Sunday, December 13, 2009
CHEMOTHERAPY: STRAIGHT-UP, NO CHASER
Sunday, December 13, 2009
IN LOVING MEMORY
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?
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.
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
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"
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