A Season in Hell (25 page)

I exploded. “What!” I cried. “Are you saying you think menopausal women are crazy? Is that what you’re implying? Are you really so stupid and inexperienced that you believe that?”

Doctor or no, he no doubt believed exactly that. He glanced at me in deep unease, even fear, and rushed from the room. (I had just validated his assumption.) My roommate turned to me a face smiling with gratitude. The next day, she spoke up to a doctor who was treating her superciliously.

I had been working all this while on
My Summer with George
, and while I was in the hospital in July 1995, I revised it, finishing the revision the day after I left. I went back to the Berkshires as soon as I could. Again, I was weak and needed help with carrying and lifting; again, I slowly grew stronger.

In New York, on an evening late in September, after my daughter and I had seen the play
Ecstasy
off Broadway, we walked to the corner for a cab, and I suddenly found myself lying on the sidewalk, on my back. People all around were alarmed, and helpful, especially the women, but thank heavens I had Jamie to see me home. The next day, I was all right but uneasy. I called Dr. Lieberman, the Sloan-Kettering neurologist, for an appointment. He ordered an MRI, which showed I had brain damage from the chemotherapy. Luckily, the damage was to my cerebellum, not to the cognitive portions of the brain, but it was irreversible, he said, and nothing could alleviate it.

I worried for a while, fearing that I might fall down when I was out alone, hating the thought that I might need a keeper to be with me at all times. But I have fallen only once since then. This marked the beginning of a severe deterioration in my walking ability: I am often dizzy and walk into walls; I often feel I will fall, and sometimes I do collapse. I need to sit down or rest briefly when I stand or walk. But I have not again blacked out during a fall.

I had no further health crises that year, although my urinary tract problems remained.

In January 1996, I flew down to Florida. Perhaps I was more ambitious than usual, or more energetic, but I have less help in Florida than anywhere else, and things are hard for me there. In any case, I realized after a time that my back was particularly painful. I ignored this, thinking each day that I had been too vigorous in swimming the day before, that I should not have carried that half-bushel of oranges up to the apartment. In late February, I flew to England to deliver the Oxford Amnesty Lecture at the Sheldonian Theatre, thrilled to speak in that historic hall. I spent some days in London seeing publishers. I stayed at my favorite British hotel, the Connaught, which is beautiful and luxurious, with a great dining room. In addition to its exquisite meals at lunch and dinner, it manages to deliver a perfect three-minute soft-boiled egg every morning—which as far as I am concerned is the real test of a hotel dining room.

By late March, I realized that the back pain had been particularly bad for a very long time, and I consulted my Florida doctor, who sent me for X-rays and a bone scan. I had suffered another compression fracture. The doctor sent me for physical therapy, but I was already being treated by an expert in craniosacral therapy, who managed to keep my pain tolerable; the supplementary traditional physiotherapy did not seem to have any added effect.

My urinary tract problems were growing ever more severe, and when I returned to New York, I again saw the new urologist. He performed a cystoscopy and found my bladder full of blood, but no sign of cancer. The next step was a CT scan, and, because I was staying in my Massachusetts house, I arranged to have it done at a hospital in Canaan, Connecticut. But the doctor had not specified whether iodine was to be injected to provide contrast in the X-ray, and the technician was afraid to proceed. Not wholly trusting the urologist (who had messed up arrangements for several previous appointments), I had the technician call Edie, who absolutely forbade the use of iodine. I went home. There was no CT scan, and no further tests were done. They—Edie; the nephrologist, Dr. Glabman; and the new urologist—had ruled out cancer to their satisfaction. Edie did not want me to have iodine (which harms the kidneys and, in my case, could be fatal), so a CT scan would be of minimal use. They concluded finally that my urinary tract had been damaged by chemotherapy, that there was nothing to be done, and I would simply have to live with the consequences. This was becoming the standard answer to all my problems.

Indeed, that is the diagnosis of most of my present medical complaints. Happily, the medication to dissolve kidney stones was effective and within three months had eradicated them, as a new sonogram and X-ray showed. Once they were gone, Edie made sure I was sterile (by prescribing a final course of antibiotics and testing the urine again to make sure it was infection-free). Once sterile and free of kidney stones, I had a chance of remaining free of infection. I have not had a kidney infection since and have not spent a night (although I have spent days) in the hospital in a year and a half. Consequently, I have not suffered periods of regressive enervation. I am grateful for the respite but do not consider that this means I am “better” or will recover. My walking grows steadily worse as the neuropathy progresses up my feet; the dizziness from my brain damage probably has a similar prognosis, since the effects of toxins and of radiation continue in the body for the rest of one’s life.

With concentration, I can walk straight. When, distracted, I fail to concentrate on walking or standing—as happens at large parties, for instance—I become weak and dizzy and feel I will fall down. I dread that someday I may not be able to walk unaided, but that is not predictable, and I refuse to spend good years of life thinking about wretched things that may not happen. Regular Feldenkrais and craniosacral therapy for my back and arm problems enable me to stand a wee bit straighter than I did and to move my arms a bit more widely. I even have moments without pain. My heart has improved a tiny bit, as has my kidney function. The latter things have happened automatically; they are signs of the body’s miraculous ability to heal itself.

A
FTER ALL THE UPS
and downs of 1992, 1993, 1994, and 1995, after the heart-clutching terrors, the flashes of exaltation when I thought I was recovering, and the inevitable disappointments that followed, I reached a plateau of serenity. Years of pain, dread, and severe illness smoothed out into a quiet state of mild impairment. Nineteen ninety-six was the first year since my diagnosis in 1992 in which I was not hospitalized. Since each hospitalization had cast me back into enervation and muscle weakness, I could now stop this regression and work on growing steadily stronger. Of course, I did not know at the beginning of the year what it would prove to be like, and there were many episodes of sudden bleeding, or sharp pain that made me clutch in fear.

At present, I feel relatively well. My back aches almost constantly but not severely, except when it is tired; a regimen of medications and a low-protein diet have kept my kidneys quiet; the urinary tract problems remain, and I am bothered every hour and never get a full night’s sleep, but now that I know they do not indicate cancer, they do not worry me.

A few months ago, I read Reynolds Price’s memoir of his ordeal with cancer,
A Whole New Life
(1995). Price had cancer of the spine and received considerable radiation. As a result, he is now a paraplegic. He writes that severe spinal injury almost always damages the nerves controlling bladder function. Most para- and quadriplegics have trouble emptying their bladders; they often lose control of their urination and develop urinary tract infections. For months, I believed that my urinary problems, which did not begin until 1995, were a late result of radiation. Price had another problem I share: he calls it “storms” in the nerves of his back and legs, resembling an immense amplification of the pins-and-needles sensation. I have had what I always called “hard pins-and-needles” across my midriff and back since I awoke from the coma. It can be very strong and unpleasant, and arrives suddenly when I stretch an arm farther than it wants to go or move my torso quickly. My craniosacral therapist, Susan Trider, told me several years ago that as she worked over my body she felt a strange prickling sensation—although I had never told her I suffered from it. Her efforts paid off, and the sensation is much reduced now.

My walking and balance have grown considerably worse over time, but I do not fall regularly. And since I have been treated by a naturopath, Dr. Ember Carianna, and by Susan Trider (both in Florida), precisely to counteract the effects of radiation and chemotherapy, I have been walking better. Susan teaches a visualization in which the patient superimposes the figure 8 on the part of the body that is troubled. She has an original theory about this figure, about which she is preparing a thesis. The figure 8, which is of course the symbol for infinity and the shape of the Möbius strip, is also a “natural” motion: if one closes one’s eyes while standing up, the body automatically moves in a figure 8 pattern. I imagine it whirling through my cerebellum, my spinal disks, my bladder, and other hurt parts of my body. Imagining it swirling around me as I walk down halls seems to keep me straighter. One of Susan’s patients, a paraplegic, began to move after a long period of doing this visualization. Susan has for several years given me craniosacral treatments when I am in Florida. The rest of the therapy—visualization of 8s, and Dr. Carianna’s herbal and homeopathic remedies—is too recent for me to be able to say much beyond the fact that it
has
helped me in only a couple of months.

My present state is merely my present state—it may change tomorrow, and probably for the worse. Indeed, my urinary problems did worsen during a trip to England this past June, and when I returned, I called Edie to ask her to prescribe a medication that had helped a professional woman golfer with interstitial cystitis. Instead she sent me to Dr. Suzanne Frye, a urologist, who expects to relieve my symptoms through a hospital procedure that will not require an overnight stay. I trust her because she performed a cystoscopy on me in her office, which I barely felt; the same procedure, performed by my last urologist, had me screaming on the table. Disgusted, he told me the problem was that I was too small. But the problem was his ignorance of female bodies. I think male urologists should hang out shingles reading “Practice Limited to Men Only”; they should not treat patients whose bodies they do not comprehend, charging money, causing pain, and leaving them dangling. Since I wrote this paragraph, Dr. Frye has given me a series of treatments which have much alleviated my symptoms. I now waken only twice or three times a night, and hope for even more improvement in the future. In addition, acupuncture has increased the sensation in my feet.

I was recently diagnosed with diabetes. Since I am not overweight, do not often eat sweets, and have no diabetes in my family line, I am bewildered by this. I must limit even further my already limited diet and stick needles into myself twice a day every other day to keep track of my blood sugar. Other than that, the diabetes is of no concern. It was just one more blow to a being nearly numb to them.

Just about every system in my body has been damaged to some degree by chemotherapy or radiation. I take fourteen prescription medications every day of my life, some twice a day; and five more on occasion. I spend over a thousand dollars a month on medications, not covered by insurance. I spend more than half that amount each month on physical therapy, which I will probably need for the rest of my life. Nor is this covered by insurance. The natural remedies are cheaper: I take six of these at present. The only problem is that I take medications all day long.

I look like someone who has been sick. I aged greatly during my illness: my skin wrinkled when I lost weight and from the drying out of my body by chemotherapy; some of this faded, but some lasts. Strangers seem to recognize simply by glancing at me that I am in some way impaired; they often reach out a hand to help me. This is both gratifying and upsetting. It always makes me happy when people act helpful, kind, altruistic; but on the other hand, I dislike being continually reminded of how disabled I appear. When walking, I like to rest my arm on another’s arm, for the support, not of strength, but of steadiness. I know I walk straighter if I walk with someone else. But often the people holding my arm warn me about a step coming up, and I want to snarl (like my grouchy mother in her old age), “I’m dizzy and unstable, not blind!” Sometimes I do.

It has been rumored that chemotherapy destroys one’s sexual drive, and certainly that seems to be the case with me. I had already passed the time of life in which desire is fierce, most compelling (which is the best reason I know for acting on desire when you feel it: it is not a permanent part of the somatopsychic complex). But I feel it not at all anymore. Of course, nothing has provoked it recently—and at my age, it takes something powerful to provoke desire. So I can’t be sure. But I am glad I let myself experience sex widely and richly while I could.

It is fortunate that I was always a sedentary person, that the activities I love are sedentary. I like to write, read, paint, play the piano, talk to friends—all of which are done sitting down. Suppose I’d been a professional golfer? Or a mountain climber? But if I had been, my leg muscles would be stronger, and different things would be wrong with me now. I’m convinced of this: what goes first in illness are the systems that were weak before. My walk was always unsteady, even when I was healthy, because I exercised my legs insufficiently as a child; kidney problems are congenital in my maternal family.

Despite everything, I retain a kind of vigor, an enthusiasm and a passion that do not diminish, even when I wonder where it is bubbling up from. This means I can have fun. I look forward to and enjoy almost everything I do in the course of a day. The things I find unpleasant (most doctors’ visits—but not those to Edie Langner—waiting in a doctor’s office or hospital lab, being caught in New York City traffic jams, for example) are unavoidable and happen to people who are not sick. But my years of trekking in the elephant dung have mostly ended.