Saturday, December 19, 2009

With Gratitude and Thanks: Scott's Beloveds

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.












Sunday, December 13, 2009

CHEMOTHERAPY: STRAIGHT-UP, NO CHASER










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

Thursday, October 08, 2009

He Went Not Gently: The Daily Transit




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

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

Thursday, September 10, 2009

A Political Interruption Revisited: Political Cancer







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

Wednesday, August 12, 2009

Cancer, Coffee and 'What defines A Life?'


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

Wednesday, June 10, 2009

STAND UP TO CANCER - It Sucks










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.

Friday, June 05, 2009

Not Cancer But It Still Kills

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

Thursday, June 04, 2009

Cancer Survivor Manifesto by Donna Trussell

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

Friday, April 17, 2009

Dante's Inferno and The Overwhelming Question





"...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]


Sunday, March 29, 2009

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

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