Choosing the right specialist is a little like choosing the right grad school. That is to say: it is vitally important to your success, and choosing the wrong one can negatively impact the course of your life. No pressure. Luckily, I already knew which specialist I wanted because he came with a modifier. When my other two doctors, some family members and a few friends talked to me about which GI guy to see, they said, "Well, there's Dr. D, he's the best." I started to think of him as Dr-D-He's-The-Best. I was told it would be six months before I got in to see him. My appointment was two weeks from the date of referral. I considered myself fortunate.
When I arrived, I was the youngest person there--by about 40 years. The age disparity highlights my sense that none of this is fair, my sense that I'm too young to spend THE REST OF MY LIFE sick. I begin to feel not-so-lucky. I sat silently and read my Denis Johnson stories, looked at my shoes, wrote some lines in my head about them both, and the old people, and the spots on the carpet...
My surgeon, who I am so very fond of, said to me, "GI docs are not as personable as you and I."
He was not wrong. But maybe not very many people are as personable as the two of us. We did, after all, discuss what I would call my disease inspired punk rock band: "Toxic Megacolon." Every time he mentioned a new horrible possible outcome, he added "And that should be the title of the first single," or, "You should make that the album title." During my last appointment with him, he told me I would probably be disembowled and that I might just lose my liver and my vision as well. I walked out of his office feeling awesome. He's the bedside manner master. Like I told my close friend Jack, I say we throw that man a parade.
Now, let me say: I like Dr. D. He's one of those superduper smart people I can admire--BUT I walked out of Dr. D's office feeling like shit. Mostly because of some miscommunication. You see, I was high on drugs the day of my diagnosis. I don't remember a damn thing about what the surgeon said. I only remember cursing, weeping inconsolably and telling the surgeon "MY BODY REALLY DOES HATE ME!" in between sobs. My husband, mother and grandmother all three had conflicting stories about what the diagnosis actually was. I understood it to be severe distal ulcerative colitis. I was wrong. After talking to me about symptoms, pushing on my belly, reading the surgeon's report, examining the biopsy report (which, btw, "could not rule out infectious agents" i.e.: was inconclusive) and looking at pictures of my horrendous little wound-friends, Dr. D said "Well, I am certainly convinced. Your pictures are like a textbook." He then proceeded to tell me that my entire colon is involved. All the way up to the cecum. I still have Ulcerative Colitis, but now it's severe pancolitis. Which is the very worst damned one to have. Lucky me.
He also said, "You don't need to start worrying about cancer for eight years." I thought: I'm 27. I'm 27. I'm 27. In eight years I'll be 35. I don't need to start worrying about colon cancer for 8 years?! Thanks for being so flippant about it, D. Then I remembered the waiting room, considered that maybe he thought he was talking to a 90 year old, and forgave him.
In other news: Apparently the specifically-for-my-disease drug is not currently at a therapeutic dose. All of the improvement I have seen is the result of that Devil, Prednisone. He upped the dose on my 5-ASA (Asacol)--which moved the price from $250/month to $362/month. I will only just be on the therapeutic dose at that level, and may have to bump up again.
So, yeah, when I left his office I felt like shit. He did make one ass joke: "This disease is the proverbial pain in the ass. But it's manageable." I am currently a big fan of ass jokes. But I need more than one a visit to balance out that much unpleasantness.
FURTHERMORE, surgeons AND specialists sure know how to push on organs. I feel like I've been stabbed again. I managed to keep my energy up and did the troop leader thing tonight, in a new dress I bought to console myself about the fact that I still hate my new Edgar Suit. I'm trying to buy myself one clothing item a week, until my birthday money runs out. It'll be at least two years before my skin is ready for a new tattoo anyway. Have I mentioned how very lucky I am?
Actually, it's a good thing I don't actually believe in Luck or Anything Else, or I'd have some real anger issues. I'm so glad my life sucked enough to purge me of belief before now. I don't think I could handle adding Existential Crisis to my list of Things To Overcome.
I may post the poem I wrote today. It's not ever going to be good enough to save for anything.
Thanks for letting me know you are blogging again. It sort of pisses me off that a disease has managed to kickstart the blog of one of the top two or three smartest women I have ever met. Not pissed at you, more at the way the universe sometimes seems to be a kind of cosmic Rube Goldberg device that whirrs and turns and clangs, and at the end of it is a broomstick with a boot that kicks someone in the ass. Sorry, I guess that metaphor may hit a bit too close to home.
ReplyDeleteAnd I am kind of glad, too, because that means I get to read your stuff again. Then I feel way guilty. As if your agony is a big production number out of "Springtime for Hitler", a song inside a musical inside a musical based on a movie that is, itself, a remake of a movie, written for MY entertainment.
So scratch that glad part. Scratch anything remotely connected to the word glad. Obviously none of this is for my, or anyone else's, entertainment. But it does serve to pry open my eyes. And it acts as a reminder to all of us, a reminder, like Randy Stonehill's song, "News for You."
Your ability (in all its glorious snarkiness) to give voice to the pain, desperation and hope is, dare I say, a gift. And even if you often want to punch the giver in the face (an impulse even the giver understands) you will hone your craft by writing about something real. Painfully real. Academia can insulate you from that. Your ability to give voice to the pain, desperation and hope is, dare I say, a gift. Yeah, I said it twice. Just so you don't miss it: the gift is the ability, not the disease. It takes a stronger person than I am (someone like you, I am guessing) to call a disease a gift. Unless, you can look at the disease the way Thomas More, before he lost his head, looked at his enemies: "
Give me thy grace good Lord...
To think my most enemies my best friends,
For the brethren of Joseph could never have done him so much good with their love and favor as they did him with their malice and hatred."
I once worked for a pathologist. He was a nice guy but more comfortable around cadavers and tissue samples than around living human beings. So his bedside manner left a little to be desired. But I think I would rather hear the truth from him, or Dr. We're Now Going To Call It Severe Pancolitis, than from Dr. Pangloss.
And I would rather hear the Truth from you than from Pollyanna.
Hang in.
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