I’ve got this deal going – in my head anyway – with the Three Fates. The Greeks called them Clotho, Lachesis and Atropos, and they spin out, measure, and in the end cut the thread of our lives. We are literally in their hands.

My deal is, I get to stay alive for some unspecified number of moments after the liver cancer and transplant. I get to be conscious, occasionally functional, and once in a while I even get to thrive. I also get to experience each and every sensation of a body running down its weave.

I’ve started and not finished a dozen posts on my health trials of the past year. One did refer to my struggle last summer just to learn that I’ve comedown two impossible–for-a-transplantee autoimmune diseases, but that’s it. I feel guilt for not having posted more. Continue Reading »

I finally got my H1N1 shot today at a big inject-a-thon held in San Francisco’s Bill Graham auditorium. Out front, mimicking event volunteers right down to their day-glo vests and friendly manners, the anti-vaccine, it’s-a-government-big-pharma conspiracy! folks were greeting everyone, handing out official-looking yellow papers. Reading this you found not info on what to do to get your shot, not the who-gets-what-and-why of vaccinating, but furtively hinted-at, semi-argued, conflicting pleas to avoid this vaccine – all vaccines! – at all costs. Especially if you want to “Save The Children”.

I stuffed the thing in my pocket and went in.

After rolling up my sleeve and getting the poke, I dug out the crumpled paper, went up to one of the anti-vaccine guys and tapped him on the shoulder. He turned around. I silently held out the crumpled paper and stood there. Staring at me quizzically, he finally extended his hand. I dropped the crumpled yellow sheet into his hand and walked away. He looked at me and at the paper, confused.

You can’t argue with these folks. But you don’t have to carry their garbage.

I’ve been working on a few thoughts re: the healthcare “debate” we’re having in the U.S. from my perspective as a “professional consumer” of same. I didn’t plan to write this, though.

I have been seething at the treatment President Obama received addressing Congress about healthcare last Wednesday. The disrespect shown him – not just by Addison Graves Wilson of South Carolina, aka. “Joe the Heckler” but by the entire Republican caucus – was nauseating. Almost to a person, these “statesmen and women” of the opposition heckled the President waving sheafs of paper, petulantly pouted, booed and catcalled, and shot him endless hate-filled sneers worthy of a pissed-off 8 year old. One congressman even walked out for benefit of the cameras. It was disgusting.

Their venom has nothing to do with healthcare. It has everything to do with race.

Like the birth certificate flap that entertained us through the Summer, Spring’s anti-stimulus “tea parties” and pretty much every other pseudo-conflict stirred up since Obama’s election, the racial subtext of the health care “debate” is blatant.

Some people cannot abide having an intelligent, thoughtful black man in the Oval Office.

Finally someone with a pulpit has put the obvious out front and center. Maureen Dowd titled her column in yesterday’s New York Times Boy Oh, Boy, putting the missing word back into Wilson’s shout out, as in “You lie, boy!” Think about it for a nanosecond and you know she’s right. The old racist code word for black men was loud and clear.

Now, read carefully: no, not everyone who disagrees with Obama’s health care plans is a racist. Reasonable people have fiscal objections to government-run health care, philosophical objections, objections about his approach, and there are all sorts of worries about what change might do to our precarious status quo.

Are you hearing those people? No.

You’re hearing a U.S. senator boast how he’ll destroy Obama’s presidency by destroying his health care bill. You hear Master Wilson’s “liar liar” and how it’s netted him over 700 grand for re-election. You’re hearing Lindsey Graham – the so-called “reasonable” South Carolina senator – and a gaggle of other legislators calling the President a disaster.

And as always when politicians blow hard at the bottom of the barrel, they stir up muck.

Look at pictures from last week’s “tea parties”. Read the signs. You don’t need a psychic to see the real point of the protests. Obama is a “Fascist Muslim Communist!” (Will someone please tell me how anybody can be all those things at once?) Another shows Bin Laden passing the terrorist baton to Obama. Some of these fine patriots even put Obama’s picture in a pile of horse manure and took each other’s pictures standing in it. That’s a debate?

Death panels, granny-killers, black-on-white racism, a senator (Inhofe of Oklahoma this time) grandly proclaiming “I refuse to read the [healthcare] bill and I’m proud to vote against it!” Guns at town halls. Radio talk – serious – of killing the President. And anybody who has any kind of rational argument for, against, or middling on the actual issue of health care is a terrorist supporting a terrorist.

Don’t agree? Don’t think it’s racism, just strong opinions about a contentious issue? Take a look these photos from the first “tea parties” in April, set up to protest the stimulus package: “Obama’s plan: White slavery.” “The American taxpayers are the Jews for Obama’s ovens.” You look at the rest. I don’t have the stomach. The racial subtext has been front and center for the opposition from the moment Obama was elected.

The Obama presidency has brought out the best and the worst in America. So many of us have a quiet pride in our nation taking such a significant step last November, including many who disagree with him and didn’t vote for him. But at the other bottom of that barrel are those so incensed by his election they welcome him as termites welcome an exterminator. They cannot abide – abide! This! New! World!

Racism is the venom in the veins of America. It’s time to get it out – to call it out – before it kills us.

This “debate” disgusts me. And it has nothing to do with health care.

This happened yesterday. The only info you need to make sense of it are a) I was in the hospital for a few days about two weeks ago due to high fevers following an endoscopy (a look down the throat), and b) when they were looking, the docs saw something that concerned them,  declaring it Must Be Removed. I agreed. Now if only I could get it done…

Rather than polish it up and risk losing the, er, spontaneity, here’s the eMail I wrote to my friends.

Went to ENT (Ear/Nose/Throat) clinic today to get the thingy in my throat removed. The following happened:

1. Doc saw me, said situation is exactly what the docs in the hospital had said two weeks ago: growth on pharynx, probably papilloma, needs to come out. Said he’ll do an excisional (right word?) biopsy removing the whole thing (unless it extends into my brain or some other inconvenient spot). I said hooray for that! Continue Reading »

There has got to be a maximum number of diseases and disasters, conditions and catastrophes that one human body can handle before it just gives up and dives for the worms.

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down. Continue Reading »

…that happily hands out bottles of nasty narcotics, including morphine, but denies coverage for celebrex, the only anti-inflammatory approved for transplant recipients, citing as the reason that said transplantee (me) is two years too young (!) to meet their formulary guidelines.

Go, HealthNet!

Go, America!

Today I sat in the courtyard by the Nurses’ building at UCSF talking to someone whose partner lay in a room above us on Nine Long, the liver transplant floor of Moffitt Hospital, waiting, suffering, hoping for a new liver that might save his life. The man I was talking to was distraught, grasping at hope as loved ones and caregivers do coping with such suffering. I offered what I could, listening and answering his questions. 

He asked a lot of questions. As his partner in that hospital room had said a few minutes earlier, meeting someone who has actually been through the craziness of a transplant is more helpful than reading medical abstracts. (I felt an immediate bond when he said that: one wonk can always recognize another.)

As I answered questions about my experiences I realized it wasn’t approximately three years ago when I learned about the cancer in my liver and my own quest for a transplant began: it was exactly three years. To the day. 

After we parted I walked to my car, secreted in a relatively unrestricted area near Golden Gate Park about 10 minutes away. I kept walking, right into the park and all the way to the AIDS Memorial Grove. I wasn’t planning to go there. The grove is a quiet area in a small glen filled with beautiful plants. It has been there long enough that the young redwoods can now be called trees.  

I took some pictures – my own solace and serenity these days – then returned to my car and came home.

I’ve been fretting about the economy and my diminishing place in it the last few days. Who isn’t? Listening to that troubled man… meeting his stuggling partner in the uncomfortable bed on Nine Long… in a hospital room I’ve been in myself… remembering that telling phone call three exact years ago…

Three years count so much more than numbers on a financial spreadsheet.

I’m being silly. No, that’s too kind: I’m being stupid. I desperately want to write, want to update this blog and take it to new places because I’m sick and tired of thinking – and writing – about being sick and tired (and maybe I don’t have to for a while!) and I want to work on my plays again and write the essays kicking around my brain and I’ve got this idea for a novel and…

But I don’t.

What I have been doing is everything I can to avoid writing. Photographing. Having an operation (again). Reading. Walking the dog. Recovering from said operation. And… uh… did I say photographing? It’s all just surgery-excused writer’s block.

Oh, my new photography obsession is a fabulous mania. I’m having a blast learning all manner of photo techniques, how to visualize the shot, taking classes and reading books on the subject. And of course snapping pics, hundreds, anywhere and everything, to the bored distraction of my friends, family, and dog. Somehow all the trauma and medications of the last three years left the visual parts of my brain functioning better – certainly more willingly – than the language parts. But photography isn’t writing. I need to write.

Well, the surgery excuse is now officially old. The operation succeeded – mostly – I’ve recovered – mostly – the dreaded bubble’s gone – mostly – and I even made it to the gym this week – mostly. Time to put fingers to the keyboard. Before I shoot at the other writing goals though, I need to exorcise the health stuff.

So here, as a sort of mopping-up exercise, are three scenes from a surgery, which took place November 5th.

1. Nooo! I don’ neeed a kidneeee!     

In which the joys of pain meds reveal their dark side.

2. “Do you know why you’re still here, Mr. B?”

In which I learn you can wander the halls too long.

3. Terror.

Yes… well… there’s no other word with quite the impact of “terror” these days, is there? Yet I have to use it: all the synonyms I can find really just tell a part of the whole… totality we call terror. This post will be along shortly. Nailing down what I’m trying to say isn’t easy.

There. Medical demons exercised with the exception of #3. When it is done, I get to move on. Next posts, already in the boiler, will be on hypnotherapy and surgery, and just how much is a cure worth? Stay tuned.

For those who don’t know how most operations begin (may you long cherish that small bit of ignorance) here’s a primer.

You check in to a Pre-Op room hidden deep in a hospital. You are led to a little curtained-off cot, one of half a dozen in a row. Nurses come by with papers. You sign your life away, agreeing for the third or fourth time to the same procedures that landed you in the room in the first place. 

Your clothes, any dignity you might still have, and all other belongings are taken away to be returned “later”. Hearing the word “later” your mind substitutes “the other side” and tries to imagine what that might be like. You shiver uncontrollably. Continue Reading »

I am now apparently  allergic to all pain meds no matter how they’re delivered. IV or pill, even the patch so beloved by many, every last one of them makes me puke. Lovely!. Not. Some people regurgitate like cats: casually, out of boredom, with no consequences. Not me: even thinking about it is a misery. So you can see how happy I was to spend my first conscious post-surgery hours desperately trying not to throw up and failing. 

The weird thing was, I had no pain. Nada. Just the usual post-op stiffness that comes from being artificially dead for a few hours. It wasn’t a difficult op and all the nerves in the area had been killed off during previous ops, so my body didn’t take too much of a hit. And I’d been training for this. No, really, I trained for surgery: at the gym, hiking with the dog, yoga, even hypnotherapy. Anything to get my body and mind in as strong a state as I could so I’d make it through this. After my last time getting chopped, I left no option that might aid survuval unexplored. And it worked. Something did, anyway. Continue Reading »