I’ve dropped from cyberspace because I’ve been the human equivalent of the ball in a ping pong game of health and sickness. I’m not complaining. For the first time in months—well, years—I’m bouncing into periods of relatively good health. Then, when the chemo gets a chance to deliver a serve, it’s usually an ace, and I spend a week rather abysmally in the land of feeling lousy.
Here’s a brief synopsis. After six-plus months, my difficult drug regimen (of chemotherapy–Cytoxan to be precise–prednisone, and Remicade) is finally beginning to pay off. For the first time since the sarcoidosis moved into my brain in 2007, I have been able to write for more than twenty minutes at a stretch. Last weekend, I spent four consecutive hours working on a writing project. Not only am I able to produce words, I’m also able to devour them. More and more, I’m able to read, which is like reuniting with my first love (lost for these many months). Books. Magazines. The daily newspaper. Words everywhere, enticing me to slip into another reality, into someone else’s story besides my own overly-medicalized and often dull one.
I’ve also regained my driving privileges, as long as I’m not having a vertigo episode, am not taking any medications that might make me loopy, and if the distance is short and the route familiar. Best yet is my increasing capacity to be the kind of mother to Andrew I’d like to be. I’m now able to read to him from chapter books; we draw together. A few days ago, we hiked up the steep hill behind our house. Although I sounded like a steam engine that should have been retired from use a few decades ago, I made it to the top—all while keeping up a narrative for Andrew about the two of us being medieval knights, scaling the terrifying–and heretofore unsummitted–“Dragon Mountain.” We were in search of these mythical beings. Luckily, the dragons we found were a mother/kid duo, and they were quite friendly. They weren’t even prone to fire-breathing (unless provoked) and were eager to join forces with us against the tyrants in the next valley over. So not only was I able to walk (at a sharp incline), I was able to use the story-telling part of my brain, which has too often been fogged with disease or drugs for the last couple of years.
I sometimes wake up now with energy and a sense of purpose. My vertigo/mind-splitting headaches don’t descend on me nearly as often (though the one I got yesterday trying to finish this post was a doozy). Days now pass between these episodes. I notice the house around me. I consider it a sign of progress that my family’s inevitable build-up of clutter thoroughly vexes me. I even catch myself re-washing the counters after Jay’s done the dishes. This is classic (and, I’m sure, very annoying) pre-2007 Rebecca behavior. I’m noticing the garden that Andrew planted with Connie, our in-home teacher and all-around life-saver. I worry about whether I’m watering it enough, or too much. A few months ago, I would have been too afraid to walk back to the garden area because of the unsteady walkway—and my unsteady gait. I see the weeds everywhere in our yard. Should I spend a day with the weed whacker? In addition to re-engaging with my home, I am beginning to do the same with friends, whose e-mails and calls and concern I have too often left unanswered because of bad health days or a general sense of being overwhelmed. But now, I feel like seeing friends. I’m returning e-mails with only a week or two of delay. On Sunday morning, I rise early with Andrew while Jay is off running dozens of miles in training for his November marathon. We make pancakes, read books, and tell stories.
In fact, it is my newfound wellness that has kept me from writing more than any other aspect of my life. With some energy, a day without a headache, and a thousand projects deferred, I am scattered and unfocused. Should I finally clean our truly horrid shower? Or work on my book project? Or write up my essay proposal for a magazine? Or cook dinner? Or visit with a friend? Or organize Andrew’s toy closet (also known as the “zone of death” to those who open the door without first being prepped for a deluge of hockey sticks, five massive bins of Legos, and seven thousand board games to come crashing on their heads)? Sometimes on “good” days, I expend more energy spinning from potential task to possible activity than on actually accomplishing something—like an entry for Chronic Town or a book chapter. Hence my silence online.
I should, however, reveal the other side of the ping pong game. Every other week is now known as “Mommy’s Chemo Week” to my family, and it isn’t fun—for any of us. Andrew loses the mother he remembers, the busy woman who actually smiles and has the time and energy to put him to bed, play endless games of Sorry with him, give him a bath, and talk to him about kindergarten and his upcoming tonsillectomy (now deferred for a couple more weeks because of a late spring cold he picked up). I think it is extra hard for him now that the real me has been resurfacing every other week. Jay loses his wife—a partner who shares meals with him, asks him questions about his day, shares some childcare responsibility, and tantalizes him with prospect of becoming well enough to travel, hike, and return our lives to the hemisphere of the normal. And I go through an unpleasant week and in the process lose every bit of my positive attitude about my emerging health. I fall into a deep, dark interior place, where I am sure that chemo will never end, that everyone loathes me for malingering, that the chemo will stop working, and that I won’t survive the week.
The kind and knowledgeable oncologist who oversees the administration of my Cytoxan warned me that drug’s effect were cumulative. In other words, the toxic crap is building up in my body. Every dose is a little harder, and lasts a little longer. For the first three days, I mainly deal with nausea and vomiting. I have medications that help a little, but I seem particularly prone to these symptoms. Even with the anti-nausea medications in my system, I routinely greet each of the first three or four post-chemo days with vomiting—even if it’s simply dry heaving. Try as hard as I can, I get dehydrated every week. If I drink gallons of water, I throw up gallons of water. By Thursday (I get chemo on Tuesdays), I’m dehydrated and sick enough that I have to go back in to the Cancer Treatment Center (CTC) for a couple liters of intravenous fluids and another round of intravenous anti-emetics (which work much better than pills). Friday is what I call a ledge day. I teeter between either needing more fluids (and perhaps having to “go in,” which is CTC speak for getting wheeled upstairs and getting admitted to the hospital) or getting over the hump. Usually it’s the latter. When I’ve recovered from the nausea and vomiting enough to notice the rest of my body, I despair at my fatigue. I sleep sixteen hours a day, and awake exhausted. I’ll drink some water, swallow some medication, and immediately fall asleep again. During my post-chemo weekend, I do nothing but sleep. It’s demoralizing. I’ll try to listen to a book on my iPod, but I usually manage only a few minutes before slipping back under the great grey veil of sleep. I’ll try to watch television with Jay, but I’m usually out before the opening credits have streamed by on the screen. I’ll try and be a good mother to Andrew. But the food smells involved in coming down for dinner make me head for the closest toilet. I’ll ask him to snuggle in bed with me and read, but turning the book pages begins to feel like a weight-lifting session. Before long, the words are dancing and spinning in front of my eyes. I now understand those sailors in Odysseus, who succumb to the sirens’ song and fall asleep at the helm. “Mooooommmy,” Andrew’s sharp and disapproving voice cuts through my own sirens’ tunes. “Wake up.” Not happening.
What concerns me more than my dehydration and my fatigue is my outlook. I wish I had a better attitude. I spend my post-chemo days alternating between inner drill sergeant and inner care-giver. I try to compare my chemo regimen with the training I used to do as a competitive cyclist. I tell myself I’m at mile 70 of a 100-mile race. I have six more long climbs, I tell myself, and a pack of women only a mile behind me, so suck it up and finish the race—with style. Or, I’ll think of the long back-country hiking trips Jay and I did a few years ago. I kept walking for at least twenty miles a day with a heavy pack on my back. Climb up to the campsite, I admonish myself. Surely, this is similar. The sports analogies haven’t worked yet. I want to quit and kvetch. So, I say positive affirmations. And I listen to positive affirmations on my iPod. These soothing soundtracks of healing words set to new age chimes and bells usually put me to sleep in five minutes. Awake again, I visualize myself in perfect health. I remind myself that I am getting well. I tell myself that my body needs to sleep, needs to vomit in order to process the medicines that will put me into remission. Then, I lecture myself on my outlook. I order myself to gut this out—only 6 more of the every-other week doses before I get re-evaluated and maybe drop to once every three weeks and then once every month and then—hopefully—once every never. “What the hell is wrong with you?” says the inner me that sounds uncannily like the sergeant in Full Metal Jacket: “Are you quitting on me? Well, are you? Then quit, you slimy fucking walrus-looking piece of shit! What is your major malfunction Private Stanfel?” When this fails to sustain me (gee, what a shock), I pray. I hold my thinking rock that I’ve used for concentration (usually in writing) ever since I found it on a New Zealand beach on a brilliantly sunny day eight years ago. I work Buddhist prayer beads and a rosary. I say Jewish prayers, Catholic prayers, and Buddhist mantras. And still, still, my chemo week ends with me feeling utterly destroyed—physically, emotionally, and spiritually. I get angry with myself. I have so much to be thankful for. I used to be known for my toughness. And now, I can’t take a little puking and fatigue? I’m so depressed and exhausted by the psychological warfare in my mind and the physical toll of the drugs that I feel too ashamed and too tired to talk to family or friends that call. I can’t express myself to Jay, so I leave half my life unexplained to him. Better to be alone with this I decide, than to allow good people to descend from the sunshine of the world into my dungeon of dark thoughts, shadows, and spiders.
By Monday—six days after chemo—I usually feel like sleeping for only thirteen hours. I force myself out of bed and marvel at the world around me. The poppies have exploded into life in our yard. I stumble to the back yard and find Connie’s garden. Somehow, the pea, bean, pumpkin, and other vegetable seeds have sprouted. Miraculously, they have converted water and air into living matter. The crab apple tree is heavy with blossoms. How did this happen? Just a few days ago, it looked dead, its branches denuded and lifeless. By the next day, Tuesday, I can once again appreciate the miracle that is taking place within me. Somehow, drugs so poisonous that the pharmacy staff handles them only with double layers of rubber gloves are curing me. I begin to feel alive again. I banish my depression and start bouncing from task to task during these six glorious days of returning health. Like the carrot seeds in the garden, I am slowly and determinedly pushing my way out of the compost and dirt and towards the light.
As the week progresses, I can feel the dread of my upcoming chemo stirring in my body like storm clouds heavy with rain massing on the horizon. I push the thoughts away, but my body senses the coming storm and by Monday, I feel heavy and weighted down with the knowledge of the next day’s treatment. You wouldn’t know any of this by looking at me or talking with me. I try, at all costs, to keep a positive attitude. The nurses at the CTC admire my good outlook. Friends think I am cheerfully counting down the every-other week chemo schedule like I’m a kid at school, checking off the weeks until summer vacation. And I am hopeful and cheerful—mostly. I keep a gratitude journal to remind me of all the positive things and people in my life. My list is long. And constant reminders of my many blessings surround me each day. Andrew is healthy and happy. The last time I got chemo, the chair next to me was occupied by a three-year old boy with cancer (he even had a port in his chest like mine to make intravenous drugs easy to administer). We have health insurance; Jay has work; our combined families help us out in myriad ways. We have good food on the table, friends at the ready if we need them. And, I am getting better.
On reflection—when I am neither being catapulted from the “health” side of the ping pong table to the “illness” side—I can understand my mood swings. The very fact that I dwell in two radically different worlds, that I am indeed catapulted from one side to the other, is discombobulating. And when I give myself some credit, I can recognize that chemo is physically difficult. Nearly a year of receiving these drugs has taken a toll on me. Expecting myself to chirp out hopeful sentiments is a high bar to clear when I am puking my guts up. Finally, there’s the fact that I have been fighting this disease for five years—taking a pharmacy’s worth of pills (many of them unpleasant) to curb the sarcoidosis’ spread. I am not a fresh recruit with extra energy going into battle against this disease with all my resources. I’m now a grizzled veteran on stop-loss orders with no certain discharge date. I started chemo exhausted, unable to walk steadily across my room, with the disease attacking a new organ or system every few months. It’s as if I started that bike race I visualize during chemo weeks after already riding five hundred miles.
I am tired. But I can do this. I think of the garden, of the seedlings growing taller and stronger, following the sun. I’m not sure what kind of attitude those plants have. Who knows if they are always joyful in their arduous process of coming to life of pushing out of their own dark caves? But coming to life they are. And that is what counts.