to think)you

begin to feel of it,dying
‘s miraculous
why?be

cause dying is

perfectly natural;perfectly
putting
it mildly lively(but

Death

is strictly
scientific
& artificial &

evil & legal)

we thank thee god
almighty for dying

(forgive us,o life!the sin of Death (CP 604)

And finally this, to Daniel,
whose flame burned hot before flickering and being snuffed:

death (having lost) put on his universe
and yawned:it looks like rain
(they’ve played for timelessness
with chips of when)
that’s yours;i guess
you’ll have to loan me pain
to take the hearse,
see you again. (CP 451)©©©

Scott H Swaner

© Scott H Swaner
used with permission
from the Scott H Swaner foundation fund.

A Reprise from Frank, of the Franky Scale "Mr. Jones & Family

2008-09-17T20:22:00.005-06:00

Tuesday, August 22, 2006
8.22.06, Guest Blog. Melancholy and Mystery of Family - A Salt Lake Journey by FGC

[Hey. Here's going to be a Guest Blog from Frank, from the Utah trip last week, a few days old but it's the process of digesting and the digest of processing that was required. Frank also gave it to me two days ago and the remainder is my process of putting off a bit, as is my wont. Today's Franky Scale is an 8, physically pretty good, emotionally very good, a visit from the Disenchanted Princess begins. Also, Mme X had a momentous day that I'm happy about and glad to share part of, so these things add up. Huge congrats to you X. Now, I'm just going to check some edits on the post and will be back with it shortly, tonight. I'll leave this up for most of tomorrow, and if I come with a post of substance I'll put it up at night. Peace.]

Guest Blog:

The Melancholy and Mystery of Family – A Salt Lake Journey.

Traveling across the country to visit a dying friend sucks. Never mind the crowds, crying babies, shoe removal and metal objects at the security points. It’s the anxiety of seeing your dying friend and the fact that you are fucking helpless to fix him. My visit with Mr. Jones was not my last precious moments with him but it crosses your mind. Is this the last time?

My visit with Mr. Jones and his family was bittersweet. When it comes to talking about families and the nuisances between all the players –well…. People in glasses houses, if you catch my drift. Three older sisters, a saint of a mother, a nonexistent father, partners, nephews, beautiful babies, the best fucking carrot cake I still think about, and the ubiquitous drama that exists between all families. A friend once told me spending time with families is like being around fish. After three days they start to stink. Amazingly,
It was five days and the fish remained edible.

We all cope with loss differently. I tend to cry a lot. I think about the living Scott and I have shared and put the impending death of my friend out of my mind until we started to talk about what to leave behind and executing a will. Then it hits you. That is living in the now, the harsh reality of losing a loved one, family or friend. It’s reality punching you in the Adam's apple, you can’t talk or even breathe…. So you just listen. Listen to your friend – Always.

The drama started before I even arrived at Sheri and Stepheni’s. The details are hard to grasp – almost unbelievable, and you wonder what the fuck was the person thinking. So I listened and listened more, digesting the events of earlier that day that I wasn’t around to see. A conflict of sorts between Mr. J and someone close to him. We all cope differently – Right?
Mr. Jones manned up and settled that one.

I spent hours with Sheri and Steph, and there was great pain in that too, the impending unbearable loss of a brother who may be put on a pedestal but I have to say… rightly so. I stood under a full moon with a grieving sister who no doubt loves her brother and we tried to make sense of the senseless.

I visited Stepheni at her office to steal her wheels and met her coworkers,
Who all knew Mr. Jones from this blog. The palpable concern and genuine emotion from all of them was there too; more coping skills and support from distantly related, somewhat anonymous blog readers, who were in the midst of a dying cyber celebrity.
Greetings and gratitude to you guys at the Data Center from Mr. McMahon,
(ask Steph to explain that one).

The big Sunday family get together was marred somewhat by the lack of some family not posting, showing up, on what will most likely be the last time you will all be together…at least with Scott in SLC. I can’t remember the excuse given for why “they” did not come, that is something they will have to live with.
Sue and Susan were fantastic hosts and coping skills were again ever present-- with good food, conversation, and stories; and for the few times when the harsh reality of Mr. Jones’s condition slipped in, I was aided with help from my “nurse” who made the name “Collins” proud.
To all Scott’s nieces and nephews you were huge to come and show your uncle how much you care. In the end it is your family that will always come through. After the party, Mr. J and I paid our respects to Daniel at his grave and he reflected on his own loss, losing Daniel. The mystery of his nephew’s life and death still haunts him. The sun began to fall and cast long shadows on the tombstones as we left, That moment will remain with me forever.

Finally, how will I ever forget looking into the eyes of a grieving mother struggling with the loss of her only son? Nadine, you will always be in my heart. If the miracle you want happens I will sign up with Mr. Smith. Your bran muffins and carrot cake are made with huge love, and as I walked by the pan of carrot cake and stole another fraction of your cake, each time I realized food is yet another coping program. It is also comforting, knowing it was made by you with love. Nadine, I love you for your honesty and admire your faith.
More importantly, thank you for giving me the pleasure of knowing your son.
I hope to one day share all your infinite wisdom with my own family, along with my many memories of your son.

Sheri and Steph – thank you for your hospitality again – I love you both!
Mr. Jones….. I am always listening. NO pain please! Do what ever it takes….but please…no pain for you.

FGC

Posted by Mr. Jones at 10:33 PM

2 COMMENTS:

Slarry said...
Dear Mr. Frank:  I am a grieving sister and you, the loyal and ultimate ( grieving) friend. We were as one, under the full moon that night; our tears flowing freely, taking solace in each other’s company. Completely unified in the knowledge, that he, Mr. Jones, is unique in all the world. The thought of him not being available to learn, love and laugh with, the loss of Scott--- the most unbearable pain we could imagine.   You are like my “other brother”-- such fine and similar characteristics; characteristics and gifts that Mr. Jones has always freely, unconditionally provided and offered me: feelings of safety, a sense of calm and stability, keeping me grounded and the warmth and comfort that can come, when one feels understood by a sibling and a loyal friend. I thank both you and Scott for that-- for years of making me feel understood and loved.  What a gift you are ... such joy, comfort and renewed strength you brought with you from New York, showering it on every one of us. For Steph and I, you truly are our favorite. Not only a term of endearment that we have always said concerning you; you are the real deal, our dear, dear friend, and for me personally, like a second brother. Thank you for that. We love you more than we can articulate, probably more than you know.  Your genuine attentiveness, concern and admiration towards our Mother, probably added years to her life. I want to thank you for that and more. Sometimes the one’s who deserve our admiration the most, the people who teach and love us unconditionally, get thanked less often. Thank you for appreciating and enjoying Scott’s Mom, my Mom, as we do. She is a Saint and does make the best Bran muffins. But you also scored a full pan of carrot cake as well. : ) That is huge, my friend.  Other than mine and Steph’s love and gratitude for you and how you have helped us through many emotional and difficult moments, I mostly want to thank you and acknowledge the great friendship you and Scott share. It is a thing of sheer beauty-- and helps this grieving sister, feel a little less anxious about my brother’s impending death.   I try not to think about it-- try and stay present in the here and now, but the fact remains that my favorite person is suffering unimaginable pain and having his beautiful life, his beautiful mind cut far too short. This is where the senselessness comes, my trying to understand and believe that this is really happening. And it does bring with it questions about the meaning and purpose of life--- why Scott? Why a terminal cancer? He is the healthiest man I know. And especially, why my favorite person, the one I lean on and learn from the most? The one person in our family, other than our Mother, who has the most to offer this world.
I will never understand.  And to my brother: reading, hearing about and observing, at times, your level of discomfort, anguish and pain, is so harsh and unbearable. I hate the pain. I hate that you are suffering and that there is not one stinking thing I can do about it. I can’t fix it. But I am here and I can listen, always.  Thank you Mr. Frank for writing your third guest blog. For stepping up and having the courage to tell it like it is. The “no shows,” the absent and anonymous father--- but also, and most importantly, appreciating the greatness and unique impact that my brother has on others. Also, for the perfect example and a testament to true friendship. You are a class act, my friend. Selfless, and darn influential as well. You too, leaving your mark- imprints in the hearts of many.  You are huge Franky and we love you. Can’t wait to see you again. This is not good-bye. My plan is to be wherever my brother is. So I will hook up with you there soon. Hopefully, there will be a hot tub for you to splash around in. I’ll try not to peek. : )  Big, big love to my brother. And to Ms. X, we congratulate and celebrate you too. Scott, you have some great and supportive friends. So loving, so loyal, so cool. But really, how could one not be drawn to you? Don’t worry-- I won’t do the pedestal thing. It is just that I love and care for you so much and for so many reasons. You have been an unequalled gift in my life, equally as long. You remain so, and always and forever, will be my most precious.   Thank you again, franky. And love you most and infinitely my brother.  Sheri  Give Gill, the Princess and Ted a hug for us.

8:28 AM, August 23, 2006
34DD said...
Wow! - it's hard to top that comment so I won't dare try. I'm just glad that Francis was able to write down his thoughts about the trip to see Mr. J - the stories have been spilling out all week. Thanks to S & S for taking such great care of my boy & your boy & to your mom who kept them well fed! Everyone needs a little comfort food now and then.   Mr Jonsey - I'm psyched that yesterday was an 8. I hope today is an 11. No more pain. Please tell Miss K we said HEEEEYYYYY and give her a squeeze for me (wink wink :) oxoxoxo lot's of love and good thoughts from NY.

ADDENDUM:

Sir Frank, thank you for this and many, many other acts of unconditional love

and Grace. Scott loved you so much- but you already know that.

Please know that we do too.

Hope this finds you well.

Forever & Always, you truly are my FAVORITE!

loves, Sheri

STAND UP TO CANCER!

2008-09-05T18:21:00.002-06:00

For the first time we can envision the possibility of stopping cancer in its tracks.

But just when science is on the verge of giving us the breakthroughs that can end cancer,
the will and the funding to do so are disappearing from the national agenda and from our collective consciousness.

Cancer takes one person every minute. One life in a moment.

They are our brothers, our sisters, our fathers and mothers, our husbands and wives,

Our best friends, our children, ourselves.

Every day in America 1500 people die and yet the means to save them are literally within our reach.

To wait any longer for someone else to save our lives and the lives of those we love is unforgivable.

Inspired to act by our own personal experiences with cancer,

We recognize that we can no longer rely on the current system alone to give us the breakthroughs we need.

So, we are calling on the public to help take matters into our own hands, investing in a revolution

That will change the way scientist and clinicians work to understand and treat these diseases.

Stand Up To Cancer is more than a rallying cry. It is a galvanizing force created to urgently move cancer research forward.

This is where the end of cancer begins: when we unite in one unstoppable movement and:

Stand Up To Cancer.

WE ARE STANDING!

(WSF) ABOUT PEACE, LOVE & UNDERSTANDING?

2008-09-04T22:30:00.002-06:00

Sage, wise words from the Master:

Elvis Costello.

Hey Brother, Scott!

I'm sending this out to you and your ska brothers.

Knowing if you were here, you would be fighting, protesting and pleading;

DOING everything in your power, to fight for peace and bring about change.

Love and Miss you, Monkey-Man

Slarry

P.S. I hope you, Dan and Nadine are taking care of one another.

Give yourselves *hugs* from me.

One Sister's Perspective

2008-07-28T21:51:00.005-06:00

Written initially, as a "comment" to Scott's post on September 11, 2006.

Re-posted today, almost two years later, as another member of our family,
Has recently been diagnosed with Cancer.
This comment feels as though I barely wrote it.

I miss my brother. I miss my Mom. We all do!

I am going to fight and support my brother In-Law, and his wife
(my sister)
With every resource available. Peace and love to both of you. sas

Others, too, that I'm close to-

Have lost their Mother, Brother, Sister, Father, Son or Daughter, or a dear Friend
In the months since Scott passed away.
Countless other's are dealing with their own illness, be it Cancer or some

other life threatening disease.
Please know, my heart, and love are being sent your way.

I will continue to fight against Cancer, whether I am donating my time, or money,
Or preparing a meal, or offering a shoulder to cry or lean on. Anything and Everything!
That is the least I can do.
It's the least we all should be doing.

Thanks to all of you who were, and remained, so supportive, kind and selfless

in your caring for Scott.
Thanks to my friends, also, who have been patient, loving, kind, gracious- long suffering
Who have also spread rays of sunshine, and kept my feet on the ground

and moving forward.

As I continue the journey of redefining my life, living my life, without the blessing
Of having my Brother and Mother physically near, I can hear and feel them

poking, coaxing and encouraging me. I cannot help but listen.

A special thought for Kerry and Stacey Swaner Moore; I am here, just down the road a bit,
if you need ANYTHING.
Cancer is so.... what? Intrusive, indiscriminate and penetrating.
It has no manners.
I will continue to fight; raging war against this senseless disease,

that seems to effect so many more with each new day.

My best to all of you,

Sheri

[comment post coming... technical difficulties and other duties requiring my attention] : )

The Continued Offering of Mr. Jones

2008-05-26T18:32:00.013-06:00

JULY 13, 2008

An Offering of Food: By Chef Scott

Mr. Jones (aka Scott Swaner)

Creating a culinary delight, featuring; Grilled Salmon, Fresh Spinach Salad with

bits of bacon, crushed blue cheese, walnuts and pears

and of course, Rice.

The feast was delicious, by the way.

photo taken in 2004, at Sheri and [Steph's]** house.

**ADDENDUM:
Steph is no longer a part of Mr. Jone's family.
04/20/09

Remembering Mr. Jones (Scott Swaner) photos

2008-05-20T08:21:00.008-06:00

Mr. Professor Jones, hanging in his office at The University of Washington.

Scott in Korea with a friend

"LIFE IS LIFE - Not to be Squandered" By Dave

2008-03-05T20:56:00.004-07:00

Thank you Dave, for this and many other things.

Scott Swaner
By Dave

January 7, 2007
I first met Scott in English class when we were freshmen at East High School. He was smart, really really smart.
The trick was that he was witty and outgoing and cool on top of being smart.
Scott wore black and white wingtipped shoes to school because "he" thought they were cool,
nevermind what anyone else thought. That was Scott– he decided what he wanted to do
and went after it will all his guts. The same could be said for his music, skating, schoolage, and girls.
Later, at University, Scott pointed out the best looking girl on campus (and she was at the time), and told me he would marry her (we had only met her a few hours earlier). Sure enough, six months later, Scott married her.

Scott saved my soul on more than one occasion. he showed me there is meaning in life–
the meaning is living itself. Scott made me watch “The Razor’s Edge” at least twice, until I got it.
Life is life– not to be squandered.
In this movie, two characters sit in a foxhole in WWI, lamenting the loss of their close friend,
who only moments before jumped on top of a grenade to save their lives.
In some odd ritual, they listed out the vices of their dead friend, and– through their tears–
tell each other that he will not be missed.

Scott lost a battle to cancer last month. He was 38.
He likely lived more in those 38 years than many many of us could even hope to do in an entire lifetime.
Scott was brash, smart, quick, and charming. he could cut quick with a comment,
but follow up with a trusting support that let others knew he would back them no matter what.
Scott was one of my oldest and closest friends.

He will be missed.

In Memory Of Nadine Swaner, our Mom

2008-01-13T09:39:00.002-07:00

ONE YEAR AGO TODAY
For our beloved Mother:

NADINE COX SWANER

September 13, 1927 ---- January 13, 2006

Saturday, January 13, 2007

Dear family, friends and loved ones,
Today, at 3:25 pm, our wonderful, beautiful Mother, Wife, Grandmother, Aunt and friend,
Nadine Cox Swaner, died at the Huntsman Cancer Institute,
surrounded by her family.

It was only one week ago that we were together with many of you,
as we grieved, honored and paid tribute to our brother, her son, Scott.
They were such dear and tender friends and so close.
Their bond and love for one another was deeper and stronger than anyone could imagine.
As tragic as the loss is that we feel today, we are grateful knowing they are not alone.
But together; able to enjoy, laugh and learn from each other, as they always have.
They are both now free from pain. This brings us some comfort.

The loss of our Mom, the loss of a Mother is especially difficult.
She has loved, protected and taught us so, so much.
She is unique in all the world. We count ourselves particularly lucky
and blessed to have been hers.

She is grand, eloquent, beautiful, selfless and long suffering.
She will be remembered most for her graciousness, generosity,
unconditional and boundless love and strength. She lived a determined and purposeful life.
She is the strongest woman we know. Her faith and love for her Heavenly Father is unparalleled.

A gentle woman, with a twinkle in her eyes and a smile that could light up every room
and brighten any heart. She brightened all of ours.

We love you Mom! Infinitely and Eternally.
We will always miss you more than you will ever know.
Our hearts are broken and we are so, so sad.
No one, and nothing prepares one adequately for the loss, the death of your Mother.
We promise that we will love and cling to one another, forever and always
and think of you every minute of every day
and be grateful for every stolen moment and memory we shared with you.

Loves,

Sue, Sheri, Stacey ( and Scott )

We know that for many of you, our Mom’s death comes as a shock.
Many of you were not aware that she was ill.
Please feel free to contact us and we will help as best we can.

Sue Swaner: albeez_90@hotmail.com
Sheri Swaner: sschapin50@gmail.com
Stacey Swaner Moore: pancreasboy@comcast.net

A Mother's Love
~
A mother's love determines how  we love ourselves and others. 
There is no sky we'll ever see 
Not lit by that first love.
Stripped of love, the universe
 Would drive us mad with pain; 
But we are born into a world 
That greets our cries with joy.
How much I owe you for the kiss 
That told me who I was.
 The greatest gift--a love of life-- Lay laughing in your eyes.

Because of you my world still has 
The soft grace of your smile; 
And every wind of fortune bears 
The scent of your caress.

Nicholas Gordon

BRIEF INDECISION revisited: July 22, 2006

2007-12-23T21:24:00.000-07:00

This post is a reprise from the original from this same blog.

As the one year Anniversary of Scott's death came and went, December 20, 2007, a mere
two days ago, it prompted me to re-read some of his blog.
It brought back many memories, reflections, and the utter horror of this entire situation;
Scott's diagnosis, and his eventual death from pancreatic cancer.

There was so much, in the "in between."
The same could be said for "The Aftermath," the time, spaces, places, feelings, people, confusion
between the here and now.

One of Scott's dearest friends, a frequent and eloquent blogger, and a dear, dear friend
to many of us, lost her Mother to cancer, shortly after Scott died. A "double whammy" to be sure.
My family, Scott's family, lost our Mother a mere three weeks after Scott died.
These episodes and events, give one pause.
Cancer--- I'm sick of it. Death, I'm so tired of it interrupting so many peoples lives.
And yet, it is a part of life.

It is almost Christmas Day, a Holiday, a day of worship, joy, reflection, a traditional time of "family,"
for many people.
Whatever your belief system is, whatever you do on this particular day,
at the very least it is filled with feelings and memories-- both of families and friends.
A day of love and connection.

This day, is forever changed and altered.
I wish DZD comfort and peace. I wish franky, the same.
There are too many people to mention, and, this really isn't my blog or forum-
it's my brothers.
But I do wish you all, peace and comfort and joy.
And if Scott were here today, I know he would want to thank all of you
for loving and caring for him so completely, supporting him,
with such gracious selflessness. Me too.

I wish any and all who are struggling, suffering or filled with a sense of loss
or emptiness, any who are fighting for their lives, just as dear Scott did, not so long ago,
the determination to continue to fight and rage. Life is worth it.

There are better times ahead. And even when it doesn't feel like it,
you are not alone, we are not alone--
we have each other to lean on, when we allow it.

My best to all of you,

Sheri

PS I love and miss you Spot.

revisiting Scott's blog.
His post and the comments made, on July 22, 2006.

Do Not Go Gentle — Poetry & Cancer, Life & Death
Some thoughts about pancreatic cancer, pancreatica, metastatic cancer, dying young, untimely death, quality of life, then poetry or "a making, a creation" — & what can be left of it while coping with fear and grief and dumb fate; trying to make a life, with what seems like little left. Family & friends, love & loss. Comments are welcomed and encouraged, though word verification and moderation are required.
Saturday, July 22, 2006
7.22.06, Brief Indecision
Walked into the kitchen, which is still shaded out because of yesterday's heat — and what they say will come today as well, and took a left turn, walked about ten feet to the far wall where I stood facing the sink, coffee maker, coffee grinder, rice maker, dish rack. For a brief moment I thought about what Frank asked me once, or I thought rather the object of his question, at what point when you get up every morning do you think "Ah, fucking cancer"? Today I woke up and it was already woven into my thoughts from the left turn, the ten feet, the facing of the morning machines.

Cancer, cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking family shit in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . . kneel and move your lips as if you believe. . .", the exact same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.

This is how the terminal psychology seems to work, if I am in any way representative: News from the restaging wasn't really news in the sense it was information I was waiting for but already knew, information I knew would be coming at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last restaging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."

The pychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The infinite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simlpy taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the restaging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake when head cracks against the exam room white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts of piss about 8 weeks of rest or healing, it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. One message. Your winnings are about gone. Second message.

Posted by Mr. Jones at 1:56 PM

3 COMMENTS:

lefty said...
FUUUUUUUUUUUUCK!!!!!!!!!!!!!!!!!!!!!!!!!!.....
there, i said it. did it work? did i shout it loud enough? spot, i'm so sorry i haven't commented in forever. i do try and catch up and read everything a few times a week. stolen moments at work, you know.
i go through every day with thoughts of you, the cancer, the past, the future, history with you, history despite you and then WHAM.......the daydreaming and nightdreaming with thoughts of you front and center or blended with something else going on, end. i am jolted back to the present, your present. this can't be happening to you....i remember there is not a damn thing i can do.
i can't remember not knowing you. i don't think you know how important you are to me. all of these random thoughts are driving me mad. i'm trying to keep my girlfriend upright and focused while i'm so pissed off and sad. this long distance really sucks right now. if i could only go pick up some pho (thanks for that spot) and come over tonight. well, i could come and get you and bring you back here with the central air and we could watch home for the holidays and the ref and laugh so hard at all of the familiar, or familial, moments until rice noodles choke us. my thoughts are so crazy jumbled after that post spot. i love you so much. i think i am encroaching on a larry length post : )
just put your chucks on and come over. i miss you and i think laughter is the only decent medicine there is. you know, you are going to miss mormon, i mean pioneer day here in this fair state (not the state fair-that’s something else). a free day off work to eat your favorite...swine. hot dogs for you who are unfamiliar with the crazy customs of this crazy state. it’s bigger than the 4th and we are home to the 3rd? largest parade in the united states. the people camping out are a sight to be seen.
all of the jones’ family will be gathering at tossing salad’s for steak and farmer’s market vegies and fruit and maybe some swine. we will all be thinking, talking and laughing about you. there will be some massive fireworks and then the grind starts again. there will be no effing (sp?) mr. jones senior though. he’s not ready to witness his offsping having fun, i mean, his offspring living “immorally”. save that for another day.
you are in my every gesture and thought.
your eloquent posts are incredible but today knocked me on my ass. larry had to walk away.
xoxo, lefty
7:15 PM, July 22, 2006

tossing salads said...
scott, just had a nice conversation with julias brother who lives across the street from me. im sitting her with tears in my eyes. i love you and i fucking dont want this happening to you. your restaging wasnt the best news but it wasnt the worst news. i have been blessed to be your sister. i can only thank you for the opportunity to have helped name you, change your diaper, watch you hit home runs, be so fucking smart that it was scary. i knew i would never be able to keep up. what a gift you are. thank you for showing me a different way of thinking, of being. i cant even imagine what knowing what you are facing means. i would like to know that i could be so brave, so thoughtful, so giving. i dont think so much is fair. we so need people like you. to make this world a better place. you have never thought of yourself as better just because of your intelliegence. you have just accepted that some can teach, give you knowledge, just accepting. from one of the most intelligent people on the face of the planet. fuck!!!! please keep fighting, all the way. this doesnt deserve you. we deserve you. i love you. i so want to be as brave as you. my thoughts are always with you. thank you.
8:03 PM, July 22, 2006

Anonymous said...

Mr. Scott Jones
this might come across cold, but it is not meant to be. what you posted today, although i wish your illness never happened, i almost feel relieved to hear you confront it. i think it's good that you are so up front and honest about your feelings. what a privilege it is to be able to share that with you through your blogs. there's a lot of intimacy with all of your posts, but the nature of this one seems especially so. thank you. thank you for keeping everyone in the light when it comes to how you are actually handling all of this. you could've just as easily shut everyone out. i think you're right. although i wish with all my heart that things were different, i'm thankful to hear that you're trying to go through one day at a time (whether it'd be making a cup of coffee or something else), you're still getting up to do so - you're still fighting for every bit of "normal"; even though your post reads a little like a part of you is letting go, facing the horrid truth of the matter - i think it's all strength. i know you're just being truthful...but don't forget, "let the chips fall where they may" can still buy a lot of time if you fight for it. please keep fighting -
10:27 PM, July 22, 2006

Professor Scott

2007-12-11T08:33:00.000-07:00

Some photos of Mr. Jones,
his family and friends.

We miss and love you, Mr. Monkey Man !!

A very kind note from Scott's oncologist.

Dear Scott's Family and Friends,

I am thinking of Scott today, as a year from his passing races up so quickly.
My thoughts are warm and positive about Scott. I remember him very fondly.
I of course feel regrets and frustrations about the horrible thing that cancer is,
and I wish that I could have done better for Scott. I hope you all are holding up ok.
And that you are living fully and with joy, as Scott would want, and as life demands.

My very best to you. My very best to Scott.

Sincerely
Sam Whiting MD

Dear Dr. Whiting,

Thank you for contacting us.
What an unexpected pleasure. We remain, as ever,
so grateful for the loving care you provided Scott.
He felt safe and confident with you and your vast skills-
and for that, and all that you did for him
we are forever grateful.

Our best to you and your family.

BITS OF GRACE & GRATITUDE

2007-12-01T20:01:00.001-07:00

More and more, I am discovering that I am not the only one

whose life Scott touched.

Thank you, for your kind letters, emails, and for "checking in,"

especially this first Holiday Season of loss.

It means so, so much.

Please feel free to write, comment- whatever.

Somehow, I think your voice and words will find their way

to him.

With love,

Sheri and family

sschapin50@gmail.com

<

posted by: slarry

a guest and sibling of mr. jones

THE AFTERMATH Holidays without Scott and Mom

2007-11-18T19:27:00.000-07:00

AUTUMN, 2007

Saturday, November 10th 2007

I still can’t imagine my life without my brother and Mom being an
every day part of it. I know it is real, as real as it has been,
for the last eleven months. The knot in the pitt of
my stomach is a constant reminder.

It has been almost a year since Scott passed away.
I guess for the most part, I am doing ok; functioning, getting up in the morning
going about, and doing, what appears to be my life.
Yet, there are times when the "two-by-four" feeling and thud, strikes
me with a blow and force, that knocks me down on my
emotional ass. I stay there for a while and think and wonder...
The shock and emptiness of it all. The harsh, tragic realities that happen,
in this thing we call life.

As much as I sit here, stagnating, thinking and wondering,
I already know what they want me to do.
Stand up, shake myself off,
and get on with things; my life. LIVING.
That is what Scott asked of and wished for me,
mere hours before he died.
Not distracting myself from the pain and emptiness I feel-
but how to live and carry on inspite of it.

Scott believed that distraction is an activity that averts
our eyes from seeing what is really happening, all that is REAL.
Yes, I am a grieving sister and daughter, yes, the loss of my brother and mom
will follow me wherever I go.
I won’t distract myself from the pain that surrounds me.
I will follow their lead-
and LIVE.
Enjoy and be grateful, for all that I have.
The family and friends I have been
so richly blessed with.
Grateful for those who love and care for my brother and Mom.

Be grateful for even the mundane.
They were.

loves and hugs.
I, we, all miss you so very much.

love,

Slarry

WHAT CANCER CANNOT DO / a guest of M. Jones

2007-10-20T20:22:00.001-06:00

Several people have asked if I know where they can find the quote:
"WHAT CANCER CANNOT DO."

Here it is. I have a Tee shirt with this quote on it,
though I must admit- "CANCER SUCKS !" remains my favorite.

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot erode faith
It cannot eat away peace
It cannot destroy confidence
It cannot kill friendship
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit....

--anon.

Hope this helped.
Yes, cancer is painful, horrid, senseless, tragic and
sometimes, terminal.
As dzd said in her guest blog a year ago ( ? )
be grateful for the mundane, the every day things of life.
They are precious, and often overlooked, as "gifts."

Though Pancreatic Cancer killed Scott physically, he lives on
in the hearts of all of those who know and love him.
He lives on through his words, his beautiful mind
and through all of those he inspired.

I miss my brother....

Sheri

TINFISH PRESS: "Someday I'll Be Sitting in A Dingy Bar"

2007-10-02T20:31:00.000-06:00

"Someday I'll Be Sitting in a Dingy Bar"

Tuesday, Aug 21, 2007
a collection of poems, by Hwang Jiwoo.

Hwang Jiwoo: Author & Poet of:
"Someday I'll Be Sitting in a Dingy Bar"
with Professor Scott H Swaner, one of the co-translators.

This beautiful, yet often hauntingly dark collection of Korean poems
can be purchased at: www.tinfishpress.com.

As Scott's family, and our recently getting to know the great and talented people of TinFish Press, we have grown to admire and value our new kinship with them. More, to appreciate and respect their vision, and the passion and dedication they put into each of their creations.
They are a generous and creative bunch of people, who seem to work endlessly.
They are enthusiastict with each individual book they print, each cover they create. Creating opportunities for new writers, who might otherwise not get heard.

"The Dingy Bar Book" became available for purchase a little over six months, after Scott passed away from Pancreatic Cancer.
Being a part of the translation process, making "The Dingy Bar Book" available for english readerhip, along with co-translator, Young-Jun Lee, was one of Scott's most treasured gifts.

He felt honored to be a part of its creation and to work with and learn from such a gifted poet; the eloquent & brillant Hwang jiwoo.
As one of Scott's sisters, I view "The Dingy Bar Book" as part of Scott's legacy and definition.
His love, appreciation and passion for all things Korean--
most especially, its people and their voices.

---sas

www.tinfishpress.com

Our thanks, to Susan M Schultz, editor, creator and publisher of TinFish Press.

Scott H Swaner

2007-10-02T18:36:00.000-06:00

Scott H. Swaner

Dr. Scott H Swaner 1968 ~ 2006.
To our friends and loved ones; Our son, brother, uncle, friend, colleague and loved one, Scott Swaner, died December 20th 2006 in Seattle, Washington of Pancreatic Cancer. He was 38 years old. At the time of his death, Scott was an Assistant Professor of Korean Literature and Poetry at the University of Washington in Seattle. After successfully completing an LDS mission (the church of his youth) in Seoul, Korea, Scott's ongoing love affair with all things Korean began. Quoting his mentor and dear friend, Dr. David McCann of Harvard University, "Scott was the first student ever admitted in the Ph.D. program to study Korean Literature at Harvard University. He was a wonderful student, passionate about literature, the serious study and performance of it, and above all else, its relationship to the lives of the Korean people who made and read it. Scott's essay for Harvard's Library and exhibit of works remains an inspiration and tool for Professors and students alike." Scott was born in Northridge, California January 6th, 1968. He grew up in Castro Valley, California until the family moved to Salt Lake City in 1978. Scott graduated from East High School, where he formed many lifelong friendships. Friends who we as a family honor and remember today. Even in high school, Scott was a devoted writer and lover of learning. It was at East High where Scott also developed his love for music, Vespas, soccer and Southern Utah.
Scott earned his B.A. in English Literature from the University of Utah and his M.A. in Korean Literature from Cornell University in Ithaca, New York. Scott was also a a recipient of a Daesan Foundation Grant for translating Korean Poetry and was also awarded a Fulbright Scholarship. Scott earned his Ph.D. in Modern Korean Literature from Harvard University. Upon graduation, Scott was awarded the position of Assistant Professor of Korean at the University of Washington where he taught for three years.

Scott was first and foremost a teacher and a writer, a lover of words with a gift for translating poetry, teaching and deeply understanding critical theories and had a great passion for philosophy. He had a huge impact on his students and left an indelible mark with his teaching, poetry, essays and thoughts.
We were stunned and grief stricken at his diagnosis of Pancreatic Cancer in March, nine months ago. Scott began a website www.donotgogentle.blogspot.com upon learning of his diagnosis.
In it, he continued to teach and educate others about his experience with the knowledge of a foreshortened life, his symptoms and cutting edge treatments of Pancreatic Cancer.
Our family wishes to thank Dr. Sam Whiting and his staff of the SCCA for their consistent, empathetic and supportive care of Scott throughout his illness. We are forever indebted to Dr. Whiting for the lengths he took in helping prolong Scott's life, allowing him to linger here with us just a little longer.
Pancreatic Cancer is intrusive, invasive, senseless, insipid and in Scott's case, terminal. It robbed us of Scott and has left a huge void in the lives of those he leaves behind and all those who love him. Scott left this world much the same way he entered it; with light and life. He fought and raged against cancer with immense courage and bravery. His strength of mind continually amazed us. He did not "go gentle into that good night" (Dylan Thomas) even until his last hours. With his beautiful mind intact and even more expansive heart, he died surrounded by love.
"NOT ONLY IS ANOTHER WORLD POSSIBLE, HE IS ON HIS WAY. ON A QUIET DAY, ONE CAN STILL HEAR HIS BREATHING." Arundhati Roy

Yes, there is another world, another life and we will always be able to hear his breathing.
We love you Scott. You did more in your 38 years than most do in a lifetime. We are and will forever be grateful to have been blessed with the gift you are and have been in our lives. Love you Infinite Numbers, your family.
Scott is survived by his parents, Dr. Harold and Nadine Swaner, sisters; Sue Swaner (Susan Passino), Sheri Swaner (Stepheni Hutton), Stacey Swaner Moore (Kerry), nephews and nieces, Mike Luna (Whitney), Deborah Luna Swensen (Garth), Matthew Luna, Whitney Moore, Dayne Moore and great nieces Alexandria Swensen and Jasmine Luna, and his constant companions and source of peace, his cats.
Preceded in death by his friend and nephew, Daniel Luna, who passed away almost two years ago suddenly and tragically. The loss of Dan affected Scott and we all continue to morn the loss of him.
This is not goodbye, dear Scott. You will never lose your magic . . . and we promise to take care of our beloved mother.
Special friends: Kim Luu, Gillian Harkins, Frank Chiarella, Ted Mack, Daisy Dailey Scholz and Samuel Straight. Special thanks to Kim, Gillian and Ted, Scott's Seattle family, for your constant love, care and support for Scott.

There will be a memorial service held Saturday, January 6th, at noon at Larkin Mortuary, 260 East South Temple. All friends and family are invited to attend.
There will be another memorial service on Jan. 19th in Seattle, WA. Please consult Scott's family or web site for updated info.
Published in the Salt Lake Tribune on 1/4/2007.
Guest Book • Flowers • Charities

posted:
Tuesday, October 2, 2007
by: Slarry, aka; Sheri Swaner, one of Scott’s sisters
31

Mr. Jones Obituary

2007-09-26T21:42:00.000-06:00

SCOTT H SWANER

01/06/1968 - 12/20/2006

Scott H. Swaner

Dr. Scott H Swaner 1968 ~ 2006

To our friends and loved ones;

Our son, brother, uncle, friend, colleague and loved one, Scott Swaner, died December 20, 2006 in Seattle, Washington of Pancreatic Cancer. He was 38 years old. At the time of his death, Scott was an Assistant Professor of Korean Literature and Poetry at the University of Washington in Seattle. After successfully completing an LDS mission (the church of his youth) in Seoul, Korea, Scott's ongoing love affair with all things Korean began. Quoting his mentor and dear friend,
Dr. David McCann of Harvard University, "Scott was the first student ever admitted in the Ph.D. program to study Korean Literature at Harvard University. He was a wonderful student, passionate about literature, the serious study and performance of it, and above all else, its relationship to the lives of the Korean people who made and read it. Scott's essay for Harvard's Library and exhibit of works remains an inspiration and tool for Professors and students alike."

Scott was born in Northridge, California January 6, 1968.
He grew up in Castro Valley, California until the family moved to
Salt Lake City in 1978. Scott graduated from East High School,
where he formed many lifelong friendships. Friends who we as a family honor and remember today. Even in high school, Scott was a devoted writer and lover of learning. It was at East High where Scott also developed his love for music, Vespas, soccer and Southern Utah.
Scott earned his B.A. in English Literature from the University of Utah and his M.A. in Korean Literature from Cornell University
in Ithaca, New York. It was there that he was
awarded a Fulbright Scholarship and he earned
his Ph.D. in Modern Korean Literature from Harvard University.
Scott was a recipient of a Daesan Foundation Grant for translating
Korean poetry at Harvard University. He was then awarded the position of Assistant Professor of Korean Literature and Poetry at the University of Washington, Seattle.

Scott was first and foremost, a teacher and a writer, a lover of words with a gift for translating poetry, teaching, and deeply understanding critical theories. He also had great passion for philosophy, politics and the poetic process. He had a great impact on his students and left an indelible mark with his teaching, poetry, essays and thoughts.

We were stunned and grief stricken at his diagnosis of Pancreatic Cancer in March, nine months ago. ( 2006 )
Scott began a website, www.donotgogentle.blogspot.com
upon learning of his diagnosis. In it, he continued to teach and educate others about his experience with the knowledge of a foreshortened life, his symptoms and cutting edge treatments of Pancreatic Cancer.
Our family wishes to thank Dr. Sam Whiting and his staff of the SCCA , Seattle, for their consistent, empathetic and supportive care throughout Scott’s illness. We are forever indebted to Dr. Sam Whiting for the lengths he took in helping prolong Scott's life, allowing him to linger here with us just a little longer.
Pancreatic Cancer is intrusive, invasive, senseless, insipid
and in Scott's case, terminal. It robbed us of Scott and has left a huge void in the lives of those he leaves behind and all those who love him.

Scott left this world much the same way he entered it, with light and life. He fought and raged against cancer with immense courage and bravery. His strength of mind continually amazed us. He did not
"go gentle into that good night" (Dylan Thomas)
even until his last hours. With his beautiful mind intact and even more expansive heart, he died surrounded by love.

"NOT ONLY IS ANOTHER WORLD POSSIBLE,
HE IS ON HIS WAY.
ON A QUIET DAY, ONE CAN STILL HEAR HIS BREATHING."

Arundhati Roy

Yes, there is another world, another life and we will always be able to hear his breathing.
We love you Scott. You did more in your 38 years than most do in a lifetime. We are and will forever be grateful to have been blessed with the gift you are and have been in our lives.
We Love you Infinite Numbers, your family.

Scott is survived by his parents, Dr. Harold and Nadine Swaner, sisters; Sue Swaner (Susan Passino), Sheri Swaner (Stepheni Hutton), Stacey Swaner Moore (Kerry), nephews and nieces, Mike Luna (Whitney), Deborah Luna Swensen (Garth), Matthew Luna, Whitney Moore, Dayne Moore and great nieces Alexandria Swensen and Jasmine Luna, and his constant companions and source of peace, his cats. Preceded in death by his friend and nephew, Daniel Luna, who passed away almost two years ago suddenly and tragically.
The loss of Dan haunted Scott, and we all continue to morn the loss of Dan.

This is not goodbye, dear Scott. You will never lose your magic . . . and we promise to take care of our beloved Mother.
Special friends: Kim Luu, Gillian Harkins, Frank Chiarella, Ted Mack, Daisy Dailey Scholz and Samuel Straight.
Special thanks to Kim, Gillian and Ted, Scott's Seattle family, for your constant love, care and support.

There will be a memorial service held Saturday, January 6th, 2007 at noon at Larkin Mortuary, 260 East South Temple, Salt Lake City, UT.
What would have been Scott’s 39th Birthday.
All friends and family are invited to attend.
There will be second memorial service on January 19th in Seattle, WA. Please consult Scott's family or web site for updated info.
Published in the Salt Lake Tribune on 1/4/2007.
Guest Book • Flowers • Charities

Thank you--
Mr. j

http://www.legacy.com/saltlaketribune/Obituaries.asp?Page=Lifestory&PersonId=85805480

Memorial Services

2007-01-02T20:35:00.000-07:00

Memorial services for Scott will be held:

SALT LAKE CITY, UT
Saturday, January 6th @ noon
Larkin Mortuary, 260 East South Temple

Please contact Sheri Swaner for further details.

SEATTLE, WA
Friday, January 19th @ 3-5 pm
University of Washington Campus
Smith Room in Suzzallo Library

Please refer to his department website, Asian Languages and Literature, UW
or contact Gillian Harkins for further details.

All friends and family are invited to attend both ceremonies.

2006-12-27T22:40:00.001-07:00

27 December 2006

Dear Blog:

I apologize that once again, it is me writing and not Scott himself. It’s been a long time since the last post, and much has happened. It is hard to write on behalf of Scott but unfortunately this duty is left to those of us who stay behind.

It is with stumbling fingers and a heavy heart that I report: Scott passed away on Wednesday morning, December 20 in our home in Seattle. He fought against pancreatic cancer for nine months, with the love and support of his friends and family. He was an amazing man, committed, thoughtful, self-reflective, intense and complex.

It’s beyond me to write anything even resembling an obituary, and I hope that you’ll forgive that this post took some time in coming. I don’t know that anyone was prepared to lose him so soon.

Those of us who loved him will miss him terribly, and in time will sort out the next steps.

Services are being planned by friends and family in Salt Lake City and also in Seattle. We’ll try to post the information as it becomes available, but with this entry I’d like to close the blog. I’d like to thank everyone, this community, grown out of love and concern for Scott for being with us on his last journey.

Sincerely

Kim Luu (xyla78@gmail.com)
Gillian Harkins (gharkins@u.washington.edu)
Sheri Swaner (sschapin50@gmail.com

Scott H. Swaner
06 Jan 1968 – 20 Dec 2006

12.06.06, From Zion, Condition, Updates

2006-12-06T16:26:00.000-07:00

[I just sit back here and watch what is happening on this post, this post to cover my ass for all the days I've missed, the days of distraction, trying to cover for pain and other things. Thanks to Kim is all.
]

"Travelogue and Updates"

Tuesday, 28 November 2006

I asked Scott if I could do this blog as an opportunity to share some thoughts. Some of this is indeed a travelogue, on our recent trip to Salt Lake City.
Some thoughts on my past two months in Seattle and learning what it means to live with cancer. Finally, an update on the situation, Scott’s condition, that sits so heavily on everyone’s mind and heart. Perhaps this will be more than some of you are prepared for, and surely not the news you’d prefer to hear, but here I go . . .

There are moments in everyone’s life that for one reason or another stay cemented forever as one of Life’s Defining Moments. Watching a son say goodbye to his mother, both people thinking that perhaps it will be the last time. If it were simply that, it’d be sad but not very unique of a situation. But, the mother is in the Intensive Care Unit at the hospital and the son is visiting her from out of town. The son is 8 months into a fight with Stage IV pancreatic cancer, a disease with a mere 20% survival at one year. It’s a race, for life or death as the case may be – will the elderly mother outlive her son in his fight with cancer, become one of the 80% who do not make it, within the next four months time? Or, will the son beat the odds only to watch his mother succumb to old-age disease, tired body parts and systems slowly failing in an escalating cascade? And what of the family? Trapped in the middle, watching old and young alike struggling as disaster and tragedy lurk around every corner. This is of course all happening to a family that has already experienced another tragedy, another senseless death barely a year ago.

Unfortunately, this does sum up a big part of what I took away from the trip we made to Salt Lake City for Thanksgiving, to visit the Swaner Clan. The trip coincided with his mom being in the hospital due to a yet undiagnosed cardiopulmonary disorder. So, a tough way to spend the holiday, between trying to manage the holiday frenzy and juggling hospital visits to see Scott’s mom, as well as Scott’s own ever increasing issues with cancer.

I hadn’t met most of the family before, and didn’t quite know what to expect even as I had gotten the basic who’s who from Scott. Many interesting observations on human psychology and coping mechanisms, family dynamics and relational roles. I’ll just leave that one there =) Everyone I met was very nice, and I was touched with how involved everyone seemed to be in all the sickness, and helping out wherever they could. I still remember how draining the daily trips to the hospital can be, coupled with the feeling of helplessness and the constant waiting for news, any news from any doctor that might bring the situation closer to resolution. Big thanks to everyone for your graciousness and hospitality.

Shifting gears now to Scott, and how he’s been doing. I’m sure you’ve all sensed from the diminished frequency of blogs that things have been getting tougher as more time passes. If you’ve communicated with him recently indeed his thoughts are darker as the quality of his days increasingly fluctuates towards bad. It’s hard to deny that the clock is ticking louder, if not also faster. Idealistically, every day starts with the hope of being better than the last, but too often these days precisely the opposite seems to happen. It’s rough to start a new day when the night just kicked your ass. The cancer seems to be actively spreading, day by day despite the rage and fight against. It moves faster than we do, faster than we seem capable of adjusting and adapting to. There is no such thing as “managing” the disease, only a weak attempt at not getting steamrolled by it. It seems to manage Scott, dictates what he can and cannot do, what he can or cannot enjoy even. I can launch a complaint, scream that it’s not fair, but what’s the use?

The synopsis is that things have been pretty rough. He spends a lot of time just trying to get the pain under control, which becomes a physically draining task. Most days, he has a tough time even getting started in the morning as his mind seems foggy and slow. The days start with a big dose of pain meds, at whatever hour between 5 and 7 am that the pain becomes unbearable, then lie back down and wait for the meds to kick in and try to catch up on some sleep that didn’t happen the night before. Late morning, try to wake up for real and start some semblance of a day which might include some phone calls, some email, or mostly lying down or sitting still and reading if he still doesn’t feel too great. Try to push down some food in order to take some meds, drink some glycojuice. By the time I get home from work between 5 and 6, often the pain has returned in some (usually pretty serious) capacity. All this to mean, all but a couple hours of each day are pretty much stolen from him, from us, by this loathsome disease. Thus, the challenge becomes: can we make the best of that brief time each day. I won’t deny that it can be overwhelming.

Additionally, Scott’s been experiencing shortness of breath for the past several weeks. Initially, this was attributed to his diminished red cell counts (anemia), as was his general lack of energy and tiredness. These are all very common chemo side effects, and thus not of particular concern. He’s already on a biweekly drug (Darbo) to help manage the anemia. His breathing got acutely worse on the Saturday night/Sunday morning after Thanksgiving while we were in Salt Lake. Bad enough that we paged the doctor on-call in Seattle, to ask what we should do. She actually suggested a range of possibilities, from anxiety and stress on the mild end, to a pulmonary embolism on the severe end as explanations for this sudden change. Her recommendation was to get a chest scan as soon as possible.

Monday morning, back in Seattle we went straight from the airport to the Cancer Care Alliance for what should have been a regularly scheduled chemo appointment. We relayed to the nurse what had happened over the weekend, and she arranged for the CT scan that the on-call doctor had recommended. A quick check of his blood oxygen level put him at 92%, which was not a very good sign as normally it should be closer 97%. Five brutally long hours later, the CT scan showed a pulmonary embolism. Scott was told that the decision to go ahead and do chemo that day anyhow or postpone was his. After all that had happened with not getting any sleep for two nights, waking up early to catch a flight, then all the waiting around at the hospital, he could barely put together a coherent sentence. I tried to get him to eat some soup, and he kept falling asleep with the spoon mid-way to his mouth. Not getting chemo was probably a good idea.

On the pulmonary embolism – it’s essentially a blockage of an artery in the lungs by fat, air, clumped tumor cells, or a blood clot. They’re not sure what caused it, but apparently cancer patients are at an increased risk for developing them due to changes in the clotting mechanism of the body and/or as the tumor spreads. There really isn’t any quick treatment to get rid of the clot, but they gave him an inject-able blood thinner called Lovenox to help dissolve the clot so that his body can slowly resorb it over the next several months. This means he won’t get better very quickly but he shouldn’t get any worse either. They arranged to get oxygen delivered to the apartment that afternoon, to be used ‘as needed’ and so home we went.

I must say that this particular piece of news was difficult to digest. On the one hand, it’s pretty bad news. But it’s uncertain how bad it is, or if something else will come along and be even worse? For now, it’s manageable with the oxygen at home and it’s slowly being treated with the anti-coagulant (blood thinner). In terms of quality of life, it does make it harder but it still doesn’t beat out the pain as the biggest detriment to this factor. It just means this wretched disease is only getting stronger as it takes more away from him . . .

Thursday, 30 November 2006

Fucking cancer. I can’t keep up. In the day and a half since I had started this post, things have changed yet again. It’s progressed, or at least we’re more aware of the progress now than we were two days ago. To be frank, it’s moving fast . . .

I don’t have the complete details as I wasn’t present for today’s appointment, another restaging, but I will relay the details best I can. There has been a significant change in the CA19-9 cancer marker number. This is the number that started approx 12,000 when Scott was first diagnosed. At it’s best, we saw a drop to the 5,000 range after the first several rounds of chemo in May/early June. However, by the second restaging mid-July when we learned that the chemo was losing it’s effectiveness the number started to slowly but steadily rise again . . . 8,000; 9,000; 12,000. We’ve been trying to play catch up ever since. The most recent numbers have seen a much more accelerated increase. I saw a number from November 13th at right under 30,000. Today, we learned that his most recent test (Nov 27th) came back at 41,000.

An update on the pulmonary embolus, which turns out to be emboli. Two of them, one on each lung. Luckily, neither of which are too close to the heart (fear of it breaking off and causing a heart attack). Tumors, and sizes thereof, were not really discussed today as this restaging didn’t involve a pre-restage CT scan.

A significant portion of today’s discussion with Dr. Whiting centered on management of the pain that has been ever increasing, and overall quality of life issues. And yes, end of life issues. The decision to continue with chemo or not was posed, as it’s become evident that there are diminishing returns to balance with the side effects of chemo that have been intermittently manageable, or somewhat heinous as was the case with the acneiform rash from Tarceva.

Some new meds for pain management were prescribed: a fentanyl patch, Dilaudid, and another one that I can’t recall the name of. The thought was that Scott has been seriously under-medicated for pain for a while now, and the hope is to try to get it under control. We keep getting told that he shouldn’t be suffering as much as he is, and maybe this will be a positive change. Although, it is scary that they’re bringing out the big guns on this one, so to speak. As a drug, fentanyl has an analgesic potency of about 80 times that of morphine. The patch is meant to offer a slow but steady dose of this compound continuously. Dilaudid (aka hydromorphone) is one of the most potent narcotics they can prescribe. He’ll give these new drugs a whirl as soon as the prescriptions actually get filled.

I lack Scott’s eloquence and grace with prose, and thus apologize if my delivery is too blunt or harsh. Scott and I have had a few conversations on what to tell people, the friends and family that are concerned for him and anxiously await any updates, any news at all. As difficult as the news is to hear, it has been exponentially harder to deliver and I wanted to help him out on this one. I hope this allows everyone some time to think about and reflect on the situation, what has been happening and what might be happening sooner than we’d all like. Difficult times lie ahead, and your continued support and encouragement do not go unnoticed nor gratefully received.

11.21.06, The Lost Comment

2006-11-21T16:57:00.000-07:00

Franky Scale, held in suspension between 5 and 6, which feels like an improvement after the past many days. The acne/rash I've been dealing with seems to have subsided some in the past few days, but my face does still very much look a piece of modern art, a Pollock. Filled with physical traces of confusion and pressure and possibly some meaning if you stare hard enough.

One result of this is that I now look sick, visibly. This is relatively new. I looked thinner before but "great" according to most family and friends based on what they had expected after not seeing me for some time and knowing that inside me, at least, something is eating my body away. Now with this ocular proof I expect you'd be a little shaken up. This is to be expected.

Now, a lost comment. I approved a comment today, posted on the 19th by "anonymous" and it's quite enigmatic to me. It says something about "for someone who has spent a lot of time thinking about Pascals' wager, it's funny you don't apply the same thinking to your disposable income." Would Anonymous care to shed light on this for me? It's just odd, I'm still trying to piece it together. Did I post somethind financial? Was I musing on money recently? Hm. Now, too, I can't see what post of mine this was attached to. Have to search for it. Or if anyone else finds it, let me know.

OK, I found it, it's connected to the "5.23" post. I read it again. Is it a castigation? Just a prodding to think more carefully? Curious. Curious.

11.17.06 Friday Slide

2006-11-17T17:18:00.000-07:00

Today's the last of a long week for me. Nothing eventful to be marked, save its end, no great ordeals or traumas, no riveting stories — unless you're overly interested in bodily functions and myriad fluids, let's leave that one there — just another name for another bit of time to say a little more has past. Everything seems to continue, and thought the next restaging is a few weeks away, it seems the cancer is moving right along with the time and the gradual diminution of days. Meds keep going, supplements, as well, calls now and then, emails — though I'm slacking there a bit — energy, and the various complications that are what they are and don't need mentioning today.

I do still appreciate the emails, comments, etc. From yesterday, 34DD, thanks and good to hear from you again; TS, I feel all your concern and the love you send and my thoughts are with you though my voice is often disconnectd; Slarry, I always appreciate your willingness to help out and know how genuine it is. Mom is out there somewhere, too, hopefully doing well: if someone could fill me in on today's check up I'd appreciate that. And from a couple of days ago: Jen, I am so sorry we couldn't meet up before your departure. But I hope you're in a better place and things conintue to improve. My thoughts are with you, both of you. Take good care.

My super came up to check out some apartment repairs today. I wasn't in the best form I guess so he asks whether I'm all right, says I look like I might have the flu or something. I thought I had mentioned my "condition" once some time ago, in order to expedite any FedExes that come for me since they're often meds I need, but apparently I hadn't. So for some reason I decided just to tell him, especially as he lives on my floor, he's a good guy, and he does stop by to drop off packages when they show up. (A new sofa in the mail today, a little more comfort for denizens and future guests. . .) Anyway, I told him, "Nah, it's not the flu, I have cancer." And Sam just kind of looked at me, "Jesus, Scott, don't tell me bad news.... What kind of cancer?" It took him a minute to mentally locate the pancreas, and he tells me he's just taking biology right now and has been learning these body parts. He finds it in his mind, then just says "Ah, don't tell me such sad news."

Just straight up, a moment. He didn't know what to say but, like so many of us have learned, if we didn't already know, that's not nearly as important as the sentiment involved. His sincerity was touching. It was just a small real event for the day. I don't know if I should call it a "bright" spot, it did bring some odd relief though. The small human connections.

Today's Franky Scale, related to this event, and seemingly increasing in its import or the degree to which I feel it defines my life right now, is low. Today's been down there, probably a 4 most of the day, though in the last couple of hours there's been some relief. It kind of marks this whole week, a tough one overall. A bit of slide, that.

I wish there were more to pass on, or better to pass on. Maybe with a little more time. Soon it will be thanksgiving, I'll be headed to Zion again, that strange spiritual testing ground of my youth. Family, friends, old places. Memory. Memories. And all the young kids running around in my family providing some sense of future. The travel itself I'm not psyched about, though it's a very manageable trip, still I am looking forward to seeing everyone. So that comes soon. For my friends there I hope you'll be able to stop by — I might not be incredibly mobile there but I should be available.

All right then, just that for a check in today. Thanks again to everybody for the good thoughts, the support, and the love. On we go, for now at least.

P.S. "pho" is soup. No repeat required :)

11.16.06 Side Effects Roll

2006-11-16T13:30:00.000-07:00

The past few days have been greivous on me, nothing written and equally little done as a result. That double shot of chemo on Mon and Tues really add up. The targeted-therapy drug I take daily, tarceva, is the cause of the acne-like side effect but I'm not sure if it's contributing to any of the general nausea or junk sickness. Of course it's not "junk" sickness, still it's just as crappy, dim-light, and cold-water. In any case, today is Day 4 of this new cycle and the nausea, fatigue, and motivation sapping have been severe. Worse that other cycles of chemo? Hard to say.

Some of those who have been very curious about the glyconutrients and their effects might now ask how I'm feeling with them. I'll answer again — who knows. I don't konw. I think "just wait and see" is the only answer. If they've been making me deal better with the chemo, that means the chemo otherwise would have been just about too much to deal with. So my guess is not much effect there.

My chemo nurse on Monday did say that my white blood cell count and nutrophils both looked noticably higher than normal, and asked if if I've been doing something "different." The suggested cause was glyconutrients; as the only really different factor in my diet or treatment/s. But I'd advise the utmost caution in how to read this initial, and not-quite-yet stable change in my labs.

A reminder, too, that the real results appear in other forms, specifically in the form of less cancer. Obvious, yes, but I promise you I'll have to explain this whole thing again a dozen times even to some who "read" the blog.

Franky Scale: 5-6. An improvement from yesterday, which may have been a record.

What I would I predict, as of today: hang tight and don't get overly excited. Stay strong and be prepared to help out more once we can figure out what the "ways" of helping might be.

11.13.06 Who Suggested Twice in a Row?

2006-11-13T19:58:00.000-07:00

Two days of chemo in a row is a great deal of suck for one week, is my opinion. I'll just leave it at that. Little recovery time, a lot of hospital bed time, . . . you get the rest. Then today after I returned to my apartment from chemo (it was about 9 am to 1 pm) and slept until about 4:30, I heard this SoundWorks Project (is that the series title?) about a journalist whose father is, was, dying of lung cancer and she decided to record as much of the dying process as she was comfortable with.

Well, the amount she recorded and the manner in which she delivered her report were enough to challenge just how much I could "handle" over the radio. Crying to NPR bespeaks a bad state. In any event, for those interested I suggest you go to the NPR.org web page and check for this story about a father dying of lung cancer, his wife and daughter caring for him, and the details of dying, slowly, in the living room, using a rented a hospital bed in place of the recliner he like so well.

Now, other than that I'm rather beat to report on my. Franky Scale might be a 5, just from sheer fatigue and the feeling of being beaten down. In terms of "new" news I'm not sure if there is much to offer but remind tomorrow to say something about my recent labwork and my white blood cell counts, for example. I think there's a CA 19-9 number from the last day of October too — I will double check but it was above 16000. High. Though Dr. Whiting suggests that due to the marker's halflife it might just be a few weeks still before we're able to know the effects of the current strategy.

Also, there isn't a great deal to say about it, but the Acne-like youthful bloom with which I've been blessed lately does seem to be tied to certain days in the cycle of the drug (tarceva); and I think I should have peaked already and expected it to ease up, less pain, less pressure under the skin of my face and scalp, less teen-age splendor.

If I can, too, I'll give some more answers tomorrow to questions that have been piling up in the Comments section of the blog. Thanks.

11.10.06 Daze and Continue, Dysphoria

2006-11-10T16:19:00.000-07:00

Things continue, this series of most bizarre events that I don't doubt any more, nor do I stand in relation of denial to, but still these which I cannot help but wonder at, stupidly. How? Not so much, as: Still?

Franky Scale, 6. Where else can the scale go. Number wise. I can't go too low for fear that I'll instill fear (in you), also for fear that I'll run out of room when the numbers need to take a dive in order to more accurately reflect the overreality of what I'm going through. The range of too low(er) is for later. So, that is the daze. Not that "this can't be happening," but "jesus, this is still going on, and there does seem to be a progression to it."

More thought on this. I only wanted to pass on a few end of week words and give a number. Further, there is not much to report on my condition, other than that it continues. There have been many more questions of late about "how I'm doing" — supposedly this is becuase I've been trying the glyconutrients and people are curious to know whether things are better — but I still can't offer much new information. No marked improvements, nor significant changes to pass on. Except the biggest visible change which is the spots or the acne-like bumps I now have about my face and neck. That's a change? A positive one, who knows? It means that at least one of the new drugs in this chemotherapy regimin is having some effect, but what kind of effect?

Like so much life,...here come more truisms, it's simply of matter of wait and see. Live another day and see how it stacks up to the day before. For me, it feels like the series of days merely increases or continues and their nature as an unbroken string of more or less the same becomes an increasing or continued tedium. Dramatic change for the worse wouldn't solve the problem, of course, but some change . . . I wish I had something more for you.

For now, another Friday, another weekend, another . . . I'll be off to see a Beckett play this weekend — there I will see if I can't rekindle some of that good old existential angst I used to enjoy so much. What used to be such a crucial yet live-giving inconvenience now stands on a far horizon (if the horizon can stand behind one), a figure draped in nostalgia, a figure I'd like to say that is beckoning. But is it? Existential angst, who would have thought this could be missed? Who would have thought there could be so much comfort in a subject-constituting dis-ease or un-ease, in the constant waiting for a guy name Godot . . . who might not even be a guy for all we know?

Existential dysphoria, or gender dysphoria, or cogito dysphoria, or all of the above. What precisely am I getting at? Good question. Hopefully it will produce some angst in attemtps at the answering.

11.08.06 Shaking Your Head from Side to Side

2006-11-08T17:09:00.000-07:00

About all one can do after seeing the Democrats with their success last night, and still this morning. Rumsfeld's departure, apart from being 6 years late, was the best goddam thing that's happened in US politics in a long time. That raises my Franky Scale a full point, regardless of my health. I just read that Bob Woodward book that came out recently, State of Denial, and the thing outlines Rumsfeld's below-the-belt, unethical, sucker punch Machiavellianism quite effectively. Reading it was a strange exercise in slow masochism. One of the greatest problems, I'd say ethically but many of you might call it morally, with this — he never gave two shits about how many lives his megolomaniacal decisions and behavior cost. He was a breed apart.

Let the subpoenas begin!

A different note. One point up on the quality of life for a day. I'd been planning of writing about a new side effect — some genuinely exciting blog news, right? Something I thought a few of you would want to follow, however. As a result of one of my new drugs, I believe it's the oxaliplatin (or is the targtargetedrapy drug tarceva? I'd better check), I've been getting some increasingly sensitive skin issues. Acne like spots appearing to provide me with a (false) bloom of youth, reddish blotches too. The latter are small enough to look almost like acne, and both types of spots, if left alone, are inconspicuous enough to not cause a stir, but rather they seem to give me more color. Or just draw a second glance.

Why do I focus on this? One reason is that I was warned about it, but also told that -if- these side effects occur there is a greater likelihood the drug is working. No promises, mind you. We never get those. But I definitely have the side effects and they are conspicuous enough for me. Therefore I'm hoping for some positive effect from that one drug at least. To have some success in my treatment/s right now would be quite a pleasant surprise.

After the shake-up of Washington's primary evil cabal (yeah, don't get too comfy with the Dem's either I'd say), maybe there is some bit of room to hope. In any event, I almost shit myself this morning when they threw in the bit about resignation among the standard election talk.

Franky Scale = 7.

11.07.06 Update..Hope for Elections....?

2006-11-07T15:06:00.000-07:00

OK, who knows about the elections? We're all hearing the predictions and the worries, the hopes that there might be some alternative to the Republico-Fascist powers that be. Just go vote, or send in your ballot. The gesture that seems increasingly futile on the one hand is all we've got, for the moment, on the other.

For me, let's say Franky Scale is 6ish. There's been some lesser discomfort lately — both a good and a bad thing — which I think is coming from the "new" bed, the standard expensive mattress option that I recently went for. Sore shoulders and strangeness from not being able to sleep on my back or front. All, I hope, just minor adjustments of learning how to sleep and get by under my "new" circumstances.

Now, I've been offline for a few days, quite busy with this graduate student's PhD defense that took place yesterday. She passed, by the way. Congratulations to you! It was great to see, to have that bit of progress, to have someone's life take a positive step forward. And though I wasn't able to play an enormous role in the process, it was immensely satisfying to help out a bit. Passing on something like mentoring, some kind of knowledge through experience: these things have taken on a new importance to me now that my capacities to contribute are diminished. Which is all to say, though it was physically very challenging to stand up and post yesterday, it was good.

And the point of that paragraph, as it began, was to say that though I've been offline, my guilt-trip about overwhelming response post had some effect. I did get a long comment from Slarry, surprise :-), more questions, and requests to fill in gaps in my story of late. The overall story hasn't changed, the treatments are largely the same, the issues of pain and managing life are similar, but I suppose there are some details that are new.

The glyconutrients, I don't know. Do they work? No one will know that, unless there is some "miracle" that occurs. So I can't say I'd recommend them, nor for what. Nor can I really take the time to tell people how they're supposed to work or why they are worth me trying them. That's not a satisfying answer, I'm sure, but all I can offer for now. I suppose any of you can request info (they have these DVD infomercial things) from Mannatech.com, but beware of the sales pitch and the MLM craziness. I know "hope" is a good thing, but make mistake that these people lose their rationality and they definitely try to sell it to you. Their slogan is "Hope, Health, Opportunity." But if you watch the infomercials, they give you the impression that it's really just about health and hope for relief from disease.

Do we fault them? They're capitalists like most of the rest of us; or like all of us in terms of our socioeconomic participation. It'd be great to escape that enchanted, evil loop, but I, too, need to rely on the traditional medical establishment; I, also, need their drugs, their treatment, their medical degrees. So it goes. We may make a bit of history but only within the situations we're given. Anyway, I take these supplements now almost every two hours.

I still do chemotherapy too. Despite the fact that some of the MLM people say things like "That'll kill ya faster than the cancer. You should rely only on glyconutrients." Well, when it's your life on the line, you do it then. But please stop telling me about it. Chemo does suck, you're right, side effects like nausea, diarrhea, no appetite, wasting away, depression no doubt, etc. But it's also the only route that has any empeempiricaldence that it has helped some people, to some degree. My first round of chemo, at least, brought me a few extra months. That wasn't from taking extra multivitamins. Not to say the latter will be worthless, but they have to be part of a larger integrative approach. Do what's known to "help," even if only a little, and also do what is more risky and unproven.

So I haven't given all the details, I've stayed away from the increasingly complex psychology I experience daily, there are appointments I haven't described, but it's an update none the less.

11.0.06 Due to Overwhelming Response

2006-11-04T18:58:00.000-07:00

For the readership, I realize that weekends are not Big Blog times based on the traffic reports I get on this site, and that makes sense. Still I was a little surprised there were no requests at all for additional info from my end recently. So be it.

I did have an unexpected doctor's appointment yesterday (resulting in three new scripts — at least temporary ones), a night of some relatively new symptoms that necessitated that, other areas of life are just gliding as they tend to glide — surreally most of the time — there's a symphony tonight downtown I'll be heading to with Kim. Tchaikovsky's 5th, and some work by Berlioz, too, I think. Then a red letter day on Monday when my first graduate student is going to defend her Ph.D. dissertation. One for the academic genealogy. (Which makes you, David, a grandfather in a sense. Doesn't it?) An event I still would have been excited for, however, one that takes on dramatically new significance in light of the Big Casino life I live now.

Today I got a massage, lying on either my right or left side the whole time. Great overall, including some tips about how to stretch more effectively so I can continue to sleep on my sides and not get so tightened up in one shoulder or the other.

Franky Scale would float in around a 6, though the massage period would bump it all up to a 7, a little spike.

[Psych Check]
•My feelings and veiws on this whole experience are morphing once again, a kind of global shift where I'm seeing a period end, a period beginning, wondering all the while whether "period" is even an accurate way to describe the category of experience I'm undergoing, or one could say that we are all undergioundergoing own particular ways. Nothing every happens in a vacuum. Just a vague allusion to feeling here on my part, that they exist, slide, shift modalities, every changing, just to announce a change but not to flesh it out that change just yet, perhaps because I cannot quite get my intellectual paws around it yet.

•Some time back there was more Schock, there was more Fear or Resignation, there was more Curiosity, there even seemed to be an unexpected sense of Enlightenment, satori or kaehwa or call it was you will. It's been a complicated clockwork of expreience through intellect, rawest feeling through most naked experience. What to say? How to describe it? Unidirectionally? Through time, through space? Dialectically? It must be the latter, as anyone who knows me well will attest, good old-fashioned dialecic with a negative twist. Straight up.

Too, it looks like I'll be in SLC for the national genocide holiday. Likely not a long trip but a visit none the less. From Thursday to the end of the weekend I think. (Why does everything seem and feel so tentative these days? Always a "maybe" "as if" "if only" and "perhaps" . . .)

11.02.06 Getting Back to Speed

2006-11-02T19:13:00.000-07:00

New pain requires a new regimen for managing it. So now I’m taking 180 mg of oxycontin daily at regular times, three 60 mg doses every 8 hours or so. (Starting two days ago.) Then to smooth over or catch up with pain in the even to the infamous “breakthrough pain,” there are 5 mg oxycodones to take (the difference being that these are not time-released and the oxycontins are). For about three weeks or so I was experiencing consistently more pain and there was no more effect to be had from hoping that the NCPB (the “block” procedure) had actually done any good.

I’m also at the mini-milestone of just finishing my first week of taking the glyconutrients. These are being taking along with the latest round of chemo, to make that totally clear since one person I heard from was surprised and thought I was taking the supplements in place of chemo. Statistically, empirically speaking, however, if I were to quit the chemo at this point that would mean it’s time to schedule final visits with everyone. So that is not part of my treatment plan right now. The point of the supplements was precisely to try one more avenue of treatment that wouldn’t hurt but might help, but not to endanger myself more than necessary. I got enough of what feels dangerous as is.

In other areas, now that the dust from moving and a number of guests has settled, I’m thinking it might be time to get my head shrunk once more. Or maybe a few times more, depending on how it goes. The process of psychotherapy is always complex, potentially, and when terminal illness is involved I dare say this is exponentially more accurate. My shrink, referred to me through the SCCA, did her training in psycho-oncology, a sub-field I was unaware of before my life took the radical oncological turn. Having trained in how to do psychotherapy specifically with cancer patients — though she will only use the term “survivors” — makes her extremely valuable to me, however, despite that she is younger and has perhaps less experienced with Big Life Issues, if I might generalize, than I would have preferred. But what do I know?

Picking a therapist’s got to be a gut thing, no pun of course, as much as an intellectual thing. And all things considered, now, I feel like a paid sounding board might not be bad. I’ve come farther than the initial prospects, that is, lived longer, but also there is every indication to believe that that fact also means the months remaining are becoming increasingly, what, precious? Just more to process, more unexpected experience, some more practical issues. All these weird phenomena that get labeled under the category “end of life” issues.

Even after all this time, “all this time,” of being sick and knowing what’s coming I still feel the 2 x 4 feeling now and then, but it’s slower and I feel like I can see it coming. So I stand there, or sit, see the thing swinging my way and wait patiently. More of a dull thud than something sharp and sudden. Like the first time I heard, the first no hope news. And yes I know my mother and maybe a few others complain and protest whenever the words “no hope” pop up, yet, I don’t feel it’s responsible to ignore that news . . . it’s getting muddled, in fact, trying to explain my way through this. Which should point out how difficult an issue this is to work through. It may not make a world of sense, so it’s just words getting passed along, and that’s the point of forum, no?

One other point, since I’ve been off line for a bit and slacking in the blog world, let me ask, are there any issues I’ve missed and haven’t been talking about that anyone wants to hear about? I know there has been a restaging, slight changes in treatment, a move, etc. and there’s a good chance I’ve missed some things. So please just post a comment if there is anything.

Franky Scale: a 6 plus today. Quiet and somewhat more painless, so that’s a “plus.”

11.01.06 Any Serious Cure for Hiccups? — Guest Blog

2006-11-01T12:36:00.000-07:00

[2:15 PM] OK, the excitement mounts as the day progresses, not just for my hiccups. I receieved the Gues Blog from Daisy / DZD that will be posted today. I'm just going to check for typos and tease you all a little longer. Pleae check back later on for another perspective on this strange saga. It's down below...

* * *

Can anybody help with this? The last time I got hiccups it lasted for about 6 hours and was less than entertaining, this time it's been about 45 minutes and any suggestions are welcome. Note, I did check online last time and it seems like I read almost everything in the world and not a single thing worked. Still, my fingers are crossed. What do you know?

Franky Scale: 5ish.

Guest Blog by DZD

[Date: Mon, 30 Oct 2006 13:00:11 -0800 (PST)]

hello faithful readers. dzd here, usually a faithful reader/bloggee but for today, elevated to the glamorous role of guest blogger due to our recent journey to Seattle. who I am in general, and in the life of our much-loved Mr. J, is simple — I am an old friend, I am an (old) “ex,” and Mr. J holds a seat in my pantheon of Important People.

I was nervous to see him. it took me a while, but I figured out why. I discovered that while I really wanted to see him, what I feared was that final moment, that last time saying goodbye, when my visit was over. (in telling this to J a while back, he said it is a familiar syndrome with a name even, the Last Night in Town Syndrome, and that most of his visitors experience it - so I’m not so special ;) - my words, not his). at any rate, I hate the idea that this might be the last time I ever see him. Mr. J is someone I always assumed would be out there somewhere. whether we were in regular contact or not, I counted on being able to call him up, drop him a note, and say, “where are you? what’s your life all about?” it breaks my heart to think that may not be the case. in all truth, I can’t get my head around it. I don't understand.

which brings me to how it felt to see Mr. Jones. was it hard? was it sad? yes, most definitely. it was also normal. it was nice. he sat across from me at brunch, later on drinking coffee and eating doughnuts, at his home for dinner. he is the same solid person, a tangible presence, I can reach across and touch his arm. I can sneak peeks at him when he isn't looking to check and see if he seems different. all reports thus far are true — he looks mostly the same, if slightly more slender, with shadows that cross his face now and again, with a gravity to him that is weightier than before. like I said, I do not understand. it is hard to believe how sick he is despite what we know, what he knows, what he has to constantly face.

our conversations phased between heavy and lighter. it was good as always to hear him talk, to know that he is still the same smart, reflective person. there was no taboo subject. how to best handle complex relationships, friends, and family. how to “do” what he is doing and still try to find little bright spots, little moments that are pleasant. how nice it would be to be able to live in denial more often.

it was a good visit. we (me on my own, as well as my little family unit — Chris & Sadie) spent as many moments as we could together, in between resting periods for us all. I got to see the cats. I got to see J’s life: his apartment, his neighborhood, his city. and of course I got to meet The Girl in his life, who I respect and appreciate, and who is an amazing cook. thank you both for your graciousness and hospitality. it was so nice to just be in your home and eat a meal with you while Sadie cat-hunted. and now we’ve been introduced to mini-kiwis — a very exciting discovery (no more of that furry stuff to deal with).

on the surface of it, an observer might think — it was a standard sort of visit. out of town guests, your usual kinds of activities. but it was not that at all. it was loaded, for sure. there was a heavy knowledge we all carried with us, whether we were talking directly about it or not. (we did both, talked about it, and didn’t). there was a poignancy to everything, each detail mattered. memories floated everywhere.

now I think this can’t be the last time. I can’t imagine that it will be. I will see you again. you are dear to me.

J, there are many things I wish possible for you, though perhaps they are impossibilities. early on after you’d accepted the position at your place of work, you told me that life seemed sort of mundane — each day similar to the last. working for a living and all that. in part that is what I would wish for you — the mundanities in life without any angst. the sense that things could just go on indefinitely. waking up in the morning, going about your business, coming home, feeding the cats, sleeping without pain, waking again without worry aside from the day-to-day variety. the mundanities take on a certain sparkle depending on the perspective from which you view them.

one last thing — a memory, of which I have many. but this particular day is one of doing regular things that took on a certain sparkle due to the company kept. it was Salt Lake, early 90s. a fall day with some rain. if memory serves, we drank some coffee. we browsed the packed aisles of an art supply store while I picked up things I needed and things I didn’t for school. the smell of paints and sharpened pencils and oil pastels, pads and pads of fresh paper. ah. we loved it. most likely after that we ate some food at Cafe Trang or the Red Iguana. then perhaps we napped, read books, ate again, visited with friends. maybe watched a movie. it was a place and time when, cliche as this might sound, everything seemed simple and the company — yours — was what made everything so satisfying and important. thank you for that.

10.31.06 A Rather Rocky Month

2006-10-31T22:37:00.000-07:00

Blog at long last: it's good enough for now, after the kind of the days the past two day have been. I need to pass on more info about the restaging, measurements, information for nerds, tales about taking the glyconutrients, and so much more. Here, for now, are just some of the main points. With a Franky Scale around 5 today.

Chemo today from 2 until almost 7 PM. Of course, we were early, which resulted in the longest lobby wait since I’ve had yet. Ten minutes early will get you into your table/room about 45 minutes late. Today’s drug of choice was a new one: oxaliplatin. New potential side-effects like freezing cold hands if you stick your hand in the fridge or freezer, touch a cold beverage, or numbness, tingling, and/or pain at general exposure to cold, then some something like acne — in how it looks — but just the aesthetic part. Like all the chemo drugs there’s a lot to it. Today, too, I got my Lance Armstrong shot in the arm, “darbo,” short for darbopoetin (sp?).

The drug for chemo yesterday was gemcitabine, one we should be quite familiar with since it’s the one drug that has been part of my chemo from day one, kind of the backbone drug. It was such a lovely and welcome experience yesterday evening to know that I had been thrust again into the hell of hot-cold sweats all night long. It’s far more effective than standard insomnia for keeping you really tired. Chemo yesterday was

Before that Sam was here spreading calm and joy, and I hope, enjoying himself to some degree. There will be more details on the weekend, but first, I know it seems like I’ve been lost in space because of the lack of internet connectivity and I wanted to fix that problem. It will take some time to filter through and then read emails from the past two weeks, but I fully intend to.

Pain
Markedly increased pain for the past few weeks has been the real story, the answer to those who ask and genuinely want to know “How are you doing?” Parts of many days have been spent simply down, lying on a side, sometimes in bed — though on the floor or a rug is just as good for me, a lot of hours lost in this. And a bit more mental energy than I’d like. Every time it’s a matter of recognizing it (easy), addressing it (bit harder), and then just waiting it out. It’s been to the point of upping the daily dosage, playing lots of catch-up, then I will be seeing a Pain Management Specialist at UW soon — I need to call tomorrow to try and push ahead through the current schedules on the books. All this was the core of my talk with Whiting today during my long, long chemotherapy “session.”

Overall I’ve been lost, help captive, living estranged not only from blogging but from email as well. (Sure, feel free to read into that all the metaphors of your choosing.) So there you have it and here I am. Our signal is strong and we should no longer have any outages. With the apartment nearly ready, it’s become much much more comfortable, and we’re almost there. Knowing where, of course, would always be nice.

10.26.06 Update of Trivia

2006-10-26T17:51:00.000-06:00

Very little new is happening, so I'm afraid there's not much to tell other than the day-in day-out of pain management. That seems to be the constant companion in all this, even during the alone hours and the wee hours of the night. My conclusion on the celiac block procedure is that it was a dud. I'm thinking of talking with my oncologist again, but after trying for the first couple of weeks to find some effect and solace in it, I have to admit it doesn't seem to have helped. Alas. Do I do it again? Go to sleep for another 15 or 20 minutes while they put the snake down my gullet, wait for the alcohol shot...? Hm.

Today's Franky Scale might fall in the 6 plus area. But tonight I'm getting out "on the town" determined not to be kept too down by the physical trivia. Then tomorrow Mr. Sam will arrive and I expect a very good, though mellow weekend. Not that I've had any crazy weekends for a while, unless you count moving and having your mom in town.

I'm still on borrowed bandwidth, but waiting for a DSL modem in the mail and then I expect to be back in daily annoying regularity. Till then.

10.25.06 From the Depths of Morning

2006-10-25T08:29:00.000-06:00

It's early and I'm stealing bandwidth again. Difference is that I haven't been motivated or seemingly capable of moving myself into any kind of coherent thought or action for some days now. Strange as it may sound, being disconnected from the internet has been a part of it. That problem should be remedied tomorrow. Until then I've found a corner in the far bedroom, the only bedroom in fact, where there often seems to be some unused bit of bandwidth I can snatch. So here I am.

As on all mornings, there is no way to give a Franky Scale this early, but if I gave one for last night it'd be a mid-5. The nights have been diminished of late, for a variety of factors, though the main one is pain. The neurolytic block seems to have done approximately zero good, looking at it from this point, and at night there have been numerous occasions of good old "break-through pain." What can you do? As Dr. Whiting said some time ago when I was experiencing a previous increase of pain: "The pain is your cancer talking."

Not comforting, but I guess, not a thought meant to be. Just one of those cold, chiseled, statements of what is real.

We'll see how long I can maintain this today, maybe return later, perhaps add something about life these days, but for now, top of the morning to you.

10.22.06 Remember the Sabbath Day

2006-10-22T18:45:00.001-06:00

Franky Scale today 6. Though the weather has been perfect for the past couple of days, it came with DZD and Chris and Sadie's visit. The a few clouds slipped in just after they left. We spent time together yesterday over brunch, coffee, and dinner, then a farewell coffee this morning in place of church. I failed to ask but I'll see if I can't get a guest blog from Ms. D....(would you?) Before they left, Sadie reportedly was ready to take the cats home with her. "Time to get the cats and take them home." To sunny California weather.

The rest today is calm and quiet, reading time. Won ton soup for lunch at home. Resting up for the "big" week when the glyconutrients are supposed to arrive; they're on their way I'm told. Another phase of treatment, if you will. Then chemo, the third full round (or third round with a new mix of drugs) begins a week from tomorrow. Another short avenue to walk down and see what's there.

10.22.06 Remember the Sabbath Day

2006-10-22T18:45:00.000-06:00

10.20.06 More on a Day in the Life

2006-10-20T17:08:00.000-06:00

[the internet window opens for a few minutes, so I do a quick copy and paste job here below. it's slightly dated material, a few days, but it remains accurate for then and various times still now...]

Blog on 17 OCT, written from 10/17 to 10/19.

Progressive cancer. Real timeline. Real-time reminder. No more leeway. No more options but the Miracle. The Miracle and Its Followers. Anger, frustration, pain: these brought to me by the god damned shouts of “Here it comes, here comes the Big One!” referring to the thing. Not hope per se I hate. The idea of pushing it into my face, the idea of shoving forward something that is statistically so improbable. Beware to the salesmen and women of hope. Not to say we’ve quit, or will, just to point out the precarious balance between hope for the self and understanding of the other. All of us stumble, we all get tripped up.

Cut out all forms of *social* enjoyment. All forms that any other would understand. And oneliness results. Nothing but, to find your enjoyment w/o any others in the world, pure seeking/finding (simultaneous same moment birth-fruition enjoyment-purchase) [jump to below then return to finish a thought]. Loved ones, friends, family are all excluded thereby, all left out cold, all left in their community, the one I’m slowly being ostracized from. No person has ordered my expulsion, no gods are angry, rather the mindless dice of the universe, thrown by an agent with no hands, brought by a messenger with no legs, conveyed and explained by a deaf mute diplomat.

It isn’t final, it’s musing. Take it as such. All thoughts must be allowed despite discomfort. Discomfort and pain will exist either way, so why not face the various possibilities? Why not live in acknowledgment? To those filled with the most hope (I know you) think of even the most fundamental foundational myths. The second myth, that of the Garden in one tradition. Facing the worst possibles was necessary and, if you will and for lack of a better word, predestined: there was fruit and an Act to be committed, that would bring ruin to paradise. What was the choice? Was there a choice? Everybody has to take a bite. You don’t have to like apples but you do have to taste them. There is no other way.

Cancer is the capitalism of the body. It grows unchecked, until at some point it will eliminate itself by eliminating its host, its own means of production — me / I will die at the hands of Capital as metaphor. The materialist’s metaphor, the world where words are things and things are words. Of course I will. Spending the better part of the past two decades deep in study of this Thing, the production and replacement of people with the Thing (C), and now the Object of my study is going to get me. I’m being chased down by a nemesis I thought existed Out There somewhere, in the world and constitutive of our world. It’s taken on material form inside me. And revolution. That impossible option (could we call it “hope”?) that remains impossible until it occurs and we all see how inevitable it was. Someone said that.

Another metaphor, that of cleaning: as therapy, as distraction, as practicum, as obsession. What does it mean to ignore human interaction, interaction that is daily becoming more precious by its increasing rarity, for the cleaning domestic space/s? How to negotiate the travel between healing ourselves and hope for healing and just continuing on with as little resistance as possible, which is what we all really want?

Franky Scale: 5 to 6. This would be on the 17th, another connectionless day.

What is new that becomes appealing, a list: Warmth. Absence of pain, dumbly of course and too plain. Fantasy, a novel by Tolstoy or Balzac or Zola with the long drawn-out pans of whole swaths of society as means of escape, fantasy like the Lord of the Rings where the films might be just as good as the books because they now take just as much real-life time to get through as the old-fashioned way of reading, any long stories of something slightly to radically askew or even full allegorical replacement of what’s real. Why? To kill time — ironically and pointlessly, that. (Yes, even I see it, the i. and p., but I must admit them both still, and admit in at least two senses of the word.) To distract the mind from the Real. To instill momentary and delimited hope, even within the scope of screen walls, the bounds of reading time. To be another escape from all the necessities, the so many little must-dos from pills to calories to soap and water to last-“minute” legal paperwork like wills & DNRs to maintaining salary to “finishing” a number of professional tasks that alternate on given days from more to less important — no, it’s binary, just the variation from worth doing to not worth the time. Who knows what will help on any given day.

What else new: small moments, looking elsewhere, rain through a window, a comfortable silence, bits of sleep without dreams. A recent one though, where I am to be tending an old friend’s young child, who is helpless without me, and I am intensely aware of how much depends on me, but it’s all I can do to keep myself awake and responsible and watchful and caring and protective. My own inability to stay awake — in the middle of sleep — keeps me from being a good babysitter. Stuck in this unwaking state with my friend and his wife’s expectations resting heavy upon me, heavy like the sleep upon my eyelids. The child alone with me. A nightmare but still a dream, so I owe you a quarter.

Can you translate all this into numbers? Can this wandering narrative transform itself into a scale? There’s a number above and lots of words in between. More numbers will come. More words, too. Is it all clear about the restaging? The cancer is progressive and the tumors have been growing, which means the last round of chemo was not effective. There is one more round of chemo with other drugs to go; also there is a targeted drug therapy to add to this, with a drug called tarceva (maybe I can do this in a later post). I can’t really explain the hoped-for mechanics of this part of the treatment, all I can do is trust it might do something good. There’s that and the glyconutrients, to see what they add to the mix, what they take from it. With all this there’s waiting and enduring. Living until then.

10.19.06 Stealth Post: A Day in the Life, Stage IV

2006-10-19T16:20:00.000-06:00

Seems like the last few days off the air have been an eternity. To me, some of you might be thinking, ah, not long enough. ;-) Well see. I have a draft and a blog to post but I'm still battling with "stealing" bandwidth until we get an official internet hook-up in the new apartment — till then it's piecemeal like this. My apologies.

So the key points: Thank you so much everyone who's posted and sent email of support after the restaging. It does suck and all the other unpleasant verbs and descriptors that have and have yet to be used out there. Just not good. Seems like a primary task for me now is some kind of peace-making, some way of coming to grips with this shit, which I'm hesitant to do. Then too, there are still some concrete tasks to slip in between bouts of paralyzing reflection, body-curling slow pain waves, debilitating nausea, and the related shit. No, none of this is maudlin, I'm just not going to bother with couching anything right now because the time vs. politic speech ration seems unbalanced and unfair. Just trying to say this is now what a day in the life is like. More to come on the trivial details later I hope . . . . Though references to "fairness" (above) I also don't like, so scratch that. Appealing to such implies higher powers or processed that could make it all just and fair, and look around to see how often things are well balanced.

In any event, give the Franky Scale a wobbly 6, which makes it go both up and down. There is less nausea this many days out from chemo, the last cycle of which was cut one day short by the restaging. When it's not working, what's the point, that was the logic. But now I'm thinking "Do I start the next type of therapy on Monday or a week from?" A question with both psychological and physiological consequences. Telling, but telling what? Well, let's see first which choice I make.

I will try and get out to a cafe later today so I can post something else/also. For now this is what I got for you, from the calm grey skies of the emerald city.

10.16.06, Restaging Results: It's Your Cancer Talking

2006-10-16T18:19:00.001-06:00

No Franky Scale today, especially since the restaging result will do something to show that the FS doesn't always cut through this situation at the best angle, give us the best cross-section of life to see "how it is" from. My cancer is progressing now. Just a simple answer, progressing. Progressive stage-IV cancer.

All the nodes that were enlarged before are now even larger. The liver tumors, larger. Pancreas, the mother tumor, larger. And the lungs, the small nodules that appeared not to be cancerous before, well, those are larger, too, so the new diagnostic approach might be "Go figure."

This is no artful telling of things. I just wanted to pass on the news and don't have the motivation at this moment to make up a more entertaining story. Besides, there are times when the simple straight-forward telling needs to be left to do its work.

Later I can write about what it was like to have my mom there, I was there with my mom and K, and about how the discussion with Whiting shifted gears slightly into more euphemism and circumlocution. Why do we all get the impression that she wants this? Does she? She and I had a pretty frank talk about it all after coming home — there's another scenario to knock your socks off, sit down with your mom and discuss dying plans, what actual bed you might want to kick off in, and who might be around.
What a day. More later, just thought I'd pass on this much.

[I also allowed that comment from an anonymous person about "glyconutrients," which are still on the docket, but you know, I have thought better of it and this is not the place for people's sales-pitch testimonials so I'm going to yank it. No offense to the poster. But the comment was just about how some product can change your life and that's actually offensive to shove that kind of so-called "hope" into the face of someone who is really, actually sick.]

10.16.06, Restaging Results: It's Your Cancer Talking

2006-10-16T18:19:00.000-06:00

10.15.06 See Attached Comments

2006-10-15T19:13:00.000-06:00

OK, parental/sororal visits are demanding, at least in terms of focus. In addition, I'm w/o any internet service right now so get any posts up is miraculous. So the bare bones. Spacely posted a quick summary of her take on her few days here — my mom is still here, so we must await her guest blog or report. She will go back and report, I'm sure. Franky Scale, today maybe a 6, really up and down with the long-hours of moving (on that next para below). Moving day was not too bad at all FOR ME. With all the help it was the easiest move I've probably ever had. Some of the karmic cycle, must be. That day may have been more of a 7 until the end of the day, when the quick wind down must take place. That's natural.

Moving: a huge and wonderful thank you to the hearty souls who spent their Saturday moving over here. From one floor to another, one view to another, one space to much more. The latter being the best aspect of it all. Thank you, thank you, thank you. Pizza and beer — I think there was not a single beer had by any mover-friends, which disturbs me a bit — are hardly enough. Like I said in the invite, however, you will receive some life-lessening in the big wheel of recurring-life game. It's all arranged.

Restaging: the film has been shot, number requested in blood work, etc. so now Monday morning I go meet with Dr. Whiting and we "restage" the damned cancer. We hope, too, that it is has been damned. No more, thanks. Whether I post again tomorrow at any point or whether it has to be in another day or two, based on cable/internet hook-up, I'll give the full details on where it's going now, how it's getting there, or whether.

Too, p.s. to other family, please don't be worried or be impatient if I'm not able to talk on the phone every day or even days at a time, there's a lot going on. Think about hosting mom, in your house, which some of you have done.... that should be sufficient explanation even without moving.

10.10.06 Brother Can You Spare a Dime?

2006-10-10T22:26:00.000-06:00

Okay, first off this post is in no way a request for money to be sent my way. Thank you in advance if you would have thought to do so; my purpose is, rather, the pissing and the moaning.

On the MLM. The big secretive company that sells the glyconutrient I decided to pursue further. The next step in my treatment program, then, as the standard medical arsenal is slowly exhausted on my cancer (more slowly please...), is to take this stuff "religiously" (below) and hope on the wings of a dove. Maybe some of what they claim will obtain for pancreatic cancer, stage IV, fucking serious as a heart attack, and late in the game. The only way to know is to try it. This is all past, I decided that part recently.

Turns out it will cost me nearly, no, more than a grand just to walk in the door "get all the necessary product to begin, [however] and actually that includes a five month supply of most of it." In MLM land, you don't describe your commodities in the plural — why, I'm not totally sure — but it's a consistent practice to discuss "product." "How much product have we got?" "Not enough! People are dying out there!" or something like that is what I imagine. Even if there are 16 different and unique products involved. There are more at issue here too, not just the magical mannose extracted from aloe vera plants and purported to do too many things to list here. (Not without sufficient caveats on the role of the FDA, our gratitude to them, and the implicit radical fear and loathing of that entire organization. This view, too, is as common in MLM land as calling what you sell "product.") So if I spend approx $1300 I can begin, and of course, they all tell me, they would really like to see me get on this ASAP. For my health of course, surely nothing so cynical as anyone's income stream. For me, a sort of quagmire.

The clear point is that the treatment plan of these nutritional supplements has been set up in such a way, perhaps with good intentions but still no doubt with business and profits in mind, so that a significant initial investment is required. This one "nice man" who had called me from the South to tell me his wife's success story — odd, don't you think?, that he calls me to discuss his wife's story... she can't talk? what? — and he tells me how he thinks the 10.99 pack, also called the Extended Pack, really what I should go for. In part I could feel his "sell level" elevate so I figured "If eleven dollars is the deluxe version, then I'll be able to manage." You see it coming don't you? 10-99 obviously stands for one thousand ninety nine dollars, just under 11 C notes. I'm an idiot, sitting there thinking "Hey, 10-99, not too bad." Not fucking chump change, this 1,099.00 when you are allowed to see where the comma goes. Yes enough to make me think twice about this whole set up.

Do I do it IN SPITE of all the signs I know too well about MLMs, about bullshit testimonials that are not ever verifiable, results that are not empirically checked, research not repeatable, and so on and so on and so on. How do the people involved not see all these holes in the package? How does their faith become so blind and robust? Religious extremists are the same, of any type, Christian, Zionist, Islamic, Protestant, any and all — extremism mixed with religion turns the future as an illusion into the future as sheer nightmare. And all the people who DO NOT worry about how close church and state have become since Bush and Boys started to do there thing in Washington. Another mind boggler. Not to see that danger?!

And the testimonials: god damn. I've told every one of them not to even start because the testimonials mean ZERO to me, they are nothing, less than nothing they might even alienate me, they are just stories, I don't know the people, the people have vested interests, YOUR COMPANY HIRED THEM, HELLO NUMBNUTS!, etc. They still just don't hear me and go on to talk about Aunt Melba, the doctor who is one of the "20 best" in the country. (Did you know there is an official list ranking the best doctors in the US? Right next to the sales paperwork on that bridge I was telling you about...) They tell, they tell, they droll onward, inhabit my ears w/o permission. One or two have enough sense to finally hear me after several very polite warnings from me.

Long and short: I'm deciding what to do. Onto the credit card? Am I going to do it anyway so I may as well get started? Is 200-300/month really so much for a 5-6 month treatment? Of course not if it reverses the disease course, but do you want to know what odds I'd bet on that. Right. I'm stuck? Ideas? Comments? Questions? I did finally get an MD's email address who supposedly knows this whole routine and has been involved since the start — yes, he's got a stake too but perhaps I can get some insight from him.

Ugh. I cannot go on with this tonight, and this after spending half the day at work in my office, experiencing several mini-revelations, slogging through far too much pain this afternoon, just the shits from about 2, and I had this work meeting at 3. Franky Scale then would get a 7 for my verve and anger, mixed in equal portions today, and for the a.m. hours when it all seemed more possible; then it drops to a low 6, just there, hanging, flacid, tired out for the day, as pain is just that, so goddam tiring and impolite.

Then that work thing. I do think those of you who work where I do should work, kindly, on getting me out there more: it's counterintuitive but there is some good to be realized from my sitting this skinny white ass down in that expensive chair to produce something.

10.09.06 What I Got to Tell

2006-10-09T15:26:00.000-06:00

Frankly there are days when I don’t feel like blogging and telling you anything. I love you, don’t get me wrong. But at base, the frankest level of all, every day struggles in some form. What good does it do? Is it just the connection to you and the communicating of information? Is that sufficient, or is it necessary? Or do I have something “interesting” or worthwhile to say? What the hell is going on here every day? What am I getting closer to? And going through what to get there? Why does there still have to be this teleology? Why am I still looking for something, Something? It must just be the looking or a bad jonez, an addiction

(There was an Anonymous commenter.) On my relationship to anyone’s soul, let alone my own, and with due respect but still, a metaphor that must be extended: well, I have never seen myself as a gardener. I have some plants, but I always kill a few, so I always thought I was one who would spread shit around in the garden of the soul, which perhaps is a step in making it blossom, too. However, is there a link between spreading shit around and making any/one happy? This I didn’t realize, though some degree of support these days more than I expected — do you ever stop to think and expect such things, before the Tragedy arrives? — tells me that I might have at least had some friends who appreciate the shit-spreading. Ah, lucky me. Yet there is another theory, that my blog is actually related in a perverse way to Proust, this is my ironic theory (it has to be an absurd theory and comparison), and not to the quote (itself) on gardening. That is, it puts one to sleep, sends one into a dream world of memory and rest. That much at least could be true.

The MLM debacle, here an example of how an MLM could slow your life down. It could kill you — this might be a more accurate way to put it. Rather, what the salesman said over the phone, so urgently, so sincerely, was, “This’ll save yer life,” he says with his Utah accent. “You have got to start takin’ this product as soon as possible,” and his last name is Smith, another intimate Utah tie. This is an accent, I think, you simply have to know, you know it or you don’t know it. Why does it bother me? Well, to have someone call me up and take my time by talking down to me about how I’m not seeing what is so “clear and obvious” and all this “new science” he kept saying; to have a person telling me what will save my life in such an off-the-cuff manner simply put me off. I have decided to take these supplements, but not to buy into the MLM hype and life-saving BS ideology needed to sustain the motivation of a salesforce. I can rent and watch Glengarry Glen Ross anytime.

Despite this, I’m on my way and have made some calls, taken some calls, and off I go into the land of this “glyconutrient” called mannose, into a little road of hoping for something more. There’s got to be something more for me here down this little road, right? If nothing then nothing, and it’s a cruel circular logic that simply calls it what it is. Am I making any sense? If it helps and gets me along and heals me up at all then we’re getting somewhere. If not, there’s no other road to go down. So, again “so,” I’m rambling along and telling a very indirect story that has an ending picked out for it already. What the hell kind of story is that? I’m stuck with this task of trying to tell it as it happens, then tell it in some way so as to change its very narrative structure as it’s happening. Impossible in a quite different way from Tristram Shandy. Still, impossible. It’s what I’ve got to give. It’s all I got for now.

10.07.06 To Do List

2006-10-07T13:14:00.000-06:00

OK, this will be quick because I've been having a lot of grief with my internet connection lately and we're off to go "camping," K and I. However, it is car camping I'll admit. We're headed down to the Olympic Peninsula to sleep kind of "on the beach" before the colder fall weather sets in. So that's that part.

Otherwise and also, it's going to be a big month with visits galore once the move is done — and in the process of moving too. Fingers crossed. Many guest blogs, it means. Next week the plan is for my mom and Spacely to come; then DZD the week after; and I think we might have Mr. Sam out too later in the month. What hosting in store!

Since my procedure I'm having a tough time determining whether it's really worked or not. How to decrease the pain meds without being suckered into missing the required dose? It's tricky and I'm still working on that. Yesterday was very up and down for that reason, maybe a 7 on the Franky Scale down to a 5 at one point, till the meds kicked in again. Today's Scale is a 6 let's say but we're hoping for a rise and we get closer to the coast and out in the fresh air.

For now, everyone be well and I'll give a report on things once the weekend's over.

10.05.06, Fear of the Dark, Career Choices

2006-10-05T21:37:00.000-06:00

“A written sign is proffered in the absence of the addressee. How is this to be qualified?” — Derrida (Margins of Philosophy 315)

And, then too, how is it be qualified, the proffering of a written sign in the absence of the addressor? This is our task now. (Elsewhere in the Margins)

[Fear of the Dark]
Walk in the dark, I’d said. True. Still true. Think of the David Byrne song by that title, think of anything else you know that plays with the metaphor. You walk where you can’t see your steps clearly so you’re forced to just take them if you want to move forward. You stumble, necessarily, you give way now and then, you get swatted by unseen branches at face level. Holes, rocks. Small puddles, silent streams. It’s where some of us are, in a dark space where we know the movement is necessary and the movement is somehow good. Fear is just what it is, mental, avoidable or dealable somehow. It is what it is. And it is more pronounced in the dark.

[Career, Would-Be]
There was a career, something I had worked for, for years and I’d gone through, not all, but still a great deal of the blood, sweat, and tears have been spilt for it. Ups, downs, benders and straights, late-night bridges, the anterooms of retired but venerated shrinks — all this had something to do with my career preparation. Then years of translating, learning to do it better, finding those writings I can feel and connect with, meeting them, planning out their English language futures with them over drinks and drinking promises . . . There was also this sexy world of Continental Philosophy and high theory that called to me when I was a pup, college fourth year, after three years of good old-school training in New Criticism, a door opened into something loosely and irresponsibly called — and we too will call it — the postmodern. There was Marxism, an anti-methodology and a political critique that filled in and jived with all my life experience (yes, Communism, card-carrying membership still holds). Is that a terrorist group? . . . As if I had arrived. After all.

There was and is not a job at Duke University job and this is what it means to me. Let’s be bold and say this was my dream job, almost. One of three potential positions that would allow me to turn my job into what I want it to be — something that has been impossible here at UW. (You see the job once offered to me is now on the market for real, with tenure, with what I’d wanted, freedom to think and write!) C’est la vie. But that is precisely the problem. La vie turning into no more career and into c’est la morte. Not the petit one, but the big one, capital M. The one you don’t return from. When I came to UW I had a job offer from Duke also, but they were not yet prepared to offer it tenure-track. So with an eye toward a bird in the hand I chose to be here. The sacrifice was intellectual freedom, time for free and unrestricted work, and a strong intellectual community of peers. Now that door is opening again and I dare say I’m confident enough I’d get the offer once again, a prospect I spoke to the then-hiring committee about with some promise. But now. But now? How does it make me feel to simply ignore a Big Career move because I’m stepping out of my career? You might guess, it’s stifling, a bit stunning, and extremely thought provoking. I fear, though, there is nothing to do but accept this with some degree of dignity. A sad style of dignity.

Serious cause for pause, thought, reconsideration, reevaluation of this disease and what it means to me.

[New Numbers and Cancer Status]
There were number a week ago that I forgot to pass on, more cancer marker CA19-9 numbers. They have gone up, that direction we don’t like them to go, to about 8500. Just about 2000 points higher than it was at the last check. This was to be expected and the restaging next week will give me more accurate information, with the ocular proof, so we shall “see” more then. And I will still pursue the glyconutrients once I can escape some schmuck in Utah who calls and leaves messages telling me how “You need to start taking this right away, you must start today, it will save your life.” Oh, will it? Thank you for your genuine concern . . . and what did you say your commission was, again? Or did we skip over that? To try in spite of such life forms.

Not only that but to try and keep your chin up, to borrow a phrase, maintain a wry smile or shit-eating grin in the face of it all. Perhaps so long as the smile is there, the wasting away will simply waste away.

10.04.06 A Little Walk in the Dark

2006-10-04T20:15:00.000-06:00

[Two Days Ago]

Bogged down fatigued but now different from the sudden bouts of chemo-induced fatigue, show stopping not so much as rather a slow incremental and accretive phenomenon — I feel like I’m being drained out and it takes a bit longer to recuperate each time. So, this morning it was tough, tough to get up, a little extra sleep for me please, then up to take care of some life business, those tasks most of you take for granted and never think twice about like returning a DVD or grabbing cat litter at the store dropping off a rent check or following up on a new lease and rental or picking up a reserved book haircut new prescriptions cooking cutting up the food sticking it in your unwelcoming mouth (. . . I even dreamed about making marinara last night but couldn’t get the color right, too orange, not unlike a fra diavalo (oh god, think of Giacamo’s in Boston’s North End, ohhh) but it wasn’t that, it was just straight red sauce but I was lacking the right ingredients, you have to cook for yourself, for guests, there are expectations, but you’re short on ingredients, what do you need . . .), all those little tasks —

[Today's Update]

Where is it all going? Is it the next phase. To the next phase where I move on and explore non-living for a while. A euphemism that came up in a recent conversation with a friend, identities left unrevealed to protect those responsible. For irony, however, what a line. To capture the cheesy new-age perspective of always moving on, always learning, experiencing, flowing, being, receiving, and taking in. To open one’s spirit to the greater spirit of the universe. All peace, no fear. Hm. The new age angle combined with that use of euphemism that attempts to push the real out to the periphery of meaning, to keep us from knowing exactly what is happening or what will happen. The latter being absolutely essential. You could be fully paralyzed from the waist down, no, rather, There is a low likelihood you could experience some partial neurasthesia . . . that’s the kind of line we like given to us. What exactly is a “low” “likelihood”? So is that it, my teleology of exploring the non-life experience? Dark enough. Dark enough?

There is a question that hangs in my mind. Have I been tired out for several days in a row because of a few consecutive strenuous days last week? Does carry some other ominous meaning? Where am I now? Do I make too much of this? Do I censor all this to make it more palatable? Keep people entertained with the little ups and downs that make this a romantic narrative, in the technical sense, a hero quest — me versus the beast, my trusty sword, a bog or swamp or dark forest, and superhuman strength against an inhuman but anthropomorphized creature that eats me alive. Romantic tales end well, we want this to end well, we want to avoid tragedy regardless of how badly we come to need catharsis. No matter how badly some of us need catharsis.

In about two weeks I go in and get restaged once again, the disease gets restaged, and I just lie there, waiting. A few days for the doctor to review the material, look through the pictures, and draw conclusions. Progressive, stable, regressive. Either way it will be news. There will be something new to report. Food for the masses. Food for thought.

Tomorrow is chemo, again. On October 12 I do my next set of CT scans, the restaging, I meet with Dr. Whiting on the 16th and we discuss, in a very philosophical tone, what is to be done. Still haven’t moved yet, perhaps on the 13th. Locals prepare. My life’s worth of moving karma come back to me now. Bring me the good, the strong, the sweaty.

What do you tell your friends, your loved ones? Those closest to you? What do you tell your mother? There are days when you can still smile over the phone, then the odd time or two when the record skips, the lump in your throat, the torrent held there just behind the eyes that must wait, just long enough, just long enough to finish this conversation. Bring me the good and the strong.

10.03.06, Into October and the Terminal Window

2006-10-03T14:21:00.000-06:00

OK, today is the fourth day since my celiac process block, which is technically one day before the official "day of noticing anything." I notice things with my body all the time, as a result I think I might be oversensitive to changes and am going to withhold my thoughts on it for another day or two. In terms of side-effects or complications, I think I did experience some low blood pressure, some light headedness when getting up, etc.; and in the department of possibly diarrhea I was simply not worried. That kind of thing is usually my last concern, given that my near constant companion is constipation. Our theory, or hoped-for result, is this: the NCPB procedure is successful to some degree, that allows me to decrease how much pain medication I take, the decreased pain medication will allow my GI functions to function nicely and stop giving me such a hard time.

Today's Franky Scale, hm, to say 7 seems high, but I do feel better than yesterday or the day before, which were some kind of 6's. I'm taking life a little easier today; yesterday was one of those "let's got to campus and pretend that I still have a job and I still work on a regular basis and that I'm still productive..." — one of those kind of days. Funny thing is, I think several of us have days like that even without terminal illness! Ha. What a funny lot, humans.

As part of my mellow plan for today I have some more packing and cleaning up to do. The move to a new apartment has yet to take place — so no, friends, none of you local people I want to rope into this are off the hook, not by a long shot! — there are some strange issues of slowness the apt. manager needs to work out before we can do anything. (He has some efficiency deficiencies, & moving into an apartment two weeks later than scheduled is the price to pay.)

There are stories piling up, ALREADY, that have to do with the ridiculous and insensitive types who people the Multi-Level Marketing world. God damn, there is a real nut job who has been calling me and trying to impress me with how hard he's going to work at showing me "this is not about making a sale, man." And yes, he added the "man" on the end of that.

Ah. I almost forgot the title. The "Terminal Window" refers to the fact that now I'm at the six-month mark since my diagnosis not just of having pancreatic cancer but of its metastasizing and starting to eat the rest of my body. That was when I was told "On average, most patients with this die in 6 to 8 months." So here I am, standing on the 6-month precipice. Watching, waiting. Thinking some existentially centered blogs might be in the works somewhere in my brain.

10.01.06, More on Glyconutrients and Alternative Treatments

2006-10-01T18:29:00.000-06:00

Sunday here on the ranch. As far as updates from the NCPB procedure I’m not sure there’s a lot to report, since it was so minor I think there’s little to keep track of, except for possible complications. None of those, it seems. Whether it was successful is also hard to say at this point since Dr. Saunders says it usually takes at least 5 days to “kick in.” The deadening of nerves to kick in is an odd turn of phrase. But I wait for the kicking in of nothingness, no more pain feelings fingers crossed I hope. We shall see.

Today’s post is mostly boring and treatment related, details for the info junkies or the concerned. Not much psychological investigation, nothing very profound, although a choice described about one new treatment option that might “give hope” to some (there’s a little cheese for you ☺).

Glyconutrients & the Great Open Mind.
I wanted to also give an update about continuing treatment/s and what I’m doing about the cancer. Right now, I’m in the second round of my second type of chemo treatments, the TGX as opposed to GTX approach. This, too, is too early to report on, though I will have my restaging on around the 17th of this month and new CT scans will tell how the various tumors are doing. Poorly we hope.

Also, I’ve been doing more checking and soliciting of what I think are qualified opinions and I think I’m going to try out this glyconutrient “treatment.” It’s something to run by Dr. Whiting, but I since there aren’t known drawbacks it should be a viable option. The fact that it’s distributed through an MLM, as I noted before, is less than ideal, but on the open-mind front I wanted to reassure the doubters that I don’t conflate the distributor and the product, so no worry there. The long and short of it is that their glyconutrient product, I believe sold through the company MannaTech or Manna Tech (sp?), is an extracted form of a carbohydrate called mannose, and some others added to it, from aloe vera. The claim is that our bodies don’t get enough of this anymore and by supplementing it our bodies are able to function at peak performance, fight disease more efficiently, and thus allow for other, actual drug treatments (since this one’s not a drug) to work better too. The company’s claims for success are, as you’d expect, as high as the sky.

Out of all the alternative approaches suggested to me this one stands alone, so far, in having some actual science behind it. No way to guarantee success with it, of course, but at least there are numerous studies saying that the science of it works, that in theory it might be a help. So it’s a nothing to lose — except some money — and possibly a lot to gain. I want to be cautious on the hopeful gains, for obvious reasons.

I realized today, too, as I was loading up my weekly pill box with the various drugs and supplements I’m taking, with Ms. K there watching the process, that I should clarify what kinds of things I’m taking. I do take lots of pills, but I think I might have given the impression that they are all actual drugs, mainstream pharmaceuticals, all prescription, anti-cancer, etc. Not so. K was even surprised a bit at the number of supplements involved. So that might be news to some of you. I only take a limited number of anti-cancer (chemo) drugs and the majority of the pills are supplements of various types (from fish oil, green tea extract, standard vitamins and minerals, etc.). I do try to keep my skepticism level high regarding all the suggestions I’m given, and I’m grateful for them to all who send them my way, it’s just that they all need to be researched, evaluated, and decided upon. In the end, I’m taking a fair amount of the non-prescribed, non-standard stuff — again the low risk and some potential return theory — and I hope this is comforting to some of you who have suggested alternatives I may not be following. The mind is more open than some may have suspected, is what I hope this indicates.

And a Franky Scale about 6 plus.

9.30.06, A Settling Process

2006-09-30T14:42:00.000-06:00

Just a quick check in for now, though I'll try to post more tonight. Today's Franky Scale is somewhere in the 6 range; and yesterday maybe fell into the 4 range at some point. Post general anaesthesia never feels great to me, although the procedure itself seemed much better than my last EUS/endoscopic ultrasound, less tearing up of my throat, now swallowing issues, or feeling like that epiglottis thingy in the back of my throat my actual come of and get swallowed. That last one when they took the biopsies was just shitty. So the post-procedure day was difficult with gut pain and the slow dying off of my celiac plexus, the gradual easing off of the local anaesthetic, and just fatigue from chemo left over. Today's a great improvement. For what it's worth.

9.29.06 Pre-Results of NCPB

2006-09-29T19:22:00.000-06:00

First result, I am alive. I survived the, granted, minor, procedure this morning, by which they were slipping a hose equipped with ultrasound and a fine aspirate (called this?) needle down my throat, found the celiac plexus, then loaded that sucker up with pure alcohol. In five to ten (5-10) days the nerves of the celiac plexus are supposed to wither up and suffer a neurolytic death right before my eyes. The hoped-for benefit being that the majority of my pain will drastically diminish or disappear. We wait and see on this.

Seventy-four percent of patients who undergo this procedure experience decreased pain, so the odds are good and so far I've demonstrated I'm one to beat the odds. At least, I should clarify, one to finagle my way into the small odds group. The unlikelies. So within ten days I should know that; and the other key number is fourteen (14) which is the outside number for feeling any relief. That is, if I feel no relief by the end of two weeks, we assume it didn't work and I can choose to try and do it again — I assume that one would be "free." Kind of a two-fer one deal.

Anyway, today I sleep a lot. Ate Indian food for lunch, during which Ted dropped by and inspected my well-being generally. It's been a while actually. Now I just kind of fritter around and re-examine all the physical feelings I'm having: more or less pain? is that new pain I'm feeling from the alcohol injection? is that feeling of tenderness from the hose shoved down my throat? Lots of such questions. It's become just part of life for me. The crazy set of thoughts I have, especially when compared to my thoughts "before cancer," is so wild.

"Before cancer," that's almost a good book title, or title for this period I'm no living through — though it's not very accurate, so we have a problem there. I am still taking suggestions, btw, for any one interested, and I have the heretofore suggestions in a file stowed away, waiting to be dropped into the bottle before the ship is sucked into the whirlpool. For now, though, thoughts of dinner, and is that a new pain or from an old corner of my mattress?

9.28.06, Go in Fear...

2006-09-28T08:56:00.000-06:00

Go in fear of abstractions. Fine, just don't go in fear of chemotherapy. There are a lot of thing one's psychology can lead a person into, with smells, small pricks, extended stretches in an adjustable bed, and hospital eating, a lot on the down side, but we keep doing it every week. Today, too, chemotherapy and its joys. For all I know it might even be helping. Something we should learn in about two weeks when I do the next restaging with Dr. Whiting, the CT scan machine, and more bloodwork.

For today, just this, "hello," I won't give you a Franky Scale for today, I mean I'm about to swallow chemo drugs and I havn't even had my fucking coffee. (think the 1970s commercial for 7-Eleven coffee where the guy is driving to work in a convertable and he has a wolf face to all his neighbors and other commuters, UNTIL he gets his coffee at Sev...) It's me too. But yesterday was 6 to 7, backing up and down to each number. Got higher with the day however. After the marathon of travel from JFK to SEA-TAC two days ago, fogettaboutit.

Clear Pile of Shit award today: (after I unconsciously plugged them too! Goddam it.) the winner is 7-Eleven for deciding to stop selling CITGO gas, from Venezuela. A gas we've come to love as the only kind you can buy in the US, that I know of, that isn't like putting blood money into your car. Shit. Shit. Shit. I feel this one. I am not happy with Sev today.

9.26.06, New York's All Right, If You Like Saxophones...

2006-09-26T07:54:00.000-06:00

Friday evening I arrive at JFK, meet the Disenchanted Princess, and am off to Long Island. There is the strange phenomenon of actually being able to sleep on planes now, and that’s the only unusual thing about my flight. Normal, sleepy, a single jump from Washington to New York.

As it turns out, this weekend was enchanted and surprises were in store. Saturday was to be a nice quiet night, just K and I going to dinner in the city and then to Birdland for Joe Lovano’s commemorative show on Coltrane’s 80th. K’s place is just an hour outside the city so we would probably just drive in, find one good parking spot, then use that as our HQ. Then K started asking how I’d feel about some additional plans for the city earlier on Sat, friends of hers, we could hang out, then change clothes there, go to dinner straightaway, about 6:30, etc., but lugging clothes, meeting new people (yes me being selfish about new people — candidly, it tires me out more that almost any other activity now), putting on my game face for so long, then the two of us having our night out, it began to swirl in advance. I knew I’d be too drained. And had been so looking forward to this show, and heading back to this restaurant, the Shark Bar.

Finally she ‘fessed up: we had a room at the Iriqouis, on 44th two doors down from the Algonquian. Great! Actually less stress, now time to stroll parts of the city, have a coffee in Bryant Park by the big public library branch. Ahh. Ms. K, however, continued to act strange, still, having said something to the bell boy under her breath, and that she wouldn’t relay to me! Sneaky, sneaky, sneaky. Going to our room, next, the bell boy opened the wrong room, some woman is lying in bed in there — now mortified! “Where the hell is our room? What is up, man?!” is what’s going through my head. This place seemed really nice, I didn’t get it, why the screw ups. Finally we’re in our room, but he’s got keys for the blond-in-her-bed’s room, so we’re out of luck. “I’ll be right back up with your room keys,” he says, still taking the tip that’s begrudgingly slipping from my hand, a question mark still in my eye.

Ten minutes later. There is a knock, they keys of course, so I go over and open the door. Holy shit! Who do I see but St. Francis, the blond from the bed, and some guy who's a cross between Frank O'Hara/James Bond pulling up the rear (turns out to be an old childhood friend of Frank’s, A.C. — just like in the O.J. chase). The hallways spins. What’s happening? The secret mumblings from K should’ve been the give away, but I didn’t want to be a schmuck and pry or demand to know a non-event. Then the knock from Frank killed me, he and 34DD giggling like kids, me stunned stupid and speechless, and all of it accentuated by A.C. since we’d never met before, & I’m in my shirtsleeves, as they say, etc. The dials on are the Franky Scale began to spin confusedly, reading out a series of “6” “4” “7” and “8” then “1’s” and “10’s” randomly. That is a pretty damn good surprise to pull off 3500 miles from home.

So it began. We talked, hung out a bit, took a fiver, got dressed, prepped a bit more in our rooms — then off! The Lovano show was excellent, and I think I’ll include a quick show review later for the music nerds out there. Lovano’s totally solid on the tenor, seems to work at channeling Coltrane, in his own way, and does succeed in recreating some of the same moves, transitions, and little licks. The double bass play, though, was incredible.

With that kind of night how could your Franky Scale be lower than an 8?

One realization struck me during the show, something I tried to pass on to everyone that night, but there seemed to be something untimely about it. At a few points in the show Lovano let the basses loose and the senior player Henry Grimes would let off into a game of follow the leader, so each instrument was in part echoing the other, throwing back to it additional riffs, turns, and interpretations. It’s hard to explain, but a phenomenal moment. And what I thought to myself was that such a musical moment is a place you could intentionally get lost, a place where all concern could fade away, a place to find yourself at the last and lonely instance. Despite its reality, that last instance isn’t popular parlor talk, so in our rooms after the show we kept it light, discussed the relative effectiveness of creating ichthyological metaphors to explain human uniqueness and beauty. Keep that word “relative” in mind.

* * *
P.S. — I don't know if I posted this info before but I upped my NCPB procedure date to the 29th, in the morning. It had been Oct. 2 but this way it'll be done right before moving, I'll have better company, and possibly the pain relief will come a few days sooner. So, Sept. 29, another endoscopic ultrasound procedure.

9.22.06, Return to the Sopranos

2006-09-22T20:01:00.000-06:00

I've arrived safe and sound, back on the East coast for a few days, for Coltrane's 80th birthday, time in the city, and to see if I can't find a disenchanted princess in the woods of Long Island. All the travel today went off very smoothly, not extra liquids or questionables in my carry on. The Port-o-Cath did not set off any alarms. (It has only done that at one airport, actually, where was it? JFK...from Seattle once? Can't recall.) Today was safe.

Reporting a Franky Scale on a travel day is pretty strange, it was quite high during my naps on the plane, dipped at other times, but really things have been pretty good today, especially for day one after IV chemo. Before the cancer life began I would rarely if ever sleep on planes, just couldn't do it. Now, I get on the plane and the engines are like a lullaby. The plane moves and I'm out. Today, too, same deal. OK, enough travel agent talk. Time to rest up for Joe Lovano tomorrow.

[P.S.] And after catching up on some of the season six Sopranos, I just have to say there is some strange directing going on, around episodes 5-7 or so. I'm partially on the edge of my seat, partially just going "That's it?" More to come.

9.21.06, To Depart

2006-09-21T22:12:00.000-06:00

IV chemo today, a joy as always, but thanks to Mme X for company. Franky Scale maybe 6ish, the usual fatigue and the trivial works. Then I'm getting myself ready for tomorrow's trip. Since I'll be gone for a few days I'm not sure how much blogging I'll be able to do, but surely there will be something to write about once I return. This is the first travelling I'm doing in the middle of chemo treatments, which might make things interesting, and I plan to take it slow as much as possible. If there are any newsworthy events I'll be sure to post. And if you don't hear, assume the Franky Scale stays in the 6 or 7 range.

9.20.06, Something like 21 Grams

2006-09-20T23:08:00.000-06:00

Is there something that I’m learning? Yesterday’s “Anonymous” (to yesterday’s post) commenter pointed out that I’m doing something along the lines of passing along information, teaching as it were, perhaps from my unconscious somewhere. Teaching without even knowing it. Something about “how to live,” that’s what is was. The without knowing it part I agree with. I was excited to see there might be a “life lesson” in there somewhere, so I had to have to go back to the last post and search it out. I write the blog and now I find myself in reader’s shoes. The ignorant preacher — if there were to be a preacher anywhere, he or she must be ignorant. Or else how could it work? There is no other way.

I’ve been watching 21 Grams this evening, without any foreknowledge, no idea of plot or theme, the stench of death all over the film somewhat of a kick to the head. One’s gone, one’s gone. To watch this film and think “Me. It’s me in a number of weeks or months. Part of it is me.” Except the cigarette jones. Who knows. It’s all allegory, but then like I was suggesting in the post on “Where Truth is to be Found” that’s the truest way to tell a real story. Truth in fiction being the only kind we can rely on. Truth in poetry. And then again . . . it breaks down at some point.

So I’m trying to figure out what it is that’s being taught here, by accident, from this other side of my personality that writes in the blog. Reader’s shoes. Where is the truth there? What are the stories being told? More scattered thinking from the blogging me.

And today, how has it gone? Harsh, actually. After feeling good for a few days, and mildly living with the background fear that it’ll be jinxed, today I woke up in a very different physical state. Not feeling so good. —how to explain this without seeming pitiful, without appearing pitiful, without being unduly, something, about it. What would be the word. Too much of something that will kill the writing. So the day begins on the low side, and then where does it go from there?

Eventually today I started feeling angry about it — there is it. Anger, that natural emotion we are supposed to feel in the process of it all, what is supposed to help get us out of the funk. Me and my natural funk. To be expected, right. It’s in all the books, after all. But the extra pain eventually just became so tedious, today anyway, what was I going to do about it? I took extra pain meds to try and get a handle on it. Think of those raised eyebrows. Eventually it cut down to a more reasonable level, to get me off the bed, off my side, from waiting for something better. Get back into a manageable level of life, then go from there. Just one step forward.

What was curious is how the pain meds cut down the pain to a certain degree, not to the point of elimination, but rather to a heightened sense of where I was, where I am. And this is what got me pissed off. They cut the pain just enough for anger to take hold. I started off just angry about being in pain, about it, the pain, about it not being obedient. It doesn’t listen to me. It’s obdurate. And then the sense spread to larger issues that touch this entire experience. To what I’m doing every day, to facing the same challenges daily. I suppose even the questions that have been slinking around the shadows — the nasty ones without answers like “Why has this happened?” and “How is this supposed to play out?” I’ve known from the start, intellectually at least, that there is no point to it, that these are dead end issues. There is no water in that well. So why even lower the bucket?

I don’t intend to rant. Another well with no water. But I did just want to put out the questions, to say what it is that’s happening, and not to garnish it so that it looks more appealing. Today wasn’t even that much worse than a lot of days, it’s just another one in the deranged series I’ve been assigned. Perhaps the anger is good for me, perhaps it’s another source of strength, perhaps there are, forgive the triteness, lessons to be learned in this too. Shit. It’s all fucked up beyond expression, from the perspective of my little world at least. So here it is, raw blogging, saying the things that might cause concern, saying what’s really going on despite how personal it is, despite what it means to walk through life in this strange state of plurality. The me who wakes up in a singular state of physicality each morning, the different mes who blog and pick what to share, the me who needs to stand up as straight as possible, who walks to the store, the disconnected mes and the mes who are inextricably tied.

I don’t know.

9.19.06, Epistrophy

2006-09-19T22:40:00.000-06:00

I thought I'd call it "epiphany" but that seemed too pedestrian on the one hand and just too much on the other. It might not even be a legit revelatory moment into the bargain. Something about "epistrophy," the sound and sight of it, which apart from a Monk which is all I know of it, seems to fit. For the past few days I've felt generally solid, or even good . . . though some superstitious hidden part of my unsuperstitious self tells me to watch such words for jinxing . . . but feeling good. No real problems, some moments of real clarity where I almost forget, or actually do forget for just so long. A great thing — yet it emphasizes upon my mental return that question Frank asked once, so long ago it seems, about how long it takes me every morning before The Thought arrives. But, generally good, that's my point.

So here's the story. It's not a continuation of the talk about truth content (last two days) because this is something that's crept up on me today until it feels like it needs to come out. I've been catching myself having thoughts about "what it's all about" again, about the "big picture," and all the related annoying and existentially servile little questions that accompany one who spends too much time thinking of how it all should make sense. As in, "what's the meaning of life?", for example, would be the most common example; and existential angst would be the most familiar descriptor. It's as if I've found myself in a mental state that I spent altogether too much time in prior to diagnosis and Life Change and all that.

The twist, after a couple of days of such thinking, is this: if thoughts about "what it's all about" are creeping back into my brain, even after all the big realizations of Dumb Fate and Death and Nowness seemed to have set, then wouldn't that possibly be a sign of getting better? If I were to forget some of what I've been learning recently, if I were to slip into my "old ways" (yes, self-consciously deprecating or imprecating there), then maybe that's a sign I'm going in reverse physiologically too . . . ? Crazy, right? A reverse in my thinking habits means a reverse in my physical condition. Probably so.

The logic of it, however, seemed appealing to me at the time. (Does the logic even make any sense to anybody else, or is this just me here in my imaginary closet thinking too loudly?) A turn for the better is all I'm hoping for here, and this is just a potential mental framework to explain it without miracles. The premonition of good fortune without miracles. Or did I secretly, or rather, unconsciously, figure it out before and then start to feel the good-old angst again? Hmm. I ought to simply be glad there have been a few days where the pain is less and most of my body seems to be cooperating. That's all. And I'm about to head to New York for a quick trip in three days, so feeling good and resting up are what the doctor ordered. Good company, good food, good music, and pray no fatigue.

Curious that word-notion, "prayer." It seems to be happening all around me, though in forms that would surprise many who think they've got the low down on prayer. I see it take myriad forms, different incarnations and different practices, dissimilar executions. I'm glad for all of it, from whatever corner.

The Franky Scale then? You know "before" I was sick, or before it got this bad, I never or rarely had days I would say were much over a "7" or maybe "8" so I'm still wary about using the big numbers. But I'll say a solid seven/7, a 7 with plus. Now if sleep will be kind enough to not elude me, the day will close well.

9.18.06, A Brief Pause in Truth

2006-09-18T21:55:00.000-06:00

On the Franky Scale today I probably logged a 6, feeling a moment or two behind myself all day long. There were a few moments, too, when I imagined feeling nauseated — and there is no reason for nausea right now unless it's purely psychosomatic and stems from the fact that chemo starts up again this Thursday. Anticipatory nausea. It's very odd to have the feeling and then almost simultaneously realize what it's about, that my mind produced it so perhaps my mind can eliminate it, and so on. And so I tried working that through. Too early to feel sick, ruins the good days. Otherwise there's little going on physically.

I did decide to try and step up my NCPB procedure, into the last few days of September, but no word yet. Ideally I'll be able to do it on the 27th or 29th, but it looks like I won't know until the scheduler returns tomorrow. It's such a low-risk procedure that I don't feel nervous about any danger. Still it gives me butterflies in anticipation when I wonder about its potential for success. It could be such a boon to have a significant portion of my pain just zipped away, so I quietly go around with my fingers crossed.

As for finishing yesterday's absolutely fascinating post, I'm going to take a cheap way out and only put up one additional paragraph. What follows after that still needs work, especially to be able to explain the notion of the "truth content" of a work of art — as with so many complex ideas, being able to convey it in the simplest possible form is incrdibly demanding. It's an idea I've learned and had kicking around in my head for ten years probably and yet I don't think I've ever really tried to put into very simple terms. Looking at the blank page and knowing that my simple explanation needs to be put down is proving daunting. Thus the fragmented bits and pieces approach to this whole thing. Think of it as a deep thought for the day, just one paragraph so thrilling it might well help you doze off tonight if you see it. With that, it's pasted in below. Till tomorrow.

* * *

Negative aesthetics, then, is the workings and the study of it all not from the point of positivist assertion but from negative critique. Alluded to yesterday. Simply put, the “negative” here is not bad, harmful, or unproductive in the slightest; it’s salutary, good for thinking, open-ended, creative, and tends toward the greatest degree of transparency possible. It’s a type of demystification in the arts, or demythologizing as Weber or Durkheim put talking about Modernity. We progressively shatter the myths and direct claims to truth. The point is not to study and learn “what is beautiful” according to the model of traditional aesthetics, rather it is to understand why a given artwork succeeds or doesn’t, how much truth content it has, and to do that we have to ask questions about historical context, political motivation (qui bono?), economic weight, and ethical value. Most theorists of aesthetics — take Kant as prime example — say that all this is unrelated to beauty, to the sublime, and therefore it must all be ignored and cut out. We're supposed to read a poem or look at a painting in some state of perfect remove, devoid of any personal interest, truly not caring, not being concerned with anything that could be at stake. As a remedy, negative aesthetics works to read all works of art while at the same time remembering how we view the world through a camera obscura. It’s all upside down, inverted, skewed, Alice-and-looking-glass-ed. A methodology, if you will, for getting at the truth content of a work of art.

[again, to be continued]