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.