(NB: this is an essay I wrote several years ago trying to explain to people about the trials I went through during my treatment for cancer. I felt it germane to share here. Please excuse the dates...the story is more important...)
I.
Death’s Dream Kingdom
Let me be no nearer
In death's dream kingdom
Let me also wear
Such deliberate disguises
Rat's coat, crowskin, crossed staves
In a field
Behaving as the wind behaves
No nearer -
Not that final meeting
In the twilight kingdom.
The Hollow Men
Thomas Stearns Eliot
This may well be the last time I tell this story…I had told myself that I wouldn’t talk about it any more. But today is one of those once in a lifetime days, and I want to mark it in this way. Some of you know this story; some of you do not. Those of you who do know, bear with it, OK?
May 15 2000 is a day that will always be emblazoned in my memory. For one thing, that was the day my local record store was able to finally get in a copy of King Crimson’s The ConstruKCtion of Light album for me. More importantly, that was the day that doctors at Hunterdon Medical Center told me that I had cancer.
Non-Hodgkin’s Lymphoma is typically a very treatable cancer…not quite as much so as Hodgkin’s Disease, of course, but cure rates are generally very high. It responds well to traditional chemotherapy (which for NHL is cytoxin/vincristine/adriamycin with a prednisone chaser) and radiation…6 cycles of chemo, spaced 2 weeks apart (if memory serves), followed by 35 to 40 sessions of radiation. Boom, you’re done, come back in 3/6/12 months as indicated. You’re done, and you’re a survivor.
My NHL decided part way through to become a bit more atypical, and started growing again through the chemo. I’m told this happens, and they have a secondary regimen of chemo for cases like mine called ESHAP (for etoposide, methylprednisolone (solumedrol), high-dose cytarabine (ara-C) and cisplatin). It’s high-level, high-dose, meaning you get the meds 24 hours a day for 6 days straight. They usually like to keep you there an extra day following the regimen, I always was stubborn and demanded to be discharged, and always was back in the hospital a day later with fevers and vomiting.
What can I say? I’m a slow learner.
This was followed by radiation and near constant CT scans, all of which showed a tumor deciding to thumb its nose at the world. Literally, I think if it could have flipped the bird, it would have. The doctors tried additional regimens of Rituximab (rituxan), which is a monoclonar antibody that latches on to certain proteins found in cancer cells. I was told pretty much straight out they didn’t have much hope for this working as the traditional therapies didn’t seem to want to do their job, but it was worth a go.
It didn’t work.
Through all of this I was getting weekly blood counts done, getting procrit and neupagen shots to boost my red and white counts (I was seriously aenemic and lymphopenic, conditions that continue to a more limited degree today), and trying to work a full time job, because I thought that was what you did. You carried on trying to live.
I was sat down one day in a conference room with my oncologist who laid everything out to me. The tumor wasn’t responding, it was not shrinking, it was still active, and I had 2 real choices:
1) I could have a stem cell transplant
2) I could stop treatment
The third option would have been clinical study, but I wouldn’t qualify for that without doing the transplant.
You know that phrase, ‘I didn’t have anything to lose?’
Well, frankly, it’s bullshit.
The phrase really is ‘I really didn’t have a choice.’
II.
Fear in a Handful of Dust
What are the roots that clutch, what branches grow
Out of this stony rubbish? Son of man,
You cannot say, or guess, for you know only
A heap of broken images, where the sun beats,
And the dead tree gives no shelter, the cricket no relief,
And the dry stone no sound of water. Only
There is shadow under this red rock,
(Come in under the shadow of this red rock),
And I will show you something different from either
Your shadow at morning striding behind you
Or your shadow at evening rising to meet you;
I will show you fear in a handful of dust.
The Waste Land,
Thomas Stearns Eliot
Stem cell transplants are like…if you haven’t had one, you really don’t know. And that sounds so pompous, but it’s true. It’s one of the scariest things I can possibly imagine, and if I were allowed to get all metaphysical for just a moment (you’ll allow me that, won’t you?)…
Being in the Transplant Unit is like sitting at the gate between Purgatory and the Underworld. You ultimately have a choice…you can try to walk away, or you can be pushed in. The emphasis is on try, because despite the fact that you’re bedridden, you have to work. You have to fight. You have less than zero energy, you have no immune system, and still you have to keep breathing, sometimes almost willing yourself to do it. You’re given enough chemotherapy to kill off your bone marrow and the tumor…enough chemo to kill a person…and then given a few days to recover from that. Then they pump you full of cells they harvested from your own body…
…and let me interrupt the narrative there. Stem cells come from your bone marrow, mostly. But to get the numbers needed for a transplant, they have to force the cells into an easier to harvest place…like your bloodstream. So you get pumped full of neupagen, which forces your narrow to make white cells and stem cells…so many that your bone marrow gets packed and the cells are forced out into your bloodstream. Your active bone marrow is concentrated in your thigh bones, your hips, your sternum, your facial bones. And they’re super packed. Massive bone ache. Imagine the achiness you have when you have the flu, and multiply it by dozens of factors of 10. The pain got so bad one day I called my dad and asked him if he had anything stronger than Tylenol I could take. He told me to come up to his place…it took me nearly an hour to walk from my apartment door to my car, it hurt so much to walk…
Aside done, narrative continues.
They pump you full of those cells, and hope you don’t die from the shock to your system.
Then you wait.
The first few days after transplant are the worst. You have 0 white blood cells. Your platelet counts are zero. Your red counts are uber low. You can’t get up to take a shower, because if you cut yourself or fall you’ll bleed out before the doctors can get to you. Your food, if you have the energy to eat, is mush. You lose your hair for the third time (the doctors came in one day and said they were amazed I still had hair. I turned to them, stone faced, and started pulling it out clump by clump). You get anti-anxiety meds on request. Occasionally (it happened three times while I was there…there were 8 beds in the unit) a nurse comes by, closes all the shades on your windows and doors, and sits with you for 10 or 15 minutes.
I don’t suppose I have to explain why.
Thankfully my doctor was a Yankees fan, and when he was on site and off duty and there was a game on, he’d come in and sit with me and we’d talk Yankees. My other doctor was a big David Bowie fan, and so we talked music…he always had something to say about the Genesis and Yes music I had playing in my room. Most nights I either fell asleep out of sheer exhaustion, ativan-induced slumber, or by crying myself to sleep. Quite often the nurses would come in and sit with me…I guess they saw that a lot. And they were always amazingly good to me…if I wanted lemon ice or something, I’d find a tray with a dozen cups of it on it for me.
I had a computer there, because I knew I was going to have all the time in the world to play Diablo II and stuff…it barely got used, because half the time by the time I got up in a sitting position, I was wiped out for the day. I had brought a book about PC hardware with me…a huge, 1200 page hardcover, and the doctors and nurses looked at me like I was nuts. I told them I’d read it all while I was there. I maybe got 5 pages read.
I watched a lot of black and white TV.
I didn’t do a whole lot else. I wasn’t able to do a whole lot else.
III.
There Will be Time
And indeed there will be time
To wonder, “Do I dare?” and, “Do I dare?”
Time to turn back and descend the stair,
With a bald spot in the middle of my hair—
[They will say: “How his hair is growing thin!”]
My morning coat, my collar mounting firmly to the chin,
My necktie rich and modest, but asserted by a simple pin—
[They will say: “But how his arms and legs are thin!”]
Do I dare
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.
The Love Song of J. Alfred Prufrock,
Thomas Stearns Eliot
Today is July 16 2011.
I was admitted to the Robert Wood Johnson University Medical Center Bone Marrow Transplant Unit on July 16 2001. Therefore, today marks 10 years to the day that I began the end of my treatment for Non-Hodgkin’s Lymphoma.
A lot has happened since then. I went to my first concert after treatment on September 6 2011…Yes at the PNC Bank Arts Center. Two days later, I saw the Flower Kings at the George Street Playhouse in New Brunswick NJ. 3 days after that, I sat in my living room as I watched other, more monumental changes happen. I’ve lived in two different places since then. I’ve grown my hair back out, cut it all back off (which prompted no end of fearful comments from people at NEARfest who knew me and my story…‘Please tell me you’re OK!’). My hair is growing thinner…and grey. My energy levels are not what they once were. I get tired easily. I get sick more easily, and getting sick lingers. I’m contemplative a lot more than I once was. There have been long term lingering effects beyond these…I am sure, despite my genetic predisposition toward them, that my cardiac issues have not one bit been aided by the stresses my body was put through during treatment.
At the same time…
There is time.
Time for me to try and find myself again, wherever (and whoever) I may be. There’s time to connect to people I thought long lost. There’s time to continue whatever journey I am here to travel. There’s time for decisions, and revisions to those decisions. There are moments…some as small as watching a bird fly by, some far more grand than that, in which I find some degree of comfort, of being. There were times through all of this I could have stopped, laid down, and said ‘This is where I end this. I won’t go further.’ And I’m not at all ashamed to admit that there were countless times I thought that would be the right decision, for myself and for others.
But I carried on.
If you’ve read this far, I give you a massive amount of credit…and I’ve also added you to my ‘potential stalker list.’ (I’m kidding about the list.) (Maybe.) This will probably be the final time I talk about my fight with cancer, but I thought of all times, marking the tenth anniversary of the final phase beginning was as appropriate a time as any to mark this point in the journey.
Chuck Palahniuk (hurrah, I learned how to spell his name!) said in his 1999 novel Invisible Monsters, ‘Nothing of me is original. I am the combined effort of everybody I've ever known.’ If you are reading this, then in some way you have been part of the process of remaking me. The me I am today is not the same person who walked into that transplant unit in 2001, nor am I the same person who was diagnosed 15 months previous. I mean that in a biological sense as well as a metaphysical sense; all the cells in my body have been replaced dozens of times. But in a metaphysical sense, I am not the same person either…and each of you has had a hand in molding the person I am now. What I write here is as much for you as it is for me.
I thank each and every one for you for what you have brought to my life…whether it is as small as a smile, or as large as saving me from myself. You’ve made me, and did so with far more skill than I could have mustered on my own.
Do I dare?
I’ve decided that the answer to that question is ‘Yes.’
Shantih shantih shantih.
No comments:
Post a Comment