Life: The Crash Course Version

[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