Friday, February 02, 2007

Nothing but a dream ...

I've taken great pleasure in not posting a health update since November.
I've taken even greater pleasure in sharing my photos and miscellaneous thoughts instead.

Since my last post on the subject, I had been in the midst of a concerted effort to avoid my doctors. I'm sick of the constant blood tests, the nerve-racking wait for results, the consultations, the cycles of optimism and despair, dealing with the goddamn health insurance company.

And then last week I thought that too much time had passed without at least checking in with my endocrinologist. In the end, my fears almost always win out.
I had a blood test today to check my serum calcium level and other metabolic markers as part of monitoring and treatment of my parathyroid cancer. This has been going on for more than five years.

I should learn the results sometime Monday. But through a deal with my doctors, I'll be called only if there's a significant change in my calcium level. And most importantly, at my request they won't tell me the exact numbers revealed in the test, because I'm sick of dealing with numbers and their often abstract meanings. Numbers don't represent how one feels physically or mentally. They're only data over which to get stressed out.

Before the blood test, we had a frank discussion about my health situation. My endocrinologist, a wonderfully compassionate woman of whom I'm very fond, told me quite simply that she doesn't know of a surgeon anywhere who would choose to operate on me. Even though I had a scan in mid-November that revealed a small, vivid tumor glowing like a nova inside my chest, to where the cancer has spread from my neck, she said my track record after five major surgeries of having this tissue cut out completely is quite poor. The chances of success are now slim to none, the experts agree, and the surgery, at least at this point, is more of a shock to my system than the disease.
In the community of surgeons familiar with my case -- and there are many, here and abroad -- I am an untouchable. Surgeons exist to cut, and my case no longer affords them that opportunity.

So, she and I discussed treatment options. She believes it's time we travel down some uncharted roads because conventional therapies and medications go only so far. We talked about an experimental gene therapy developed in England for parathyroid cancer. This cancer is extremely rare, so it's no surprise that the pool of human guinea pigs in Britain is extremely small.

My doctor believes the physicians involved are amenable to shipping the materials to the U.S., where just one person in a nation of 300 million is now undergoing the therapy.
I would be the second person.
Nothing is known of its long-term success rate or its immediate and long-term side effects. My doctor isn't even sure exactly how it would be administered. This treatment is on the cutting edge of the cutting edge.

Even though this gene therapy was mentioned only as a possibility, I need to prepare myself for the choice between risking it and possibly helping others as well as myself, or sparing myself the fuss and accepting the reality (as it stands now) that this disease ultimately conquers.

If there were a large enough group of patients treated with this therapy from whom results and risks could be extrapolated, it wouldn't be so bad. But it's hard to draw conculsions from one, perhaps two people in the U.S. and a handful elsewhere, and the doctors won't even try.

I'm on a medication, experimental until last spring, that is losing its effectiveness (at least in my case) in keeping a hold, however tenuous, on my calcium level. This spike in calcium level is what makes parathyroid cancer fatal. At any rate, I'm happy and even a bit proud that I was part of the small group of patients upon whom this medication was tried out and declared safe.

There are other, conventional medications that can be used to the same effect, at least temporarily. But the route of most promise leads toward experimental treatments. If my time turns out to be limited, do I want to risk being debilitated and thus prevented from enjoying it by some treatment that may not work and may even make things worse? On the other hand, it could succeed ...

When in doubt, whistle.

15 comments:

Jean said...

I'm glad to know you have a good doctor, of whom you're fond.

Your lucidity about all this does my heart good - in much the same way that your terrific photos do, really - and will lead you to the right decision for you, I'm sure.

Sending lots of love, and appreciation for what you share here.

east village idiot said...

Hi Michael.

Thank you for letting us know about your health situation. Please do not refrain from sharing updates with us. It's part of understanding and appreciating who you are, the words you choose and your beautiful photography and poetry.

A member of my family is fighting a rare and agressive form of cancer. Another two are dealing with AIDS and HIV. You and I are both the same age - shit happens.

I will keep you in my prayers and send mega healing vibes your way.
Take care, evi

Michael said...

Hello Jean, EVI,

My deepest thanks to both of you for hanging on for the ride with me. Your support and the support of all my friends means a lot to me.

Matt Kohai said...

Hey, Michael,

Good luck, and no matter how much time you have, make the most of it.

"When you've got something special, never forget it." - Chinese proverb

Hey, how about a non-health update - like those chess lessons you were taking?

Michael said...

Chess lessons stopped months ago. So sorry to disappoint you.

stranger said...

Michael,
"If you think you can, you can...!!!"
You are my hero!!!

Michael said...

Thanks, Stranger! I'm scared shitless. I don't think the "hero" label fits, but I know where your thoughts are coming from, and I thank you for them.

I hope we can get together soon before your big trip!

stranger said...

A lot of times, it's the patients who fight for life, doctors only provide their assistance...Doctors always give their "designated life results" to their patients, but you always hear some happy ending stories, expecially in the cancer case, because doctors have not solve all mysteries in this field...

MikeDoe said...

It always comes down to the question of how you want to live the life you have. I've no idea what that might be like and have no idea what would be a good way forward.

Is hope something that you could live with?

Jordan & The Tortoise said...

Michael,
Every hero I have ever known was scared.

You are a hero. Persevere brightly!
Jordan

Michael said...

Hey Jordan,

Fuck being a hero. I just want all this to be resolved one way or another. And it shall be.

I've been following what you've written on other people's blogs for some time now, and I enjoy the "voice" you bring to the discussions. I appreciate your point of view. And I especially appreciate that your experience of being in harm's way -- and being responsible for other people similarly situated -- has informed that point of view.

MikeDoe,

I have no idea what you're driving at. Suffice it to say that without hope I would've given up a long time ago.
As for finding a way forward, I believe (most of the time) in what Joseph Conrad wrote: We live as we dream. Alone.

Kozy said...

Michael-san, I took much time to read this blog, because it was very difficult for me to understand.
I'm sorry I don't know what kind of words are good for you.
I just hope you don't lose your hope of cure.
Douzo Odaijini.

Michael said...

Hi Kozy-san,

*Itsumo* arigatou gozaimashita...

Jordan & The Tortoise said...

Michael,

"Fuck being a hero. I just want all this to be resolved one way or another. And it shall be."

Exactly like that.

I have known a few we call the phony tough and crazy brave who are the first ones to freeze up in a bad situation. It is the ordinary guy in extraordinary situations that I am so often impressed by.


Thank you

Michael said...

Thanks back atcha, Jordan. I take a lot of comfort in the knowledge that we're all in this shitstorm together, on one level or another.