Posts Tagged ‘liver transplant’

I’m sorry, I’m not accepting any new diseases right now. You might try again next year…

Wednesday, September 5th, 2012

Six months ago, learning I had a spot of skin cancer on my arm, I freaked. More than freaked: I was absolutely outraged. How could this happen? Why me? How could this happen to me?

Never mind that I’ve been expecting skin cancer’s arrival most of my life. Whiter than white, that’s my gene pool. Skin cancer’s more common in my extended family than healthy relationships. My mom fought an ugly battle with it all the way to melanoma’s threshold. It would’ve won if ovarian cancer hadn’t gotten to her first. My sister has almost no melanin in her skin. Ever the outdoors-woman, her skin goes from white to red to white again, never getting even getting close to beige. Both of us have had solar keratoses burned off our faces and necks for years. And in case we missed the point, our grandmother’s maiden name – she was born on the West Coast of Ireland – roughly translates from the Gaelic to "the tall pasty people".

Add to the genetics the fistfuls of meds I take to keep my borrowed liver from rejecting, each with a Day-Glo warning label screaming, “stay out of the sun!” plus regular reminders from the dermatologists that it’s when I get skin cancer not if, and a spot of basal cell carcinoma should come as no surprise to me at all.

It didn’t. Except it did.

How could I have a new disease? I moaned. Wasn’t liver cancer, a transplant, a weird and rare hepatitis outbreak, two hernia operations, the unexpected arrival of two autoimmune diseases –  another gift from the family genes – wasn’t that enough?

Yes yes. Stupid question. But for two days stupid questions were the only ones I could ask, intelligent ones being drowned out by  the moans and whines of “oh poor me, oh poor Eddie”.

A week later, back to my normal self (and what the hell might that be?) I returned to the dermatologist, had the half-dime-sized spot burned off my arm, hurried off to yoga, grabbed lunch, picked up Otto, and drove to McLaren Park where we went on a long walk, me taking pictures and Otto sniffing and peeing. Shock and anger and whining? Over a dot of skin cancer? Please. I’d assimilated my latest disease.

Yet the question does creep into my mind: how much is enough? How much is too much? How much can my body take? More to the point, how much can my mind?

Last week I broke two ribs. Nobody can figure out how or why. I did not fall, I had no accident, did not black out. I was shocked and it hurt like hell, but no outrage broke through, no self pity. The three weeks before that were devoted to the misery of a hideous sinus infection which scared the hell out of me when it moved into my eyes (!) puffing them out until I became a scary-movie version of the Pillsbury dough boy. Then there were miserable reactions to the antibiotic used to knock the infection out. I ended last week with an MRI of my liver, ordered by the docs to see if there’s something they can blame for rising liver enzyme counts and began this one by getting an overdue blood draw on Labor Day.

I forget how awful this all is until I see it reflected in others.

The friend who drove me to the MRI appointment – and who has ferried me about the last week because of the awesomely painful broken ribs – asked why I was having the scan. I think he assumed it was for the ribs, but you can never be sure with me. I told him about my problematic no-longer-new liver and then, in his eyes, I saw how heavy a burden all this is, how impossible it is to imagine living my life as one ailment piles on top of another over and again until there seems no human way to cope with it all. I hate seeing that look in others. I dread the times I feel the burden myself.

Poor Eddie didn’t freak out over the skin cancer. He panicked. Panicked wondering how I could possibly cope with one more problem.

I expend more energy fighting to keep my mind and emotions in some sort of balance than I do trying to keep my deteriorating body intact. I suspect this is essential, the only way I can stay alive.

Four years and still not dead

Sunday, August 8th, 2010

“A transplant patient with an autoimmune disease? That’s impossible!”

–from an episode of House

I just passed the fourth anniversary of my transplant, or as I prefer to spin it, my fourth new birthday. When the count of years starts getting out of hand, it’s nice to have an alternative, even if it costs an organ.

A scan of my not-so-new liver was tumor-free and the annual draining of the blood showed my various counts lingering near acceptable ranges – acceptable for me if for nobody else. It seems I’m good to go for a while longer.

My hepatologist is brilliant: I could not be in better hands. But even she’s a bit mystified at my continued presence. Oh, she’d probably deny it, but I’ve seen her expression during the bad times, I’ve parsed her careful choice of words. My continued presence is a continuing wonder.


About all that health stuff…

Tuesday, February 23rd, 2010

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…)

Medical system FAIL

Wednesday, August 26th, 2009

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…)

Happy 58th birthday! Uh… hold on… better make that “85th”

Friday, July 10th, 2009

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…)

Three years and counting… count.

Tuesday, March 10th, 2009

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.

Three Scenes from a surgery

Thursday, January 8th, 2009

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.

No belly-search by TSA!

Wednesday, October 22nd, 2008

Amazing but true, folks: I’m taking a quick pre-surgery trip to San Diego and I’m happy to report I – and my ever-expanding belly bubble – made it through airport security without being “examined!” And a big hooray for that!

OK, I took precautions: a baggy t-shirt covered by a ratty jacket, strict Victorian-standard corseting, and of course the trick all men of a certain belly size use to impress others with their physique, a serious sucking in of the gut.

Maybe none of it mattered, maybe it was just that the crowd pining to get to the Other Side was large and the TSA agents wanted to get  rid of us. Whatever, it was nice not to have to go through the “what is that? Ewwww… pull DOWN the shirt sir!” routine again.

Now, to the beach! (Shirt on, of course.)


Saturday, October 11th, 2008

Funny thing about confidence: you don’t really know you’ve lost it until you start getting it back. Without an inner voice constantly whispering a “you can do it” nag, a hypercautious agony aunt takes over and plunges you into a fog of jitters. Auntie has excuses for everything. “No, no, no!” she hisses. “Be careful!” “Oh, you really shouldn’t go out tonight. You’re not quite recovered you know!” “Of course you shouldn’t feel guilty about not taking that bike ride! Look at what you’ve been through!” Eventually this irritating scold owns you so completely you cringe at the risks involved with everything. “Be careful of that tea now, it’s hot!” “Don’t trip on that step!”

Unless you had the misfortune to be raised wary (or had a very difficult childhood, the same thing), auntie’s isn’t the default human condition. (more…)

Every time I start a post…

Saturday, September 13th, 2008

…Bang! I slam into another concrete wall pretending to be a speed bump.

  Twilight, Shelter Cove, CA

In January after surgery took me down, I was miserable enough to ask myself – for the first time ever – the big question: Should I stay or should I go? Just hang it up and dance down the tunnel of light? And for the first time, I was indifferent to the answer. But as I recovered my stubbornness kicked in – late, but much to my relief – and so here I am.

Five months later I found myself trying to cope with a bout of confidence of all things, struggling to really believe I’d regained something of a semi-functional life for the first time in two years. I even got to take a road trip. Then I was knocked flat by a simple endoscopy (tubes and cameras down the throat for a veinal lookie-loo) which re-triggered my ever-hovering hepatitis C and left me on the couch panting and deranged for two weeks.

  King's Range, CA

Recovering from that would-be-funny-if-it-didn’t-suck experience, I’ve spent the last month plus agonizing over whether to have yet more surgery to fix the ever-enlarging bubble on my abdomen, the result of last winter’s hernia repair that didn’t go so well. The bubble’s spawning now, with two tiny new bubbles popping up. I swear Alien’s in there doing something evil. (The surgery decision: No! NO! NO KNIVES! Not ’til I have to! [Which may be sooner than I’m telling everybody.])

And through all this, my new liver, which had actually taken to behaving itself, decided to do some sulking again. And so now I’m back in this gray area where some things work, sort of, other things not so much, not knowing day to day what it’ll be like and wondering just what the $#^% “health” is, anyway?

I suppose the biggest epiphany I’ve had from all this is something I already knew: There’s this line running through my life. Stay on one side of it, and the deities smile benignly and permit me to muddle along. Cross that line, and bang! (there’s that ‘bang’ again) those same gods set the hounds from Dante’s circles on me. This line is as thin as a new-bought razor blade.

  Otto taking a beach nap

Anyway, I’ve decided to post the various fragments I’ve been working on, plus a few off-topic bits (a poem, anyone?) just so I can make some sort of break with the last six months – writing-wise, anyway – and start anew. Consider these posts – they’ll be showing up over the next week – a mashup of fragments from my muse and detrius from my mental garbage collector. Oh, and there’ll be pictures: I’m obsessed these days with photography. These are from a drive to California’s Lost Coast last week.