Wednesday, October 04, 2006

10.04.06 A Little Walk in the Dark

[Two Days Ago]

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

[Today's Update]

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

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

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

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

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


Anonymous said...

I don't know if I'm good or strong, but I'll be there on moving day.

Anonymous said...

This is your blog, my friend, not ours. That being said, it must really make no sense for me to then demand no self-censorship, that you use this as a theraputic diary as much as a public service or general update to friends/family/coworkers/creditors/etc...I care about you, so provide us with what is real, the facts, as harsh as they may be, not some sugar coated sweetness...unless, of course, since its your blog, its what you'd prefer to do, saving more painful thoughts for other media...

I trust I've been clear.

Slarry said...

Wednesday October 24, 2006

“Suffering and joy teach us, if we allow them, how to make the leap of empathy, which transports us into the soul and heart of another person. ln those transparent moments we know other people's joys and sorrows, and we care about their concerns as if they were our own.”

Dear Scott:

After a brief moment of wiping the tears from my eyes while reading your blog:
“A LITTLE WALK IN THE DARK,” reminding me once again of the pain, the total
inconvenience that your disease puts you through. That it is ongoing and prevalent
and that the little things that so many of us
take for granted, don’t even give a second thought to--- of our ability to cook, enjoy a good nights sleep, of walking to and from the grocery store or bank --- all without becoming fatigued and in pain it puts life and time in perspective.
More, doing these “little things,” without having to feel pain, become exhausted or cause one to question the meaning and quality of our life. These little things, take on a whole new meaning. They are HUGE. That life; our health, is a gift and should never be taken for granted.

And now you are preparing for another round of Chemo.

Please know, dear brother, that I view you as one of the strongest people I know or have ever met. That your sheer will and determination to continue to fight against this senseless
disease, inspires me and countless others, if we are listening--- to learn yet another life lesson. And so the trivial, the mundane, immediately fall away. And instead, hopefully, are replaced with gratitude and empathy.

I hate cancer. I hate, hate, hate it. And yours in particular seems especially grueling,
mean spirited and invasive. There are times when I still think-- “how could Scott possibly have this, where did it come from .. ? And it angers and saddens me to a point that is indescribable. A dark, ominous feeling that I have never felt before. Yet I know my thinking like this, is of no use to you. And so I buck up as best I can, to assist in your fight for a modicum of normalcy and peace and especially, freedom from pain.

This is some of what I have learned--- even as each new day brings you a new pain and robs you of your quality of life, thus breaking my heart a little more because of the love I have for you, I make a commitment to attempt and want to take that “leap of empathy” more than anything. To help you fight this cruel, ill mannered cancer that is trying to rob you from me and others. And rob you of your beautiful life and mind. I want to kick it in the teeth, smash it to bits, even while I’m asking “Why .. how can this be .. ? “

A little over a month ago I bought a neckless with a sterling silver DOG TAG that contains one word, one name: SCOTT. Not is some pre morbid, pre memorial way. I wear it every day to give me strength and in honor of my brother and his strength. I hold it close, tighter to my heart on chemo days or any day or time I feel I am weakening in my fighting with and for you--- fighting against this disease. Hoping at times, that somehow it soars from Salt Lake and finds its way to you. My hope, my comfort, my support. It brings me comfort and helps sustain me.

More, it reminds me, during the times in my life when I allow the trivial to bother me,
throw me off center--- that what I struggle with, is nothing compared to what you are going through.

So, again, this being a Thursday, a Chemo day--- you will find me holding my neckless tightly and more frequently--- willing and hoping that you will be in less pain, that things will go smoothly.

And as you stand at this precipice, this six month edge, please know that there are countless hands and people willing and wanting to catch you if you fall or need to be lifted up. You are so loved. Do you know that?

The circle of your community of friends is huge, genuine and authentic. You deserve that,
because you are and always have been kind, unselfish, genuine and authentic. Even and maybe even because of your raw honesty--- we all look to you as a teacher, you with your beautiful mind, your strength and your ability to express yourself and feelings to the point that it permeates my soul and heart. I would be so much less of a person
without all that I have learned from you. All that you have and continue to graciously teach me. My fear-- that I haven’t given enough for you.

But know this, you are beating this. You have passed your your six month hurdle.
I know it hasn’t been easy. You have had to fight for it everyday. So my wish for you today, is peace and reassurance -- that you still have many days and moments to live, enjoy and continue to teach us. Linger around for all of us to enjoy.

I love you my brother. With my DOG TAGS it makes me feel like I am in Scott’s Army--
one your flock of warriors, friends and loved ones--- and we are here for you and will continue to fight and rage with you.

But for today-- peace, a bran muffin, pho soup and good rest.

Grateful as always to be your sister--


tossing salads said...

i couldnt respond earlier cuz as always i was late to work. but none the less, i was so thinking of you. every patient im with i think of you scott. each patient who enters my life teaches me something. my wish, my desire is to be of service, to give them just a brief respite from this fucking cancer. some young some old. but all teach me. this last blog brought some tears to my eyes early (530) this morning. i HATE this is not strong enough. it robs us of people who can teach, enrich others lives. i think of you each and every time i touch one of my patients. i think how can i be of service, what can i do to ease there suffereing. and i know that it is still not enough for the fight they are waging. i was thinking of you today as always. not a day passes that i dont think of you and dan. so much to give, so much to learn. hope you are having some joy now. that is my wish. i love you scott.