Update

December 20, 2007 at 10:24 pm (Uncategorized)

Hi all–

Jay again with an update.  Rebecca’s doctors have ramped up her doses of remicade and prednisone in hopes of containing the sarcoidosis flare-up Bec has been wrestling with for the past five weeks or so.  She is cautiously optimistic that these horse doses will help, but she still is having terrible headaches and vertigo, making reading and writing still pretty painful (and nausea-inducing).  Her doctors have recommended that she not overtax herself while giving the drugs a chance to work, but she hopes  to be posting again soon and wants to thank everyone for your care and concern.

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It’s a Bird, It’s a Plane, It’s… Super Goose!

December 7, 2007 at 11:15 am (Uncategorized)

Last week Andrew learned about super heroes. Of course, he’s seen dozens of trick-or-treating Spider Men on Halloween, but because my husband Jay and I persist in our sysiphisian efforts to shield our nearly four-year-old son from the casual violence of popular “entertainment,” Andrew hadn’t yet fully comprehended the gestalt of the Super Hero — that these men and women have intriguing special powers, that they rescue innocent people and take out bad guys, that they get to wear cool costumes, and that many of them wield outrageously effective weapons.

It was the weapons that hooked Andrew on the various super hero stories that we told him to induce him to eat his dinner. (“Two more bites and we’ll tell you about Bat Man!”) I can’t say Andrew’s fascination with the big guns surprised me; I just felt the same rueful twinge I get when Andrew runs around the house using his hand as a gun while making shooting sounds, or when he drags a small log into position in the yard and declares, “I’m about to blast my cannon!” I’m learning what liberals need to remember come election time: people like guns. (Especially small boys.)

After dinner, frantically jumping around fueled by the sugar of his dessert and the excitement of his new knowledge, Andrew began to invent his own super heroes. Sure, Bat Man with his Bat-Mobile is cool, and Super Man can soar through the air with his cape billowing out behind him. But they’ve got nothing on Super Goose. Super Goose has (and I quote directly) “cannons and guns and knives and pistols and swords and weapons of all sorts on the ends of his feathers.” With his deadly feathered arsenal, Super Goose “kills bad guys.” While I was indeed impressed with Super Goose’s weaponry, I was having problems imagining the fellow. “Is he a man dressed in a goose costume?” I asked Andrew. “Or an actual goose?” Solemnly, Andrew answered, “He’s a real goose.” We did our best to suppress our hilarity at that vision — and then about Andrew’s next super hero creation, the category challengingly-named Super Monster, whose mission was “to kill bad elks.” (Hunting season just ended up here, though we couldn’t help picturing service organization members gone to seed. “Oh, God! The Elks are meeting at the Lodge tonight. Lock your doors and close your shutters!”)

It made for an entertaining evening, but I really didn’t give any more thought to Super Goose and his compatriots until yesterday, as my thoughts turned dark and self-pitying. In the past three days, I have learned that in addition to having endured one rare form of a rare disease (a cardiac manifestation of sarcoidosis), I now have two more rare presentations of it: neuro-sarcoidosis (affecting not my brain matter, but my cranial nerves) and osteo-sarcoidosis (affecting my bones), to accompany all of the more prosaic sites on my body the disease has appeared (lungs, lymph nodes, liver, and joints). Worse, these neurological and bone episodes have occurred while I’m on the highest-tech, gold standard treatment for sarcoidosis (a monthly infusion drug called Remicade, which suppresses critical aspects of my immune system). Think of a cockroach growing stronger while you are spraying it with Raid.

I was feeling particularly persecuted because of how the discovery of the osteo manifestation came about – two days ago on a trip to Missoula to meet with an orthopedist specializing in foot disorders. I was sent to see her because my local orthopedist diagnosed me nearly six months ago with a stress fracture in my right foot. Since I’ve been taking high doses of prednisone for a long time (prednisone is usually the first agent used to treat sarcoidosis), and prednisone can cause significant bone thinning, and an MRI and a bone scan showed “significant edema” in the sore foot, diagnosing a stress fracture was a slam dunk. Or so the local orthopedist thought. So I spent six weeks in various orthopedic boots; then two weeks in a walking cast; then another six weeks in new cast with instructions to avoid putting any weight on the bad foot. Since I can’t use crutches (long story), this meant I had to get around my house on a collapsable non-motorized scooter (and then practically wield a Super Goose-ian weapon to get Andrew off the contraption so I could actually use it). Despite all this, the foot continued to hurt. Something wasn’t adding up—hence the trip to the specialist. The Missoula doctor took one look at my MRI and declared, “That’s not a fracture.” All my foot treatment for the last six months had been misguided. My cast came off, revealing a withered, hairy, and foul-smelling leg. The Missoula doctor e-mailed my MRI to a specialist radiologist, talked with my own sarcoidosis specialists, and diagnosed the problem as bone sarcoidosis.

On top of that, my neurological symptoms have trapped me in bed with a headache unlike any I’ve experienced before, with searing pain behind my left eye socket and left temple. The left side of my face has gone completely numb. Reading and writing make the room spin and my stomach heave. (Not to make y’all feel too guilty, but this writing session has already caused one trip to the bathroom.) The sarcoidosis specialists have said that “hopefully” the Neurontin they recently put me on (which blocks nerve pain) will soon build up to high enough levels in my body to alleviate this mess.

What is it with this disease that makes its powers seem unstoppable? It pops up in my body wherever it wants. I’ve written before that having sarcoidosis is like playing Whack-A-Mole—the video game where you try to bludgeon a yard-destroying critter with a mallet wherever it raises its head. My doctors chase the disease from organ to organ. “It’s in your liver!” “It’s in your bones!” “Wait, it’s in your brain and your heart…” Pondering my illness’ passion for variety (why can’t it just pick an organ and stick with it?), I had one of those thoughts that that I usually forbid from entering my mind: “Sarcoidosis is going to kill me.” I was too tired, in too much pain, and too drugged on pain killers and nerve blockers to stop myself from thinking this, from feeling the utter defeat of my body.

I will remember this thought, which came whole into my mind, because fast on its heels came another, emerging like a quartz crystal from dirt: “But what about Super Goose?” And I started to laugh and laugh in the bed to which I have been bound lately. The sheer ludicrous image of Super Goose—and the thought of my son’s beaming face conjuring him—was enough to bring forth belly laughs. What would Super Goose do for me, I wondered? Why, he would kill the bad guys within me. I pictured the rush of Super Goose’s feathers as he flew through me, his cannons firing, his knives flying, blasting the sarcoidosis out of me, leaving my bones white and strong, my brain normal, and my heart thudding regularly. He would honk goodbye in a chivalrous way, going on to kill the next bad guy, the next weird disease afflicting another hopeless person somewhere else.

Andrew’s fantasy gave shape to something universal in him—and in me and in all of us. We are drawn to the world of Super Heroes and Super Villains (avian, bovine or otherwise) because we need to name and give shape to the shadows that are bigger than us, the roaches that seem to grow no matter what we do. We need help to think the thoughts we cannot let ourselves think. And then we must do battle against those thoughts.

I will not let this disease be the end of me. That is why I am sitting up and writing today, even though it makes me throw up. That is why I force myself to have dinner with Andrew and Jay at the table every night and why I force myself to talk about things besides this stupid disease. Last night, we talked about dog breeds. The night before, it was the construction equipment we saw in Missoula. Sarcoidosis can root around my body like a mole looking for a perfect bit of turf, but it will not kill me. I will not let it. And neither will Super Goose. Did I mention that his feathers are bullet proof?

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Under the Pillow

December 2, 2007 at 12:15 pm (Uncategorized)

I’m not sure how many words I’ll manage today. I’d like to tell you the detailed story of my past couple of weeks. There were hospital days when I was in so much pain I measured time not by the big clock across the room but by the morphine pump next to my bed. Every ten minutes I could press the magic button and get two minutes of sweet relief, before mentally pacing out eight more minutes until I could press the button again. There was the parade of doctors, rustling into my hospital room, with their starched white coats fluttering behind them like royal capes. I would uncurl myself from my fetal position and remove the pillow I had put over my head to block out any ray of light and try to make sense of their theory of the day: meningitis, West Nile virus, neurosarcoidosis. Some day I’ll tell you about the doctor who insisted on turning on the brightest of the overhead fluorescent lights and then chided me as if I were a toddler for my condition.

Five days in the hospital, kept sane by morphine and my husband Jay’s cool, dry hand in mine. I had to stop myself from thinking too much about Andrew, my almost four-year-old son, who was at home with my parents. I felt his absence viscerally, as I knew he did mine from his life. Someday I’ll tell you the whole story—of oscillating between self-pity as viscous and impenetrable as super glue, and thankfulness for the love and care I received from all angles. My parents dropped their lives and dashed to their car and drove to us on icy roads; Jay was grey from worry; friends phoned and tried to visit (I guess that pillow over the head thing can seem antisocial).

I want to tell you this whole story not so that I can return to the morass of self-pity but because it’s important to speak it. Under my pillow in the hospital, I missed writing—not because I want to see my name in print, or get a book contract, or get paid for my latest magazine article. Through the haze of pain and narcotics, I realized that right now, this disease, this god-awful, goddamned sarcoidosis is my story, and it’s the story of thousands of other people stricken with other god-awful, goddamned diseases (well-known or obscure). I’ve hinted before of my guilt at writing so publicly about something as deeply private as the dysfunction of nearly every organ system in my body. Under the pillow at the hospital, I realized this inherited squeamishness is nonsense.

At home now, I’m practically an invalid. I can use the bathroom on my own, and I can struggle into the shower every couple of days. What I can’t do is care for my son, read a book, and, until today, write a word. I’ll pay for this session with my beloved letters, though. Already my stomach is roiling and the room is spinning. Talking on the phone for more than a few minutes exhausts me. When I crawl downstairs (remember, I still have my cast on), the rooms look unfamiliar. Andrew seems to have grown an inch every day. He and Jay have developed routines and rituals in which I have no part. I’m too tired to force my way into them. I crawl back upstairs and wait for the room to stop careening around me. In bed, things stop spinning enough for my worries to emerge. The doctors have increased my immune-suppressing drugs enough that they recommended we pull Andrew out of pre-school. He is simply bringing home too many germs for my weakened immune system to battle. We need to find a good nanny. We need to help him understand that this change in his life is not his fault. Somehow I want to help him not hate me for laying in bed, pillow over my eyes, the antithesis of what a mother should be.

What the hell is wrong with me? A trip to Billings (which involved light-blocking eye-shades, a pillow, noise-reducing headphones, and a shitload of oxycontin) to see a renowned neurologist confirmed what my local (and wonderful) rheumatologist already theorized. The sarcoidosis has likely inflamed a cranial nerve (the neurologist had a lot of other details about this nerve and the brain stem and interfacing with other nerves; I still had a shitload of oxycontin in my system and have left the minutiae to Jay). Apparently inflammation of cranial-facial nerves isn’t all too uncommon with sarcoidosis, since sarcoidosis is, after all, an inflammatory disease. It’s inflamed nearly everything else in my body: my heart, my joints, my lymph nodes, my liver, my spleen. Why not move on to the brain and its delicate wiring? Once the nerve acted up, I started getting really bad headaches, so I disobeyed my doctors and took ibuprofen. This kicked off my apparently non-uncommon (not uncommon, that is, assuming you have an auto-immune disease and are receiving anti-TNF drugs) case of drug-induced aseptic meningitis. However, for the first two days of my admission, the hospital doctors were convinced I simply had a really bad headache, so they persisted in administering IV versions of the ibuprofen I took at home, which prolonged the meningitis.

Hope for me right now is in reducing the nerve inflammation. If I can do this, the piercing pain in my head, along with the vertigo and nausea, should improve. So should the numbness on the left-side of my face. The doctors ramped up my Remicade to knock out the sarcoidosis behind the inflammation. Then I must take handfuls of Neurontin daily. The Neurontin is supposed to block nerve pain. So far, it’s just made me extra stoned feeling, though I am typing today, so perhaps progress is ahead.

I have pledged to myself not to live day at a time, not hour at a time, but minute to minute. It’s the only way I can manage my swelling anxiety at the thought of living without books, without being able to write and concentrate. Will the room ever be still? The light continues to bother my head, so I spend much of the day under the pillows, feeling the pulse of pain in my head and its echo in my heart. Having decided my stories are worth telling—that the story of my sickness is valuable—will this disease rob me of my ability to do so? It has taken so much from me already. Please let it not take reading and thinking and writing. Please.

But these thoughts lead nowhere. It’s time for me to return to my pillow.

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