Monday, August 29, 2011

Me and Brigitte Bardot

Where have I been?

Sorry, dear readers, I let the blog slip away as part of my determination to shed my persona as a cancer patient.

But like it or not, I still am and always will be a cancer patient, albeit not now (and hopefully never again) one in active treatment. I still go to the cancer center at least once a month for shots, blood tests and/or checkups. But it's like returning to your elementary school; it all seems so long ago and far away that I was a regular part of that world. I see the bald people in the waiting room and my chin thrusts up as I differentiate myself -- I have hair, therefore I am "cured."

Everyone wants so much for me to say that I am cured, in remission, totally done with cancer. No one wants that to be true more than I do. But I'm superstitious. And technically there's no clear way to say that I'm cured, although once five years pass cancer-free, I'd be willing to say that this episode may be done.

I feel like someone living in a witness protection program. I've re-established the routines of my life and returned to work full time. But part of me is always waiting for the knock on the door that could catapult me back into the cancerverse.

As I understand it, the detectable cancer was cut out of my body in two surgeries; one for the breast, one for the lymph nodes. All those many months of treatment were to zap any undetectable cancer -- microscopic cells that one day might colonize in my bones, brain, lungs or liver. But since the treatment targeted something undetectable, it's not possible to measure its effectiveness. As a cancer friend says, "There's no way to know for sure that the treatment worked until you die of something else."

Really I'm not that grim about it. I've resolutely turned my back on the big/not so big C. I feel pretty good except for creeping exhaustion.

My hair is springing back with the kind of cute little curls I'd always wished for. About two-thirds of patients get "chemo curl." Eventually it will grow out, but for now I'm enjoying it.

Dolly has emerged from all these months of treatment looking, dare I say, fabulous. The radiation burn turned into a killer tan, as if I'd spent the last year lounging topless (or rather half topless) on the sands of Saint Tropez instead of being sequentially carved, poisoned and burned. Poor Plain Jane on the other side has clearly spent her whole life where the sun don't shine. Radiation also caused some edema; the result is a startlingly youthful, fuller-figured Dolly with just that one cute dimple where the surgeon wielded her scalpel. It's as if I'd had Brigitte Bardot's boob transplanted onto my chest.

Thursday, May 26, 2011

Radiation: Feeling the burn

Once in my hippie-dippie youth, I went on a kind of vision-quest retreat, spending a day or two in solitude in an expansive verdant meadow in the countryside. I romped, I frolicked, I slept under the stars, I sunbathed topless. I was one with nature.

When I returned to civilization, it soon became apparent -– painfully so -- that city goils need to watch their step around Mother Nature. I'd spent some of that time tumbling through fields of poison ivy. My poor breasts were covered with raised red welts that I desperately tried not to scratch.

Four weeks in, radiation produced a similar result. My right breast and the surrounding terrain – up past my collarbone and over to my underarm -- looked like those magazines ads about the heartbreak of psoriasis.

After everything she’s put me through, I just didn’t have it in me to be mad at poor Dolly, who was paying quite a price for the sins of having some cells run amok.

When the radiation burns started to emerge, the radiation techs said, “You aren’t still wearing a bra, are you?”

That sounded unthinkable. “I can’t go to work without a bra.”

By the next day, when I tried to put on a bra and cried out involuntarily, I was a convert. My new wardrobe: Black shirts with oversized jackets. And even putting on the shirts was wince-inducing.

My final two weeks of radiation were spent doing everything verrrrrrrrrrrrrrrryy gingerly. I had a cupboard full of creams and salves that provided some temporary relief.

The treatments themselves were tedious but mercifully quick. The techs were all friendly and kind. The main thing they wanted was for me to be ultra passive, letting them arrange my body in the identical position every time. To make sure Dolly was positioned correctly, they devised a little sling made out of bubble wrap and tape. That sling was as key to the treatment as the linear accelerator, a super high tech machine that must cost hundreds of thousands of dollars.

On the final day of radiation, the techs gave me a certificate they'd all signed, congratulating me on making it through with with my good cheer, if not my skin, intact. I hadn't felt so proud since my preschool graduation.

Monday, March 28, 2011

Zip zap zip

My radiation simulation – a kind of dress rehearsal for radiation – involved five technicians hovering around my inert, topless body and taking turns poking and prodding me into position on the un-comfy metal table, while urging me to hold still and lay heavy. Their multicultural combo of accents, the many monitors and hulking high-tech equipment, and the general futuristic vibe made me feel as if I were guest starring on an episode of Star Trek.

I certainly have the hair-do for it.

At one point, a Russian man and a Chinese woman stood on each side of me, both scribbling on my chest with their special medical markers and reciting numbers that seemed nonsensical to me: 84, 23, 17 (I wanted to pipe up, “Hut!”). Now I felt as if I were a disputed Sino-Soviet border territory, perhaps Mongolia or Manchuria, being divvied up.

Simulation involved maintaining a fixed position for a good (or, rather, bad) 45 minutes.

“My neck hurts from tilting my head at this angle,” I complained.

“You need to keep it like that; we don’t want to accidentally irradiate your throat,” a technician said.

Talk about instant motivation to stay stock still. A crick in the neck or months on a feeding tube? I’ll go for Door Number 1.

They try to liven up the experience with Muzak and a Hallmark-worthy mural on the ceiling depicting a verdant nature scene in unnaturally bright colors. Someone with a sense of humor had decorated it with little stickers of monkeys , penguins and other assorted geographically incompatible critters cavorting through the fake woodlands. The radiation-delivery device -- a linear accelerator, which looks like a giant’s dinner plate mounted on a mechanical arm -- was also festooned with little stickers of animals and Disney characters.

The actual radiation session was a lot quicker; I was in the room for less than 15 minutes.

“Jump up; butt here, head here and boob out,” a friendly technician said, patting the metal table. Another one tucked a warm blanket around my lower half.

Once they arrange me to their satisfaction, the techs file out into their control room where they supervise the proceedings on closed-circuit monitors. It looks just like the live-TV control room I’m using to seeing on Academy Award broadcasts.

As I lie on the table, a mechanical arm swings the accelerator into different positions over me. When it’s actually zapping, it emits a high-pitched whine and a sign that says “X-ray in progress” lights up on the wall. The four different zaps take just a few minutes in total.

Including putting on the hospital gown, waiting to be called, getting prodded into position, getting zapped and getting re-dressed, each daily radiation session takes about 30 minutes. My standard night-time exhaustion is now kicking in earlier and earlier, and my chest area is starting to feel tender.

Summoning up the full power of my command of the English language, I would say that in comparison to chemotherapy, radiation sucks less.

Saturday, March 19, 2011

Hair today, gone tomorrow

Limbo time.

The doctors gave me a hiatus to recover from chemo before starting radiation. I’m still wiped out and still have lots of medical appointments but am enjoying feeling slightly more normal. I don’t miss those weekly enforced Benadryl naps and grogginess.

My hair, she is gone, baby, gone. There were still cottony strands remaining even after five months of chemo, but I finally had Mark buzz it all off so the new hair will grow in all the same. Everyone says post-chemo hair comes in curly, so I’m placing my order now for adorable ringlets like Keri Russell in "Felicity."

Now all that’s left is perhaps five eyebrow hairs on the left and three on the right. Very, very few eyelashes either – not a pretty look at all. You know how one of the really unattractive things about vultures is their brooding, hooded eyes? Well, that’s a case in point of why eyelashes are a must-have accessory.

Chemo’s finale was anticlimactic. Mark and I brought in cookies to thank the nurses who’d been great throughout. But otherwise it was just Day Number 20 of having toxic substances pumped into my veins.

A couple of days after the last chemo, some women friends gathered to commemorate the rite of passage. This faithful village has been bringing me food, books and flowers; accompanying me to chemo; lending sympathetic ears; taking me out on walks; and just being there throughout. We ate good food, decorated prayer flags, and wore silly hats and wigs.

As I told them: “Some chemo patients expect their friends to shave their heads in solidarity; all I’m asking is that you wear a funny hat for a little while.” Actually it was amazing how the hats brought out different aspects of people’s personalities – a Nashville-style tumble of long auburn tresses turned one friend into a seductive vixen; a jaunty red fedora offset another’s face perfectly; a gentleman’s top hat brought out another friend’s debonair side. I wore a propeller beanie that Ben had sported in fifth grade, and gave the propeller a spin now and then to signal my giddy relief that chemo is over.

As a prelude to radiation, it was time for another mammogram. Even though it would be highly unusual to develop a new tumor right after all that chemo, I was a nervous wreck. It was my first mammogram since the one a year ago where they kept calling me back over and over again to take more images, and then eventually ushered me in to meet with the radiologist. When she said, “Unfortunately we found …” it seemed as if she lingered on every single one of the 17 or so syllables in “unfortunately,” leaving each one hanging in the air like little cartoon thought bubbles.

Adding to the PTSD, this mammogram was at the same location, a chic breast care center with plush terry robes, museum-quality art and comfy upholstered chairs. But all those upscale touches can’t camouflage the fact that at core it’s centered on a malevolent disease. I was the only bald woman in the Butterfly Waiting Room, and I wondered if the other women there, who glanced at me occasionally and then immediately looked away, were flinching at how I represented a stark reminder that they weren't there for mani-pedis.

Unlike normal “screening” mammograms, the ones for breast cancer patients are considered “diagnostic” and they give you results on the spot. Mariann, the technician, was competent and compassionate.

She returned a few minutes after taking the images and said: “Dr B. says everything looks absolutely normal.”

My whole body unclenched and air escaped from my lungs with a whoosh.

“Absolutely normal” -- that’s my goal from now on.

Sunday, March 13, 2011

Off to see the wizard

Talk about playing the cancer card. There I was lined up with hundreds of people waiting to enter a hotel ballroom where a healer would gaze at us for 10 minutes, effecting various miraculous transformations on what ailed us. I got tired so I went to sit down while my pals Jan and Irene held our place.

Then Jan showed up at my side.

“People with special needs get in early!” she hissed.

I was a little slow to get it, but she was staring at me fixedly.

“Oh, you mean I have special needs,” I said. “I guess if I take off my hat, it’s obvious.”

To be fair, I was having a post-chemo day of feeling pretty darn crappy, and later turned out to have a stomach flu.

It’s my new super-power. With the hat on, I look like an ordinary middle-aged woman obsessed with staying warm. Whip it off, and suddenly I’m Sick Lady, an object of pity – and preferential treatment in this case.

So I did it. Jan and Irene hustled us to the front of the line and proclaimed to the gatekeeper: “Our friend has special needs.” And just like that we were entering.

Inside ushers directed us to the center of the very front row, where we’d be sure to catch an extra gaze. Around us were the other special needs folks, some with oxygen tanks, some with wheelchairs or canes.

Yup, another trip to Lourdes, New Age-style.

First came the pre-show warm up – meditative music from a guy on a guitar and a woman on a flute.

As the 300 or so other folks filed in, a pretty blonde woman wielding a microphone whispered “Sssshhhhhh” over and over, so there would be reverential quiet. She was wearing a kind of pink ruffled minidress, tight leggings and 6-inch stiletto heels with a complex arrangement of black straps affixing them to her feet. She also sported bookish glasses. The overall effect was Dominatrix Librarian.

She told us stories about the healer’s powers. “Sometimes people with cancer have visited the bathroom right afterwards and their tumor just miraculously left their body.”

I was confused. What about the bathroom would make a tumor do that?

“I don’t mean to get too graphic,” she apologized.

Oh, I get it now. The tumors were excreted in the toilet.

In all my extensive medical education on Wikipedia, I hadn’t learned about that possibility. Clearly, I need to study harder.

“Some of those people were doctors,” she said, just in case we were doubting Thomases.

She told us what it might be like to be in the presence of the healer. “Sometimes people see a golden light. Sometimes they get warm all over, or feel total bliss and acceptance.”

When the diminutive, long-haired man finally strode into the room and stood on a dais a few feet in front of me, I did feel a brief moment of exhilaration, but it might have been relief that we were getting the show on the road.

In fact, he did project tranquility. His glance traveled over the audience with calm dignity.

While I didn’t see a golden light or feel enveloped in bliss, I took the opportunity to take some deep breaths and practice feeling centered. Looking around me, I saw many people who seemed awe-struck.

After ten minutes, he climbed off the stand and exited stage right.

As we lined up to leave (no special-needs treatment on the way out), Jan whispered: “Do you want to go to the ladies room?”

“No, I’m okay,” I said.

Her eyes twinkled. “But don’t you want to go there to see if you, um, release your cancer?”

I couldn’t quite figure out what path it would have to take to travel from breast to elimination.

“No, no, I think I can skip it,” I said hastily. “Really I’m fine.”

Sunday, February 13, 2011

The effect of gamma rays on man-in-the-moon marigolds

“Ray heavy, ray heavy,” the nice young Japanese radiation technologist kept saying as I lay on the steel table being prepared for a CAT scan.

What did she mean, I wondered? Was she going to use some kind of heavy ray gun on me?

She was trying to adjust my position and I was trying to be helpful and move where she seemed to want me. But she was frustrated and kept repeating her mantra, “Ray heavy.”

Finally I figured out it was a linguistic issue: She was saying “lay heavy” as in, I should turn myself into a lump of inert matter so she could move me around the way she wanted. Going limp turned out to be another one of my heretofore undiscovered skill sets.

Once I’d been prodded into position and scanned, it was time for my first-ever tattoos.

“We don’t take requests, no hearts or flowers or ‘I love Mom,’ ” the congenial radiation oncologist, Dr. CC had told me earlier, clearly a joke she’d delivered quite a few times. She’d shown me an example of the tattoo on the back of her hand – a simple black dot. I wondered if she knew that gang members tattoo similar dots on their hands.

Mine were on my chest and underarm – first Dr. CC scribbled on me with a medical Sharpie, then the technician used another kind of black ink to make dots and finally she pierced them with a needle to make them permanent. They’ll use the dots as an alignment guide to make sure I get zapped in the same place every time.

As directional tattoos go, it could be a lot worse.

Compared to chemo, radiation sounds like a cake walk. All I have to do is show up, take off my shirt and lie on a table for 10 minutes every weekday for six weeks while a bunch of white-coated folks in a control room packed with monitors and screens aim their heavy ray guns at me. But both Dr. CC and my regular oncologist, Dr. D, warned that I’d be amazed how much it would exhaust me. “Chemo already has me sleeping 11 hours a night,” I said. “How much more tired can I get?”

Dr. CC ran through the side effects. My breast is likely to emerge smaller, firmer and permanently tanned. Can’t you do the other one while you’re at it? I thought. And maybe my tummy?

Hey, I’m shallow and proud of it.

Then there were the usual array of downbeat ones: A 5 percent danger of zapping part of the lung which could cause trouble breathing and a persistent dry cough. A 1 percent chance of a future rib fracture. An under-1 percent chance of the radiation causing a new cancer.

Short-term, side effects are the aforementioned exhaustion and the breast skin getting inflamed, sore and swollen.

Dr. CC is so amiable that she actually giggled pleasantly at one of my especially dumb questions. “Isn’t there some extra-strong sunscreen that would block me from getting burned?”

“This is many times stronger than UV radiation,” she said. “There isn’t a cream that could block it.”

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.”