I am still alive.
I know I’ve disappeared like a blip into the flashing bytes and bits of cyberspace. If it is any consolation, I’ve done the same thing in the real world, answering the phone only when I’m not sleeping. Four or five loyal friends hang onto me and keep calling, keep demanding that I maintain at least a toehold on the firm, sandy earth of the here and now. Otherwise, I think I might drift away on an ocean of sleep, driven further out to sea by currents of pain and nausea—but mostly by exhaustion.
My world has shrunk. My life has all the same components it had a couple of months ago—a loving husband, a busy and affectionate son, a house in Montana, an obnoxious tabby cat brought back with us from the tropics, ideas for writing projects flitting across my brain like silent films, two families who provide us with emotional and material support, friends who baby-sit with five minutes warning and come along to medical appointments…and, unfortunately, my sarcoidosis. The shrinking of my world isn’t due to a loss of these “raw materials.” Instead, it is as though my life is a ball of bread dough. Rather than tucking the dough into a warm nook, covering it with a clean towel, and letting it rise, my disease and the treatments I receive to combat it, have led to an ongoing working and reworking of the dough. I’m not discarding anything, but I, and my drugs, are pressing and shaping that ball of dough into a smaller and denser lump.
Nevertheless, I am still alive.
The shrinking—or the condensing, just to stretch a tired metaphor a little more—stems from the disease and the devilish regimens the specialists have constructed to fight it. Every other Thursday, I show up at the Cancer Treatment Center for chemotherapy, although I don’t have cancer. But since my manifestation of sarcoidosis doesn’t respond to a single agent, the doctors have decided to throw every conceivable treatment at the disease (and thus me) all at once. So, I take prednisone and thalidomide, as well as receive infusions of Remicade and Cytoxan (the chemo). The data the sarcoidosis gurus use to justify this odd and intense combination of drugs is laughable, if this were a laughing matter. Six people with my “neuro-refractory” form of sarcoidosis responded well to Cytoxan in one study; eight other people with skin and cardiac presentation went into remission after a course of Thalidomide, so perhaps my cardiac/pulmonary/liver/brain combo will do the likewise. When you are afflicted with a rare form of a rare disease that has no known cause and no known cure, you lower your standards for proof a little bit. Since I’d like to avoid a “cardiac event” (polite medical-ese for keeling over with no hope of resuscitation) or a stroke, or another God-awful episode of sarcoidosis-induced meningitis, I endure the pharmacological version of the drinks I used to make in college (a little vodka, a little gin, a little rum, some schnapps, and a dash of Sprite and Kool-Aid to make it go down). In other words, I show up every other Thursday to have poison dripped into my veins.
Even though the nurses and the oncologist are kind and gentle, even though the Cancer Treatment Center has homey touches meant to conceal—or at least minimize—the intense medical reality of the place, there’s no denying that we who have entered are in the realm of the medical hard core. Yes, they have nice quilts and the best sugar cookies, but they also have puke pans and defibrillators alongside.
I am still alive, although there are mornings when I’m not sure. Who knew the human body could be so tired? Who knew a gal could puke up most substances known to humankind—like water, Gatorade, saltines, water, more water, and my pills. Nevertheless, I press on, showing up every other Thursday for chemo; every four weeks for Remicade, and swallowing three handfuls of pills every day. And, no, I don’t have Munchausen’s syndrome, nor an inner masochist. I’m enduring all this because something seems to be working. My vertigo is improving. Most days now, it doesn’t feel as though I’m on the storm-tossed S.S. Minnow (without the courage of the fearless crew); most evenings now, I can close my eyes and not feel the room spinning and whirling like a kaleidoscope. Most days I can now look at words for a couple of hours, instead of my old twenty minutes, before the whirly birds in my brain start chuckling and twirling. And, with one major recent exception, I’m not regularly falling over.
So, I am still alive, and I think I might be possibly starting to get better. (But I’m afraid to speak, much less write this last part. I never used to be terribly superstitious, but then, I never felt like someone was prying open my skull with a pick-axe. So, please, after reading this semi-positive statement, find some wood-like object and knock on it for me.) But being alive isn’t all there is to living. I am so ridiculously tired that sometimes it feels like too much work to pull the sheets up over my semi-slumbering body. I am not even sure that my son and my husband know who I am anymore. Andrew probably thinks some odd lady a la Rochester’s first wife (the crazy one in the attic) kidnapped his mother and walks the floors between bed and toilet. If it weren’t for my most loyal friends calling me, and then re-calling me until I fumble for the phone and croak out the details of my life, I think entire days might pass by when I don’t speak at all.
The worst are the days following chemo. I feel as though the kindly oncologist has infected me with stomach flu, and then laid me down in the center of the road to let buses and cement mixers run over me. Jay has done a marvelous job of keeping Andrew out of the house for these days, so that my little guy doesn’t need to witness his Mommy puking and cursing and flopping around like a fish out of water. The after-effects of the chemo really hit me on Friday night, so on Saturday, I wave goodbye to my boys from under my pillow and know that Jay is teaching and showing Andrew all the things I had planned: they bike, they ski, they watch football (OK, that one I probably would not have prioritized); they go bowling; they shop; they hike; they have dinner with friends; they seem to spend an awful lot of time at the local brewery, Jay swilling stout and Andrew stuffing down popcorn. I wouldn’t have it any other way, given our current circumstances. This is not the life I envisioned for myself or my family, but it’s the life I got. I’d rather Andrew be out in the world then keeping some pseudo-vigil by his nauseous Mom’s bed.
So, although I am still alive, I am lonely. I spend most of my post-chemo days alone with my ipod and the books Jay’s Dad is nice enough to let me download from his audible.com account. Sometimes Kate, the erstwhile tropical tabby, cuddles into my flank. My Mom calls to make sure I’m alive; Jay and Andrew check in by phone; my life-line of closest friends call and then leave me to my sweaty sleep. Otherwise, the house is silent; I am alone with any dark thoughts that clamor for attention above my books. I am lonely, but I’m not sure I would change my routine. It’s not as though I am up for entertaining on these days. Jay encourages me to have people come visit me when I’m stuck in bed, but I shudder at making acquaintances watching me lurch off to the toilet to puke up a few teaspoons of water.
Although the details aren’t pretty, this is my life. I have faith—and even some radiographic evidence—that I am improving. I even take comfort in the bitter winter cold that has subsumed our town. Like the grass and the small living things hunkered down beneath the frozen tundra, I am alive; I have had to go to a dark, alone place, but plan to emerge soon from the snow and the ice.