The Fog of War

September 24, 2008 at 6:51 pm (Uncategorized)

I know I’ve been absent lately. I have missed writing and posting my thoughts about the happenings in Chronic Town. I have scribbled down skeletons for a dozen different essays, but the bodies have remained stubbornly in my head. I haven’t had the concentration or the will to move from a scrawled idea to a coherent piece of writing.

I feel ill—both physically and psychically. I knew chemotherapy would be hard, but I underestimated how much the treatments would sap of the very little energy I had to begin with. Ever since I got sarcoidosis—and especially since the disease moved into my brain and wreaked havoc on my internal wiring—I’ve been extraordinarily tired. I’m sure every other citizen of Chronic Town can relate to the persistent, tugging, bone-aching fatigue I’m talking about. But before I started chemo, I could usually exhort myself with my inner drill sergeant to get up and at ‘em. “Get your laaaazy ass out of bed, Private Rebecca, and get to work/make dinner/play with your son, etc.” Now, though, my commanding officer has gone on vacation, or maybe she got sent to do a fifth tour in Iraq. No matter how loudly I yell and curse at myself, I can’t seem to muster enough energy to doanything.

I mean it when I say anything. Returning phone calls (from bed) feels like a huge amount of work; same with showering. I have an agent interested in seeing a couple of as-yet unwritten chapters, and I can’t summon up enough energy to even care that I’m probably blowing an opportunity I won’t likely get again. I should e-mail him and explain that I’ve started a rigorous protocol involving many different drugs. But even checking my e-mail feels like a chore. The thought of writing anyone back makes me tired. Simply spending time with my son exhausts me. I have rehab exercises to do for my messed up ankle, but I can’t summon up concern for its future stability.

I have launched a war against my disease. The only hitch is that the disease is in my body, so all the ammunition hits me—all of me. I have so many immunosuppressants coursing through me, I think you could draw some of my blood and set it on fire. I feel that combustible—and that toxic. There’s the Cytoxan (chemo), the Remicade, the prednisone, and the Thalidomide, as well as all the other crap I need to take so that I can keep taking the main agents: a daily antibiotic to prevent pneumonia; medication to help with nausea after chemo; an anti-viral pill; a drug that’s supposed to help with the vertigo and headaches brought on by the sarcoidosis in my brain; and so on.

I know that some of my readers think I’m crazy, that I should abandon the pills and infusions that the White Coats have recommended and try the Marshall Protocol (an alternate theory of both the cause and the treatment of sarcoidosis) or some other less brutal regimen. Maybe these people are right. All I know is that I have one son who is growing up faster than I can imagine, and I want to be present in his life—not stuck in bed because I’m dizzy and the room seems like it is spinning and my head feels like it’s going to explode. I left my meeting with Dr. Wizard in Cincinnati with a particle of hope that I could fight this disease and kick its nasty, granulomatous ass out of my body. It was the first time in a long time that I had felt hope, so I cling ferociously to that particle.

I have five more months of chemo before we can even assess its efficacy. I’ve only been on the Thalidomide for a month. In other words, this war will continue. To survive it, I need to lower my expectations of myself. Otherwise, I’ll make myself nuts. I’m trying to think small when it comes to daily goals. Showering, returning a couple of calls, doing my rehab, showing up to my various medical appointments, helping Jay with the dishes, putting Andrew to bed—those are accomplishments now, given how I feel, not something to sneer at and deride myself for.

The other night, I started bawling in bed. “I can’t do this for five more months,” I sobbed to Jay. “It’s too hard to make myself so sick so that maybe I’ll get well.” My husband gave me some of the wisest advice I’ve ever heard. “You don’t have to do this for five months. You just have to do this today.” Amen to that. Bring on the tanks.

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In the Flesh

September 10, 2008 at 3:09 pm (Uncategorized)

I know it seems like I’ve vanished into the ether. I haven’t. Quite the opposite, I’ve been wallowing in physicality. I’ve been preoccupied and occupied with my flesh and its (mal)functions.

As I wrote a while ago, I’ve started a new medical regimen recommended by a new doctor I saw at the University of Cincinnati. Ever since my sarcoidosis entered my nervous system last November, I’ve suffered from debilitating headaches and vertigo. I have committed to what I can only describe as a rigorous new protocol that involves twice-monthly chemotherapy (Cytoxan is the name of the juice I get), daily doses of thalidomide, continued monthly infusions of Remicade (the anti-TNF drug that is supposed to help with the inflammatory process related to sarcoidosis), and, just for the hell of it, I guess, my steady daily dose of prednisone (although the Cincinnati doc swore I could begin tapering off the prednisone as soon as my neurological symptoms improved.)

Like I said, none of this has proved to be ethereal. Chemo has made be acutely aware of my stomach, as well as my guts and bones. Susan Sontag wrote brilliantly in her essay, Illness as a Metaphor about the metaphors and myths that surround cancer and its treatment. She examined the rhetoric that imbues cancer (and later HIV/AIDS). Using a historical lens, she compared the images of nineteenth century tuberculosis patients with the modern patient and found that many of the cultural tropes remained the same: the wasted person melting away, poetically, of course.

I’ve written before that we—as patients and as a society—need to divorce sickness from the freight cars of baggage we carry with it. As I’m sure anyone who has had any medical condition that lingers for more than five minutes will attest, you get slammed in the head with this baggage when you have a chronic disease. An army of do-gooders crawls out of the woodwork to tell you to let go of your anger, that old pain makes you sick, that modern medicine will kill you, and on and on and on. It’s the same old tune that Sontag wrote about.

I hadn’t realized that I, too, was holding onto some of these misconceptions until I began chemo. I thought that I would feel a little upset in the tummy. I’m not too proud to admit that I even hoped that I might lose a couple of the many extra pounds I’ve gained during my four years on prednisone. True, there was a twenty percent chance I’d lose my hair. But I held in my mind a highly stylized vision of chemotherapy. I, too, would shed my excesses—fat, hair, disease—and emerge healed and cleansed.

Hah. Chemo doesn’t just make you nauseous. It makes your stomach feel like it has staged a rebellion against the rest of your organs. “We’re seceding!” scream my guts, “And we’re taking that large intestine with us!” Imagine me, a staunch Democrat, having to hear the rhetoric of states’ rights coming from my innards. The new generation of anti-nausea drugs like Zofran does a lot to calm down the revolution within. Unfortunately, they make my headache worse. When I’m dry-heaving bile, I opt for the headache, but still, it’s a crappy choice. Chemo also makes the rest of me hurt. I feel like I’ve got the flu. My bones ache; getting up to drink a glass of water seems like a journey to the South Pole. I’m so tired that sometimes even listening to a book on tape is too much effort. Instead of transcending my body, I am more deeply trapped in it. And this confinement doesn’t just last for the day or two after each treatment. It takes about a full week for me to return to “normal”—you know, back to the crushing headaches and the feeling that I’m living aboard a ship. So, now I view my life as one week “on” and one week “off.”

I’m giving the chemo six months. I even got a port installed in my chest, so that instead of having to start an IV on the veins in my hands the prednisone has turned into mush every time I go for treatment, the nurses can now just insert a needle into my pectorals. I push away the image of Uma Thurman in Pulp Fiction getting jabbed in the heart with a giant hypodermic filled with adrenaline. But the scene sticks (no pun intended), and every time I turn my head, I can feel that port lurking beneath my skin, keeping my mind attuned to my flesh.

Every evening, I get another dose of physicality when I take my thalidomide. Yes, it is indeed that thalidomide—the drug designed in the 1960s to stave on morning sickness in pregnant women that ended up causing thousands of babies to be born with serious birth defects. These “flipper babies” went on to live normal lives—or as normal a life as you can without arms or legs, and after a while doctors figured out that the drug worked well to treat certain types of cancer and auto-immune diseases. Of course, getting pregnant while taking thalidomide would be an exceptionally bad idea, and its manufacturer Celgene Corporation, does everything short of sterilizing me to insure I don’t get knocked up. I had to read a letter from an association of thalidomiders (what the adults who were born with the defects call themselves) in Canada. I had to sign and swear that every time I have sex, I’ll use two kinds of birth control (even though the sarcoidosis has shut down my pituitary gland and thus my ovaries), and every time I take a pill, I need to open a packet that contains a picture of a thalidomide baby and another version of the warning. Then, I have to push out each pill through a picture of a pregnant woman with a line through her; each pill is embossed with the same image. And every month, in addition to having my insurance company pay the Celgene Corporation $6,000 (I repeat, $6,000), I have to call the company and promise (again) that I’m having doubly safe sex.

It can be overwhelming—all this attention I pay to my reproductive system, my rebellious guts, my aching bones, and my throbbing head. But sickness isn’t sexy. So why should I have assumed that getting un-sick would be any less physical? I do try to engage my brain and my soul in the process of healing. As the Cytoxan drips into me, and as I swallow each thalidomide pill, I envision myself well. I imagine a day when my body won’t swallow up the rest of me, when I can spend a few hours lost in a book or a piece of music, not in my flesh.

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