Too stupid to die…

Lots of 19th century “innovations” are gone for good reason: horse-drawn wagons, the Saturday bath, walking across continents, surgery without anesthesia… novelties like these are lamented by no one except history buffs and masochists.

But one 19th century institution missing from our world is a true loss: the health retreat. Back in the day they were called sanatoriums: resorts set up for the “improvement or maintenance of health, especially for convalescents.” Today the  idea of withdrawing from life to recover a bit health is so odd that most people, hearing the word “sanatorium” translate it as “nut house.”

My oh-so-slow recovery from my latest medical travail makes me long for this old tradition.

I ache to check out of my life for a time and into another, one where meals are prepared and laundry is done and my duties consist of napping, reading, and taking long walks through woods and meadows. (more…)

–noun

1. Pathology. a quantitative deficiency of the hemoglobin, often accompanied by a reduced number of red blood cells and causing pallor, weakness, and breathlessness.

2. a lack of power, vigor, vitality, or colorfulness: His writing suffers from anemia…

Rrrrrrrrrrrrrrroad trip!!!

The car is tuned. It’s got new tires and is loaded down with jackets and maps and food for doggie and me and of course my camera and the tripod I always take and hardly ever use. The back seat’s converted into Otto’s Command Center so da pooch can survey the world from the comfort of his traveling bed. And we are driving down Highway 101 through the ridiculously green hills of an El Nino winter California listening to Roseanne Cash and Michelle Shocked on our way south to visit family and friends…

That’s what was supposed to happen. (more…)

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. (more…)

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! (more…)

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. (more…)

…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.

A short time ago a friend came by and we went out for a quick bite. I’d had a hectic and minorly frustrating day today and was complaining about it, as we are wont to do – most of us, anyway. After I’d vented and the conversation relaxed, my friend laughed.

I was puzzled. Neither of us had said anything amusing.

What’s funny? I asked.

You, he said. Listening to you rant about phone calls and classes and traffic jams instead of your medical  operations or test results or upcoming procedures. I haven’t heard you do that in years.

Ouch.

I was stung for a moment, even a bit ashamed. WHAT was I doing, fretting about such things? After where I’d been? Perspective, Ed, please! Perspective!

And then I rejoiced.

Did I ever expect to worry about such everyday problems again? Did I ever expect to have everyday problems again? How far I’ve come! And how damn amazing is that!

I deeply thank my dear friend for that lesson.