What Happened With the Cancer

Now I’ve got to figure out which people I want to start with. Maybe my mother’s battle with Guillain-Barre disease when she was seventeen. Her symptoms seemed a little like polio, and her doctor put her in an iron lung. She somehow communicated that she wondered if Dr. Salk could help her. They explained that it wasn’t polio. What they didn’t explain was that her chances were not good. But the doctor and my grandmother were friends, and he stayed with my mother and did everything he could, just couldn’t face Grandma with failure. Mom had an operation on the area around her throat, where they removed two cubic inches of scar tissue. She still has the tiny scar 60 years later. But she can breathe.

Before Mom, even, there was Grandma. She had such debilitating arthritis that she ruined her stomach taking aspirin. Then her neck vertebrae became brittle. The doctor did operations to use a piece of her hip bone to create another vertebra. Only after the operations did Grandma ask about the other patients who’d received the treatment and their rate of success. She was told that she was the first one. She lived to be 94.

All that to say I have a fundamental belief that doctors can do amazing things, and that the women in my family are strong.

When I was diagnosed with cervical cancer, my first gynecologist had treated me with half-measures, opting to freeze the abnormal cells rather than surgically remove them. That, in his mind, was a good thing, since it would save me money. He was betting that I was too young (29) to develop cancer. He was wrong. His name is/was McNutt. I’m not sure he’s still alive. Haven’t wanted to know. He gave me my diagnosis on Valentine’s Day (bastard) and set up an appointment with a female oncologist at NEMC. For that I was pleased. But when I went to the hospital, it turned out that she was on vacation, so I saw Dr. Harrison Ball, the head of the GYN ONC department. I accepted this upgrade happily enough, even if he was a man. His first exam told him I needed exploratory surgery right away. I got things together, and within a week, I was in the hospital. 

That week is a blur for me thirty years later. Oh, spoiler alert: I lived. My girlfriend and I must have done some juggling, figuring out how we were going to manage financially. We didn't have savings or a contingency plan. She delivered newspapers. I was working part time as a child care worker at a school/home for developmentally disabled, emotionally disturbed teenage girls. They loved me. I had worked there full time until I burned out and wanted to hurt a child who was in my face, kicking, spitting, swearing. They told me I'd lasted longer than expected in such a high stress job. But when I went back as a substitute six months later, the kids were little angels with me. I was like a visiting auntie, not the usual stern taskmistress. Since the kids were like little petri dishes, the staff was constantly getting sick, and I had nearly as many shifts as when I'd been full-time. But I had to tell them I was going into the hospital, and that the future was uncertain for me. It turned out that I couldn't continue on there because with my newly compromised immune system, and one student who was a biter and scratcher who carried Hepatitis C, we couldn't risk it. Losing the connection with these difficult but still lovable kids was terrible. I went from strong and capable to vulnerable and fragile.

As I came to the morning after the operation, I was surrounded by the doctor and several interns or residents. It’s a teaching hospital, NEMC. The faces around me were serious. Dr. Ball told me they’d found a fast-growing tumor and some microscopic cells in the lymph nodes around my aorta. I asked what my prognosis was, and he hemmed and hawed. After a couple of non-answers, I got it out of him that my chances were about 16% to survive after three years. With treatment, that is. Now, it bears mentioning that I was on pain killers at the time. But I told them that that was wonderful, since I live in Provincetown, where people with AIDS were living with virtually no chance offered them. So that 16% seemed like a piece of cake. Yeah, I know. Sounds delusional. But I think brute force and ignorance carried me.

Another thing that carried me was the work I’d done training to be a caregiver for the AIDS Support Group during the height of the epidemic. There were workshops being offered teaching meditation, visualization and general good practices for self-healing. I went to as many of these as I could, though the position I saw myself filling was as a driver to Boston medical appointments. Sadly, I never got to the point of hopping behind the wheel, since I got diagnosed with my own challenge and became immune compromised. This always makes me take a deep, sad breath. There was so much that needed to be done, and I wasn’t able to do it, short of buying the absolutely marvelous Swim For Life tee-shirts produced by local artists every year for the big September event. Yeah, and I regretted being unable to make that 1 1/4 mile swim across the harbor to raise money for the Support Group. Now I’m not considering it because of the sharks.

Oh, and how did I come to be diagnosed in the first place? I was having regular pap smears every year, but about the time I hit 27 or 28 my PMS was through the roof. I went to Dr. McNutt (what is it with names like McNutt and Ball for gynecologists?) for hormone adjustments and saw him every three or four months. I was taking care of business. This is good, since I’d been to the point of throwing crockery at the walls. Never at a person, I insist. So when the cancer emerged, we were aware of it right away. Whew.

I live in Provincetown, and New England Medical Center is in Boston, three hours’ drive away. Dr. Ball connected me with a radiologist at the hospital in Hyannis to make the commute to treatments more bearable. I went for an exam and interview where the doctor used a too-big speculum and was somewhat ham-handed. During the interview, he wouldn't meet my eye, and told me that the treatment might not be the best option for me. I asked him what would be better, a problematic treatment and low chances, or no treatment and pretty much certain death. I was ticked off. He had a brand new radiation machine, and I think he didn't want to mess up his statistics right out of the gate. I told him thanks, but no thanks. I went back to NEMC to a wonderful radiologist, Linda Hunt Bornstein, who had confidence that she could help me, and we began working together. I needed to stay in Boston for six weeks of radiation treatments, five days a week. 

Mom and Dad helped me afford a little apartment near the hospital. It was a perfectly fine apartment, but after just a couple of radiation treatments, I could barely stand the smell of the bug spray the property management company used. Then there were the pets. We had a dog and a couple of cats. For some reason my girlfriend wanted me to take care of them in Boston, though the dog was really hers. I was a wimp about it and took the pets. They and their food added more delightful smells to my list of things to hate. I don't honestly know what she was thinking, setting me up with the animals. Maybe she wanted me to have a connection to life. Or maybe she just had no empathy, and didn't think about how difficult it would be for me. She wasn't, in hindsight, a very pleasant person. I don't believe anybody deserves to have crockery thrown near them, but the combination of that particular woman and my raging PMS wasn't good. Later, a little after my treatments, she developed ovarian cysts and needed surgery herself. We were both stressed by the trauma to our reproductive systems. I think our emotions were dramatic and out of control. We split up twice during this time, despite the fact that neither of us could afford to do so financially. But there just wasn't enough love to go around. Most couples get to alternate being well and unwell. We couldn't.

The walk to the hospital was about a block and a half, and once inside the building, it was about as far again. The distance stretched out nightmare-long as I trudged to the basement radiology department. Everything exhausted me. Between the hospital and the apartment stood the Schubert Theater, with a huge billboard advertising Les Miserables. And we were so near Chinatown. I looked forward to going to the play and taking advantage of all that Chinese food. But the 45 seconds of radiation I got every day had other plans for me. I began by having violent runs, the radiation covering much of my abdomen. These never left me. Thirty years later, I still take medicine to deal with that. Also, after the third treatment I went into menopause, with hot flashes that lasted 23 years. I was very tired. I could not stay up late enough to see the play, and though I confined my diet to pretty much all white food, I couldn’t have made it through Les Mis without frequent bathroom breaks. The dietitian told me to stop eating any fat or fiber. I thought this was an exaggeration. It wasn’t. So, no Chinese food for me.

Every day, I'd tromp over to the radiation department, take off all of my clothes and put on a johnny. Then I'd hop up onto a high, narrow bench where a tech would drape my lower body and raise the johnny to uncover my abdomen with its four pinpoint tattoos that they'd use to register just where the x-rays would go. It was dim in the room, and into the acoustic tile of the ceiling there was cut a little cross-shaped hole through which a red light shone down on me. That was disturbing enough. Then the tech would slide a template made of a six inch thick slab of lead into the machine suspended over me. It was there to mask out the parts the x-rays shouldn't go. The templates for various patients were leaned up against the wall on the floor, and some were half an inch thick, two inches, one inch. It terrified me that the one they used for me was the thickest. They radiated my entire abdomen (minus the parts the template covered) to attack the cells that had metastasized. The x-ray machine was the size of a small bus, and it rotated around me very quietly, very menacingly.
While I was being nuked, I visualized tiny little mosquito-sized beings of golden light, each armed with a little sieve. They'd fly down to me and scoop out the cancer cells, then take them away to feed them to some creature who could benefit from them.

While I was pretty much on my own in Boston, my sister-in-law, Julie was studying veterinary medicine at Tufts nearby. She was so kind, volunteering to come sit with me at the apartment. She'd break out her books, and I'd loll around, running back and forth to the bathroom, to the couch, to the bed. She tried to get me to eat. I had no appetite, and lost 15 pounds in six weeks. Near the end of the treatment cycle, I remember being so weak I nearly collapsed in the apartment's foyer. The black and white checked floor tiles skewed sickeningly as I grabbed the door frame. I believe the doctors gave me a long weekend back home in Provincetown for a chance to recover after that. The smell of the good, fresh Cape Cod air was heavenly after the miasma in Boston.

The last full-time job I had before (or while) becoming sick was as a beach grass planter. No, it’s not like I was a piece of pottery with an artful arrangement of grass. I planted beach grass out in the dunes of the National Seashore. Twenty or so of us would go out every day at about 8:00, haul ourselves into the back of a pickup truck with the air let out of its tires for traction in the sand, and bump and shimmy our way out to the day’s location. There, we’d see a bare tract of sandy ground and a single port-o-potty. That was our office. The job was to put three shoots of beach grass into a hole eight inches deep and eighteen inches away from the last hole, set diagonally apart. Then we’d stomp the hole shut. There was no room for error, as the Seashore representative would sometimes come by and measure. If conditions were not perfect for setting up erosion control, out would come the grass, and we’d be assigned to fix it. That didn’t make the boss happy. But he was a good boss, and we didn’t have to re-do much at all.

The job was hard, all bending and straightening, all day long. I got stronger. The weather was mostly good, as it was autumn. But there were days when our rain gear was all we had for shelter, and unless it was a deluge, we worked through it. Wet sand actually had a better consistency to work with than dry. It held its shape better, and was easier to walk through. And when it wasn’t raining, oh, the beauty all around us! We got to see the sky go through all its changes every day for two, maybe three months. It was glorious.

The people I worked with there were a great assortment of Outer Cape folks. There was a fellow who was very hyperactive, possibly somewhere near mentally ill. He was well-adapted to the work, though. There were fishermen between lobstering and tuna runs. A couple of young men who seemed likely to be living better through chemistry would forget to make themselves lunch at times. The first day, we were told we’d have a break at 10:30, another at lunch and so on. We all ate every bit of our lunches at the first break. One woman showed up every day in perfect makeup and a gorgeous manicure. She favored bright red lips and nails. Another thing she did was bring thermoses full of pastas and salads to share, using us as guinea pigs. She later opened a restaurant, and her salad bar offerings were eerily familiar. But at the time, we were only grateful for her generosity, especially those young druggies.

During that time, I developed my first and only nut-brown tan. It went from my wrists to my fingertips, and from my neck up. Quite the look.

When I began taking care of business, filling out a power of attorney and making my will, I also decided that when I die, I’d like to be cremated, my ashes sprinkled over Oh My God Hill, or maybe in the Valley of the Dolls, two locations we’d drive through on our way to work in the dunes. The first, a really steep dune, the second, a spot where rest the ashes of many an AIDS victim. My survivors would have to take a trip with Art’s Dune Tours, the only company authorized to carry people there. At the time I wrote the will, I had virtually no assets, but I was told to write it anyway. You never knew. All I knew was that, at 29, the prospect of landing in the Valley was very real.

As I began my surgery and radiation treatments, I began seeing a therapist who soon retired and passed me on to another colleague. They were circumspect, but I got the strong impression from them both that my first doctor had been negligent, and that he’d done similarly unfortunate work on other women. I know now they were taking a professional risk, and am grateful that they did. I talked with a lawyer, who said I had a strong case. As I thought it over, I asked my good friend and psychic teacher what she thought. Quan Yin spoke through her, saying it was not good to sue. I thought about it some more, and the next week as I listened to Quan Yin again, she said that though it wasn’t good to sue, it was OK to settle. It was partly for myself that I considered these options, and partly that I couldn’t stand the thought that this doctor could wreck some other woman’s life. So I took the doctor to court. Also during this time, I spoke with my mother about it, and she said, 'We don't sue.' This was one of those times when I discovered that she and I have very different takes on the world. I told her that maybe she didn't sue, but I sure as hell would. It was bittersweet, my feeling some of my own strength, and her lack of moral support.

We got through the first phase of the trial, with me telling my story. The lawyer got me to cry, which is a minor miracle. I rarely do. After this, we took a break, and the doctor’s lawyer said the insurance company wanted to settle for a certain amount that was maybe half to a quarter of what we thought the case was worth. He advised me to take it. I was worked up after telling my story, and refused the offer, saying we could go back in and continue with the trial. We did. Then at another break, maybe for lunch, the offer came in for another amount, and my lawyer strongly advised me to take it. I did. It wasn’t the dramatic sum I’d hoped for, but I trusted her. Later, as things were winding up, she told me that the informal word she got from the jury was that they’d been more on the side of the doctor. Quan Yin was right. It was better to settle. I bought a house and a car.