Saturday, January 22, 2011

Only the lucky

In the early 1980s, I worked in a business that did small odd jobs. One day the phone rang. A woman said she needed help sorting out and disposing of her late husband’s clothes and possessions.

“I have to tell you,” she said, “he had AIDS. I’ve called about a dozen other places, and no one wants to come out here because they’re afraid of catching it.”

I took a deep breath. One arm instinctively cradled my newly pregnant belly.

AIDS had just exploded into the national consciousness; in fact, the term “AIDS” had been coined only months before. I didn’t know much about it. Sure, I had read that it could only be transmitted through exchange of bodily fluids, but it was just so new – what if there were some ways of catching it that scientists hadn’t discovered yet?

I wanted to do the compassionate thing. But if a dozen other people were afraid of infection...all my sheep-like instincts were kicking in. And there was the baby to think of.

“I’m sorry,” I said. “I’m really sorry. But I’m pregnant and I’m just afraid of taking any extra risks.”

That’s stayed with me all these years because I’m ashamed that my knee-jerk, self-protective prejudice caused me to spurn someone in need.

A similar visceral reaction comes up now when I meet someone with Stage IV breast cancer. Obviously I know beyond a shadow of a doubt that cancer is not “catching.” Yet a few months ago, at an art therapy workshop for cancer patients, when the woman next to me said she had breast cancer that had metastasized to her jaw, I had to grip my chair to keep from getting up. I wanted to put my hands over my ears and rock back and forth singing la la la la to keep from hearing about it. I couldn’t look at her.

Other kinds of cancer don’t freak me out in the same way. It’s the folks who started out with what I have, and now are at the next stage, the one where there is no subsequent stage. I'm scared that that could be my future, so I don't want to know about it.

And evidently some folks at that stage feel reticent in the other direction.

The New York Times ran a story last week about a woman whose breast cancer had metastasized to her spine. She couldn’t bring herself to tell her diagnosis to her breast-cancer support group, all women with early-stage disease, because she didn’t want to scare them. The article said that 150,000 Americans have metastatic breast cancer; some can live for years if their doctors hit upon the right treatment, although the median life expectancy at that stage is 26 months.

(A note about terminology: As I’ve written on here, my cancer metastasized, or spread, to my under-arm lymph nodes. While the number of lymph nodes involved put me at Stage III, it is still considered “localized” breast cancer. Breast cancer that spreads elsewhere in the body beyond the breast or under-arm nodes is Stage IV disease, “metastatic breast cancer.” At that stage it is considered treatable but not curable.)

My chemo roommate yesterday was a chatty older woman I’ll call Madge. After introducing ourselves, we exchanged the standard question, “So what are you in here for?”

(It sounds just like what you’d ask your cell-mate in jail. I always have to restrain myself from saying, “Oh, I knocked over a liquor store, but it was my first offense.”)

“I have breast cancer,” she said.

“Me too.”

“Everyone said I was so lucky,” she went on. “I had the best possible kind of breast cancer, it was just a teeny-tiny tumor that they discovered almost by accident; it hadn’t spread or anything; they found it nice and early.”

“Oh, that’s great.”

“But a year later, it metastasized to my lungs and liver. That was five years ago. I practically live here at the cancer center now.”

“Wow, I’m really sorry to hear that,” I said, groping for the right words. “I hope you don’t mind me saying this, but you look great.”

And she did. She appeared a decade younger than her age of 68, had a full head of her own hair (I can now spot a wig, even a pricey one, from across the room), her face was a pleasant pink, and she seemed relaxed and comfortable.

“Well, I had almost a year of intensive chemotherapy and now I come in every three weeks for this miracle drug Herceptin; I’m lucky they started me on it early before it was a standard treatment for this kind of cancer.”

I hadn’t known someone could live five years with cancer in their lungs. And she didn’t seem in any imminent danger.

“Do you mind telling me how they found out it had spread?” I asked.

“Well, I had a blood test for tumor markers and they were elevated, so then I had a body scan and my lungs and liver lit up. I had a biopsy on my liver just to confirm it, but they never cut into my lungs. They started me right away on heavy-duty chemo, and it shrunk the tumors.”

Just then two hospital chaplains arrived to visit Madge, which implied that maybe things weren’t quite as rosy as I’d been imagining. My chemo nurse came in to get me set up and a medical tech tried to squeeze in to drop off supplies, frowning about how hard it was to navigate our clown-car of a room, which now had seven people crammed into a 10-by-10 space already dominated by the two big Barcaloungers, the three guest chairs (I had a friend there too), the hulking IV pumps, the trash can, the medical-waste disposal can, the counter/cabinets and the blood-pressure machine.

Soon the Benadryl sent me into la-la land, and I drifted off to sleep.

Madge was just getting ready to leave when I woke up, but she settled back down to chat a little more.

“I’ve been coming here so many years, and I’ve met so many great people,” she said. “Of course, so many of them aren’t here anymore.”

That sounded like an avenue I might not want to pursue, but I still had to ask. “You mean because they’re through with treatment?”

“No, I mean they passed on. I know I’m one of the lucky ones. I’ll be coming here forever and ever, but it’s better than the alternative.”

Saturday, January 8, 2011

Benadryl days, steroid nights

My romance with IV Benadryl was short-lived. After my first faaaar out experience, it now gives me about two minutes of pleasant floating feelings, followed by several hours of extreme grogginess. Not only that, I can feel IQ points evaporating by the minute just like the hero at the end of “Flowers for Algernon.”

At Friday’s chemo, I scarfed up a People magazine from the waiting room, but once the Benadryl kicked in, it was too intellectually challenging. Even the pictures confused me as I don’t recognize any of those reality “stars.”

“This is too hard,” I complained, showing it to Mark.

He didn’t really grasp the situation.

“Here, I can read aloud to you from this book of Chekhov short stories,” he said, not realizing that “Hop on Pop” would have been more appropriate right then.

I wanted to fire off a witty come-back, or at least a lame joke like, “Sure, honey, actually Dostoevsky would be even better,” but I couldn’t remember that big long Russian name.

Instead I stared at him vacantly and eventually slurred out, “Check-off what?” an even lamer joke, and drifted off into slumber land.

When it was time to go home, I found that I’d lost even more English-language skills.

“You car,” I said, pointing at Mark. “Me pee.”

Luckily he was able to deduce that meant he should go retrieve the car from the valet (a fabulous perk at the cancer center: free valet parking) while I visited the bathroom.

At home, it was more couch time with kitties. I wonder if I could train them to massage my aura?

Then, at 3 am, the Dexamethasone, a steroid also delivered by IV during chemo, kicked in and I was fully awake, ready to spring into action on the domestic frontier like the crazed offspring of The Flash and Martha Stewart. Mark has an inconvenient attachment to sleeping at this hour, so I have to tiptoe as I plunge maniacally into my improvement projects.

Neither of these drugs are actually chemotherapy per se; they are administered to prevent chemo side effects. Benadryl forestalls allergic reactions to the Taxol; Dexamethasone prevents nausea.

If only I could switch the time when each one takes effect; days with steroid-fueled energy and nights with Benadryl drowsiness would be perfect.

Thursday, January 6, 2011

Stranger in a strange land

The bizarre parallel universe of Having Cancer is marked by different customs in speech, dress and manners. Sometimes it causes cross-cultural issues when I travel back to the land of the healthy.

For instance, every nurse, doctor, nutritionist and phlebotomist I encounter at the cancer center makes detailed inquires about my bathroom activities, leading me to feel that the topic must be intensely fascinating to others. When people at holiday parties asked how I'm doing, I had to restrain myself from proudly telling them that my elimination continues to be exemplary.

On the bright side, the denizens of the cancerverse tell me over and again how young I am. Being immersed in a typical middle-aged struggle with sun damage and gravity, I was initially flattered -- until I realized that being "young" and having cancer is a strike against me. Cancer in the young is almost always more aggressive.

Unlike most chemo patients, I haven't gone completely bald, but lost about three-quarters of my hair, evenly dispersed. My head looks like a newly planted field; each square inch of scalp has perhaps two dozen inch-long hairs that wave valiantly in the breeze, a total Tweety bird look. Other chemo patients gush over how much hair I have, as if my tresses were as long and lustrous as those of Angelina Jolie or Julia Roberts. In the real world, people avert their eyes as if from a disaster scene when a hot flash compels me to whip off my hat in a store or other public place.

Mark and I found ourselves recently at the home of a type of faith healer, surrounded by other cancer patients. It was like Lourdes, but tres Marin. I wished we had worn flowing fair-trade batik garments. I wanted to tell everyone we were from Berkeley to claim some kind of crunchy cred.

I was almost embarrassed when we went around the room for introductions; sure, I have Stage III cancer, but I was in far better shape than most of these poor souls, many of whom were Stage IV.

One emaciated man, who had a type of cancer we'd never heard of, lay on the couch the entire time, occasionally moaning; he recoiled from touch as though it burned. Some of the patients were themselves medical professionals, including a doctor with Stage IV pancreatic cancer. My dad died of pancreatic cancer four months after diagnosis; among cancers, it is one of the quickest to kill. This woman, who looked barely 35, said she had tremendous faith that our host could heal her so she could continue to raise her 3-year-old and 18-month-old. Nothing, nothing seems more tragic to me than a mother of young children losing her life; I jammed my fist into my mouth and bit down hard to keep from sobbing when she told her story.

The healer, a warm and charismatic man with a good sense of humor, complimented Mark on his radiant aura.

I was jealous. In perhaps not my finest wifely moment, on the way home I said, "You know, honey, it's easy to have the prettiest aura in the room when everyone else there has Stage III or Stage IV cancer."

Yet, cynical journalist that I am, I do plan to submit myself to the healer’s ministrations. As I understand it, he will massage my aura. No pills, potions or needles are involved. I have nothing to lose but a little time and money, and really, it can't hurt. Considering that my conventional Western medicine treatment can, in fact, hurt (I have signed lengthy disclosures to that effect) -- not just with the temporary side-effects but with long-term significant bodily damage -- a little aura massage might do me a world of good.