Sunday, February 24, 2013

Arsenic, Gall of Boar, and Three Tablespoons of Hemlock Juice


I’m an extremely curious (some would say nosy) person by nature, so it still surprises me a little that I haven’t been compelled to find out every single thing I can about breast cancer. I did some initial research; it seemed the responsible thing to do. But I was overwhelmed by the sheer volume of information available, not to mention the fact that my eyes glazed over every time I picked any one article to read because I didn’t have the base of knowledge about science and medicine or the vocabulary necessary to understand what I was looking at. So I gave up trying to be a breast cancer expert and put myself in the hands of my very excellent doctors, learning only enough to be able to ask intelligent questions about my own treatment along the way.

As I tried to put what was happening into perspective, I talked to friends who had undergone treatment for breast cancer over the years; I read some cancer memoirs, including Jan Lucas Grimm’s brutally honest My Beautiful Leukemia. I read about the history of breast cancer, too.

Briefly (and not very scientifically)…

Hippocrates (460 BC-380 BC) named cancer “karkinoma” (carcinoma), Greek for “crab,” because the tumor with its extensions reminded him of the body and legs of a crab. He believed the body was made up of four humors: blood, phlegm, yellow bile, and black bile. When a person became ill, it was because one of these humors was out of balance. Cancer, according to Hippocrates, was caused by an excess of black bile. It was curable only in its earliest stages, with bloodletting, which was believed to purge the patient of bad humors, and by applying a variety of kinds of pastes, most containing arsenic, to the area where the tumor had appeared. The pastes caused tissue necrosis, which sloughed off, leaving the wound to heal by the formation of new tissue.

In the second century, the view of cancer was much the same as Hippocrates’s. But the Roman physician Galen wrote about surgical cures for breast cancer in cases where the tumor could be removed at a very early stage. Surgical tools were primitive, though—scalpels, forceps, hooks, and cauterizing tools that must have struck terror in a patient’s heart just looking at them. And here’s the recipe for anesthesia, which might also have given her pause: “Gall of boar, 3 spoons of hemlock juice, wild briony, lettuce, opium poppy, henbane vinegar. Mix together, boil a little, put into glass vessel, well stoppered. Add 3 spoons of good wine or ale, mix well.” The patient was to drink the whole bottle next to a warm fire, where she would fall asleep and could be operated on. A mixture of salt and vinegar was used to awaken her when the operation was over—assuming the loss of blood or anesthesia hadn’t killed her.

These same practices and beliefs would have informed the treatment of a woman diagnosed with breast cancer well into the sixteenth century, when the first book of anatomy was published. Anesthesia as we know it wasn’t invented until the mid-1800’s. It wasn't until the late twentieth century, when biochemistry and technology combined to create the field of molecular biology, that scientists began to understand what causes breast cancer, leading to the kind of treatments I'm undergoing today.

Talk about perspective! That little dose of history made a lumpectomy and moderate courses of chemo and radiation look not so bad, after all. Nonetheless, I know that this experience will change me--and I knew from the moment of diagnosis that, eventually, anything and maybe everything from small, seemingly insignificant details to the essence of the experience will make its way into a novel.

The novelist Muriel Spark said of being a writer, “Nothing is lost,” which I believe, absolutely--and which makes me wonder sometimes, What do people who aren’t writers do with the joys and sorrows of their lives?

Tuesday, February 19, 2013

The Chemo Living Room


My good friend, Mike, who was diagnosed with lymphoma in 1988, was one of the first people I knew who was anywhere near my own age to have cancer. I remember feeling physically sick, as well as sick at heart, when I found out—and a lot of times along the way, as he endured six months of chemotherapy, then radiation. Within three months, it was back again and he had to start all over. A third bout several years later required a bone marrow transfer, daily chemo treatments that had horrible side effects and brought him just to the brink of death, and weeks in isolation.

He rarely complained throughout this long ordeal and, somehow, even maintained his wonderful, irreverent sense of humor.

‘Time to visit the chemo living room,” he’d say, heading for a treatment.

I didn’t quite know what he meant until I took him one day and entered the big room lined with cancer patients in Barca-Loungers and a big TV in the center. Some of the patients were watching whatever was on the screen—probably a game show. Others were reading or knitting or doing crossword puzzles. A few were swaddled in white blankets, sleeping or looking miserable. Mike was a friendly guy. He chatted and joked with the nurse, who settled him in to one of the empty Barca-Loungers and put in an IV. The chemo meds were in three separate bags, which would be administered one at a time. She hung the first on a steel “tree,” connected the clear tube to the IV. You could see it start to drip.

What you couldn’t see was Mike’s dread, which was so great that he’d gotten out of the car upon our arrival and vomited in the parking lot just at the thought of having to do this again.

Everyone’s heard about the horrors of chemotherapy—the violent nausea, the mouth sores, the fatigue, fingernails that turn yellow and crack and fall off. Who’s not afraid of it? I certainly was. I just hoped I’d manage it with a minimum of whining and a maximum or humor and irony.

The chemo living room at IU’s Simon Cancer Center is a circular pod. Each Barca-Lounger is tucked into its own cubicle with a half-wall separating it from the one next door. Each has its own TV, which I must say created my most anxious moments when, during one treatment, my neighbor, apparently deaf in addition to suffering from cancer, watched “The Price Is Right” at what seemed like full volume. And me with no iPod to drown it out.

The nurses there are pros with IV’s: sting and it’s in. They administer up the anti-nausea drugs first. Then the bags (two, in my case) of chemo drugs, one by one. It was not without some measure of dread that I watched them drip slowly into my system the first time.

I’m pretty good at guided imagery. I can put myself to sleep walking the stone streets of Assisi; sometimes I can banish a headache by imagining the headache as a block of ice and myself on a beach chair near the ocean, breathing in warm air to melt it away. So I gave it a try, visualizing the drip turning into a tsunami of death for the cancer cells in its way. But all I could see were the bright, cheerful good cells, who’d done nothing at all to hurt me, trying to escape. I felt bad, like I should apologize to them. So I just picked up the book I’d brought and got lost in its story instead.

I was prepared for the worst; that’s what I do. I knew what Mike and other friends and relatives had been through. I’d been to “chemo school,” a session at which my oncologist’s nurse assistant laid out all the possibilities, kind of like a little shop of horrors. Prescriptions for nausea were at home, at the ready.

But, thankfully, nausea never came. Mega-headache, yes; serious fatigue; whacked-out taste buds that that made everything taste awful; occasional bone pain in my legs that felt like fingers pressing the keys of a flute, hard—and a series of, shall we say “bodily function” complaints that are better left to your imagination.

Oh, and baldness, but that’s another story.

The worst thing that happened to me over the cycle of four chemo sessions was catching the flu over Christmas break, which sent me to the emergency room twice due to high fever and laid me low for the better part of three weeks. Nothing funny about that. Though I did return home from one of the emergency room visits with a pink band around my right wrist that read, “Limb Alert,” which made me laugh.

I’m very glad that my time in the chemo living room is over. I hope I don’t ever have to go there again. But I also feel incredibly lucky to have been diagnosed early enough that the treatment I needed was comparatively mild and to have been the beneficiary of the research and development of nausea drugs that, at least for me, put that most dreaded aspect chemotherapy out of the picture.

Probably in a hundred years, people will look at the idea of poisoning people to cure them the way we look at certain medical treatments in medieval times. But chemotherapy treatments have gotten a whole lot more bearable in the twenty-five years since Mike received his diagnosis. If you’re about to start treatment yourself, or someone you love, take heart. It may not be nearly as bad as you imagine it to be.


Tuesday, February 12, 2013

Before and After

My friend Margaret-Love, writing teacher extraordinaire, made up this exercise, a favorite of mine because it never fails to yield a wealth of material, even for the most blocked and/or insecure writer.

First, make a list of the times in your life or your character’s life when something happened that changed the course or your life and/or altered the way you saw the world. The kind of times that, when explaining ourselves to others, we might say “before” or “after.” They might be large moments, like 9/11 or Hurricane Katrina. But more often, they’re small, deeply personal moments. Before Mother died, before my brother was born. After the move, the accident, the bankruptcy.

These times, ML says, are rich with tension, conflict, and scene. So choose one of them, write down every single thing you can remember about it and, suddenly, you’ll have so many scenes to work with you’ll hardly know where to start.

For example—considering your parents’ divorce, you might remember witnessing a terrible argument, eavesdropping on a conversation you wish you hadn’t heard, the evening they sat your down broke the news that they were parting, watching your father moving out, your first visit to his new home, a strained birthday celebration, the first Christmas without him…you get the picture. Each memory is like a little movie. Set one rolling in your mind’s eye and just write down everything you hear and see.

It works for fiction, too. Consider the significant events in your character’s life and brainstorm to discover scenes and moments surrounding them.

Serious illness often shows up on “Before and After” lists. I don’t know yet whether having cancer will end up on mine. At the moment, it feels like a dangerous patch of highway, a time to slow down, bring everything I have in me to navigating it safely and well.

But it certainly has made me think—about a lot of things, including the idea that our bodies have their stories too, moments of before and after happening beneath our skin that are unknown to us until they manifest themselves months or years later as, say, a spot on a mammogram.

Before, my cells were humming along, doing what cells were supposed to do; then, in a particular moment of time, one of them went rogue on me. If my body could talk, it might say, “Before that damn cell ran amuck, I was fine—exemplary! After, I went through hell and never was the same again.”

I’ve never been able to understand why some people find out they have cancer and delay treatment, sometimes for months saying things like, “I don’t want to spoil the holidays” or “We’ve got that trip planned to…wherever” or “There’s no way I’m going to be bald for my son’s wedding.” It’s not uncommon for surgeons and oncologists to tell patients that there’s a safe range of time to wait before beginning the treatment they need.

The thing is, the body’s own story is going on regardless of their plans. In my case, there was a particular moment when the first cell went rogue; another moment when one of the mutating cells separated itself from the others, made it through the wall of the duct; and another when one split and took the available path to the sentinel lymph node. The body keeps its stories to itself, so, while the pathology report after my lumpectomy indicates that it’s unlikely, even my doctors, among the best in the world, can’t know for sure whether there was a moment a tiny, tiny, invisible-to-the-microscope bit of the tiny, tiny bit of cancer nestling in that lymph node had already made it to the next lymph node on a set path toward my bloodstream.

Thus, my body will have a war story in its silent repertoire: chemotherapy and radiation, a search and destroy mission with orders to finish off that cell and any others that might have broken away.

Collateral damage. There always is.

But that will be a whole different story.





Sunday, February 10, 2013

A Good Bad Day

I feel pretty good the first few days after chemo, then the Ugh starts to roll in. First a sensation on the tip of my tongue, not burning—more like the numbness that occurs after a burn. Then my tongue swells a bit, there’s a hint of iron at the back of my mouth and soon everything tastes of it. My shoulders are achy, a headache starts at the top of my head and slides down to my eyes. My stomach feels queasy. I get really, really, really tired.

I had the last one Monday and, believe me, I have no desire to prove the point—but I think I figured out the best way to deal with it this time. I am obsessive by nature. Too impatient to watch a series, even one I love, week by week, I’d far rather wait until the DVD’s come out and I can watch them in great gulps. I did it with the first two seasons of "Downton Abbey" and figured I’d have to wait, maybe even a year, to watch the third.

But no! There it was on the rack at Barnes & Noble.

“How can that be?” I asked. “We’re only halfway through it here.”

“The Brits released it early,” the sales clerk said.

It was 30% off and another 10% because I’m a Barnes & Noble Member. Plus, there was the “Cancer Card,” which I’ve found allows a certain measure of indulgence.

I bought it.

And spent yesterday watching all nine episodes, one after the other. I felt crappy, I was tired, everything (except popsicles) tasted awful. So what? I spent the whole day at Downton Abbey, rooting for the family to survive its financials disasters, reveling in the downstairs intrigues, grieving for Lady Sybil, delighted by the repartee between the Dowager and Cousin Isabel, and wishing I had every single that dress Lady Mary wore.

No spoilers here. I won’t say a word. But be ready.

Want to borrow it? Just call.


Wednesday, February 6, 2013

Body Land

Early last September, after an extensive physical, my family physician pronounced me “an extraordinarily healthy woman of sixty-five.” I’d checked “No” on every single symptom or condition. No, I’d never had surgery. I’d never broken an arm or a leg or even a finger.

I’d always been grateful for my good health, never taken it for granted, but it was hard not to think of good health and boundless energy as a part of my identity. Plus, there's my legendary Aunt Ruth, slowed down considerably at 96, but as smart and funny as she ever was. Why wouldn’t I have those good genes, too?

Looking back, maybe I was a little too pleased with my healthy, energetic persona. Not that it really matters. Though being a little too pleased with yourself about anything does seem to alert the cosmos to the fact that it might just be time for a little challenge.

In any case, September was a great month. I’d just returned from a delicious, restorative few weeks in Italy. I was excited about the upcoming release of my seventh novel, An American Tune, and looking forward to the various book events I’d scheduled to help it make its way into the world. Indiana University Press had made it into a really beautiful book of it and, I confess, I spent a lot of time just looking at it and thinking, nearly ten years of work, the book I felt I’d become a writer to write, and now here it is in my hands.

The publication date was September 24. September 26, Indy Reads Books was packed with friends and family, who’d come to celebrate the book launch and, signing copy after copy, I felt grateful and amazed and even a little hopeful about how the book might fare as it traveled from one reader to another out into the universe. September 27, I received the Eugene and Marilyn Glick Regional Indiana Authors Award at an elegant banquet held in the atrium of the Central Library. John Green, Dan Wakefield, and Christopher Coake—all tremendously gifted Indiana writers—were honored, as well. I was surrounded by my family and friends, many of them writers I deeply admire—and by thousands and thousands of books, some you could see, some living their quiet lives on the dark shelves of the stacks beyond where we sat. Afterwards, my husband, Steve and I, checked into the very nice hotel room the Library Foundation had provided, then went back out into the balmy evening for a walk around downtown and a midnigh. It was one of the happiest evenings of my life.

Monday morning, I received a call informing me that the annual mammogram I’d had the week before showed calcifications at which they wanted to look more closely. “The good news is, the left breast is clear,” the radiologist said about the second mammogram's results. But a biopsy would be required to determine whether the calcified areas in my right were “worrisome or benign.”

Long story short: they were “worrisome,” indeed. In an instant, I went from being an extraordinarily healthy woman of sixty-five to a woman facing breast cancer. Early detection/Excellent prognosis—just four three-week cycles of a relatively low dose of chemo and some radiation would be required. All good news. Still. It wasn’t going to be easy.

I’m a writer: I live in my head. Now I was a writer who would be living very much in my body for a while.

All right, then, I thought. Body Land. What’s that that going to be like?

Early in December I had my first chemo treatment and began to find out.

“I thought you’d blog about this,” a friend said to me, not long ago.

“I thought I would, too,” I said. “I’m not sure why I haven’t.”

Then I had my last chemo treatment Monday and, suddenly, it seemed like the right time. So here goes. Stay tuned for a series of probably fractured scenes and thoughts and moments from life in Body Land over the past few months and who knows what from the future ones.