So many dreams die with a cancer diagnosis. It’s a loss of innocence, a shattering of our sense of security. My dream of having a child with Norman died with my diagnosis. The loss cut deep and still pains me. We have to honor those losses and grieve those dreams before we can truly open our eyes anew. It’s natural for people to pull away from someone with cancer, simply because they don’t know what to say. Or because they’re terrified of it. Some need to believe that it’s somehow your fault, because then they can believe it’ll never happen to them. Of course, knowing that makes it no less isolating. The people who stick—those are your friends. There is a certain luxury in knowing beyond a shadow of a doubt who they are.
I’m actually far more comfortable talking about other people’s cancer experiences than I am talking about my own. In fact, I hate talking about my own cancer experience. There’s a little superstition, I suppose; I’m frankly terrified of ever facing that cave entrance again. But more than that, I’m humbly aware and deeply grateful for the resources I had available to me, from the education and wherewithal to get a second and third opinion, right up to and including every soft pillow, room service call, and plane ticket. I had the best possible care. At the time, I was often weepy with gratitude and relief, and even now, the realization of how lucky I was leaves me with a lump in my throat. The cancer experience of a woman in a developing country—or even a woman living in poverty in the United States—is a different universe.
Never would I insult these women by pretending to know how they feel, and their plight weighed even more heavily on my heart after I’d made it through the dark valley. Every woman—no matter where she lives, whatever the color of her skin—is equally deserving of the best possible care. I doubled my resolve to make sure it would be there for her.
Love Will Find a Way
THERE’S NO such thing as a convenient time to get cancer. I’ve heard apocryphal tales of women diagnosed amid the choking dust of 9/11 or stranded with fresh mastectomies as water rose after Hurricane Katrina. A woman diagnosed the day before her wedding. A woman diagnosed the day her mother died. Even the quiet losses of cancer are cataclysmic, and every woman’s experience is unique. No matter how much support she has, on a fundamental level, she’s in it alone, and that makes her uniquely qualified to make decisions about how to go forward. Only she sees that cancer diagnosis in its true context: her life.
Kim Bloom’s life was right on track. She’d started her career with a pharmaceutical giant, launching drugs and educational programs for women with osteoporosis, progressed to Wharton’s executive M.B.A. program, and skyrocketed from there. In 2002, after several months of infertility treatment and in vitro fertilization, Kim and her husband were finally expecting a baby. The child they’d envisioned and fought for was growing inside her.
So was breast cancer.
Kim miscarried and in the blur of that heartbreak discovered the lump in her breast.
“I’d been doing routine self-exams all along. I knew what my breasts felt like. This wasn’t right.”
She was diagnosed with invasive ductile carcinoma. The lump itself was less than a centimeter in diameter, but the cancer had metastasized to six lymph nodes.
“My first question was ‘Will I live?’ And then I asked, ‘Will I ever have a child?’ My doctor responded with statistics. That’s what I wanted. I’m data driven, trained by years in the drug industry. You arm yourself with the facts and go from there. I reached out to friends, family, colleagues in the industry, anyone who could help me understand and fight this disease.”
The cancer was estrogen receptor positive; pregnancy was contraindicated. (A dry summation of dashed hope, if ever there was one.) Kim interviewed oncologists and surgeons, making clear that preserving her fertility was second only to fighting for her life. Before starting chemo, they used tamoxifen to stimulate ovulation, harvested four viable eggs, and froze four viable embryos. Kim chose the most aggressive treatment available to her, enrolling in a clinical trial at Sloan-Kettering: FEC (5-fluorouracil, epirubicin, and cyclophosphamide) followed by Taxol and taxane.
“Sitting in the infusion clinic, I kept thinking, Why is this happening? I should be in a hospital having a baby. Every week, I bought one children’s book and put it on a shelf for my baby-to-be. That focus on the future helped me through the toughest days of treatment.”
A year later, Kim was in remission. A gestational surrogate (who remains a dear friend) was implanted with one of the embryos. The pregnancy took, but the surrogate lost the baby Mother’s Day weekend.
“It was just bitterly ironic,” Kim says. “I felt like cancer had taken so much of my identity and now the last tiny bit of who I was before … it was gone.”
But she couldn’t let go of the idea that she was supposed to be someone’s mother. She’d accepted long before that it wouldn’t be easy or traditional. It would be a conscious, sometimes controversial, choice, and she’d have to fight for it. In her favor was the fact that she and her husband—through a combination of brains, opportunity, and hard work—had the knowledge and resources that made it possible for her to make choices when it came to both fertility and breast cancer.
It baffles me when third parties feel authorized to comment on—or hijack—women’s decisions about breast health and childbearing, two deeply intimate issues. The so-called breast cancer wars tax my patience even more than the so-called mommy wars of the 1970s and ’80s.
Suzy and I were the poster girls for those much-ballyhooed “mommy wars”: she the traditional stay-at-home mom, I the full-time working mom. And Suzy and I were never at war. Some pundits wanted us to believe all homebound mommies were secretly immolated by dying ambition, but I knew Suzy was doing exactly what she wanted to do, and I was in awe of how well she did it. Other pundits wanted to cast workforce moms as feral cats who abandoned their offspring and thwarted God’s will, but Suzy was thrilled to see me learning and growing in my work. She understood that was the only way I could be a good mother, because it was the only way I could be myself, and she was sad to see so many women conflicted about it.
First Lady Nancy Reagan discovered a lump in her breast in 1987 and opted for the old-school single-stage biopsy-mastectomy rather than the modern two-step procedure, telling physicians, “Look, if you get in there and find out what it is, please don’t wake me up to have a conversation. It shouldn’t take long to take it off,” she added grimly. “Dolly Parton I’m not.”
My friend Rose Kushner was terribly offended by this. She thought it set a bad example for women. I was worried about Rose at the time; she’d developed that odd little barking cough, just like Suzy. But the stand she was taking seemed so cruel to me. While I reached out to Mrs. Reagan with full support, Rose very publicly condemned her for making a treatment decision that, to enlightened lumpectomy proponents, seemed impossibly backward.
“She was a perfect candidate for lumpectomy and radiation,” Rose fumed. “A tiny little tumor with no lymph node involvement …”
“In her breast,” I said. “Which makes it her decision.”
“She’s as good as telling women to go out and mutilate themselves for no reason.”
“No, she’s telling women to go out there and make their own decisions. And you don’t know a damn thing about her reasons, Rose.”
“Neither does anyone else, Nancy. All they know is if the First Lady does it, it must be right. Just watch.…” Rose barked angrily into the crook of her elbow. “Watch the mastectomy numbers go up and the lumpectomy numbers go down.”
Have you ever had a friend (or perhaps a sister) you wanted to gather in your arms one minute and the next minute shake her till her teeth rattled? That was Rose for me—and me for Rose, I’m sure.
Annoying little turf wars occasionally erupt in the cancer community, and when they do, I physically feel energy being drained from the important work before us. There are sharp—sometimes vehement—differences of opinion, but we’re all on the same side. We all want t
he same thing, which is, bluntly, fewer dead women. As we engage in heated debate over health care reform in the United States, growing concern over the cost of breast cancer screening and treatment gives rise to the question of whether chemo is justifiable—morally or financially—in cases where the patient’s odds of survival are statistically thread-slim. Does a thread-slim chance of malignancy justify a painful, expensive biopsy? Is a second opinion justified when a perfectly competent physician has already made an expert judgment call?
There are no cookie-cutter solutions. Every diagnosis is unique, and with all due respect to well-meaning loved ones, nervous insurers, and anyone else who feels some political, personal, or financial stake in the matter, your diagnosis belongs to you, as do your treatment decisions, and you’re not obligated to justify them to anyone.
A woman’s life is not a cost; it’s a benefit.
Instead of devoting resources to telling women how wrong they are when they make decisions about their unique bodies from the unique perspectives of their unique lives, let’s devote resources to advancing our understanding of this disease and improving the technology we use to detect and treat it. Let’s make sure every woman has access to resources that provide a range of treatment options, along with the education she needs to make an informed choice about a situation only she can fully understand. Instead of asking why a woman needs a second opinion or complaining that her prophylactic mastectomy is really just a “boob job,” let’s ask why thousands of American families are bankrupted by cancer each year and rage about the millions of women all over the world who have no access to care or screening.
Rose was absolutely right; mastectomy numbers went up for a while. But so did mammogram numbers. There was heightened response, but heightened awareness came with it. Hopefully, Nancy Reagan’s forth-rightness and courage did as much good as Rose Kushner’s forthrightness and courage. They both inspired women to be brave in the face of criticism and smart about their unique life and health decisions.
In her foreword to I Love you, Ronnie: The Letters of Ronald Reagan to Nancy Reagan, Nancy spoke eloquently about what it was like for her after President Reagan was diagnosed with Alzheimer’s. It reminded me of how she spoke about her cancer experience back in the day.
“People are incredibly kind and sympathetic,” she said, “in an elevator, on the street, everywhere. And the mail, which is tremendous … I can’t begin to say how much this means to me and how helpful it is. There is a feeling of loneliness when you’re in this situation. Not that your friends aren’t supportive of you; they are. But no one can really know what it’s like unless they’ve traveled this path.… Each day is different, and you get up, put one foot in front of the other, and go—and love; just love.”
In January 2005, Kim Bloom’s gestational surrogate was implanted with an embryo from a donor egg. In September, bouncing baby Ethan Bloom was born.
“For a long time I’d asked, Why me? and Why is this happening?” says Kim. “Ethan turned that completely upside down with all those why questions children ask. Why does a car have four wheels? Why is an elephant’s nose long? It inspired me to think about the world in a vivid new way. I love his explanation of how babies are created: ‘an egg from the mom and a spare from the dad.’ ”
Kim fully appreciates that her life is as much a miracle of modern science as Ethan’s.
“After my diagnosis, I took time to listen, look, explore. I wanted to give and focus on family. I don’t know if it was the thought of karma or the clock ticking. Maybe everyone gets to a place where you question the core of what you want to achieve.”
Kim left the corporate world and bought Rosie Hippo, a little green toy company, so she’d have the flexibility to spend more time being a basically traditional mom.
“People thought I was crazy to walk away from my career, but this business is so me. It combines my interest in child development, my creative side, my marketing background, plus core values I want Ethan to learn: responsibility, generosity, respect. I’m developing resources for moms with cancer, because as much as I wish it wasn’t, that’s part of who I am now.”
Over the years, I’ve seen many, many people—myself and Rose Kushner included—emerge from the cancer experience, flourishing with a passion and laser-sharp sense of direction they wouldn’t have previously imagined. Does this mean cancer is a gift?
Not in my vocabulary.
“If cancer is a gift,” writes Jen Singer, a young survivor mom, “where can I return it?”
The gift is a second chance at life and a new fulcrum from which to balance our options and priorities. We are more than the sum of our cells. More, even, than the sum of our dreams. We are, as Camus said, the sum of our choices, creating and re-creating ourselves day by day. When we choose an act of kindness, we are kind. When we choose an act of courage, we are brave.
Life goes on, and kindly, bravely, we must each find our own way.
∼ 15 ∼
To Market, To Market
No one, including Norman and Dr. Blumenschein, thought it was a great idea for me to play in our July polo tournament. “You shouldn’t be on a horse at all,” said Dr. Blumenschein, following up with a litany of reasons why the potential risk outweighed the potential benefits. My immune system was compromised, so a broken finger or a skinned elbow could turn into a serious issue. Even a small bruise could bring on a major bout of lymphedema, an uncomfortable and sometimes irreversible swelling of tissue that occurs when lymph nodes have been blocked, damaged, or removed.
I chose to play anyway; for me the benefits outweighed the risk.
“Let me work with you,” said Norman. “Start back easy and work up to it.”
The hours he spent coaching me were a luxury. We were back where we began together. As worried as he was for my well-being, Norman loved my willingness to get back on the horse, as it were, and I loved that he still believed in our well-matched stride.
A few weeks after I finished chemo, I played in a polo tournament, pink helmet on my bald head and pink socks on my pony. What a glorious day! Oh, it felt good to fly down the field on that swift pony, fully engaged again, completely alive and finally outside. This was that day in the park I’d promised myself, and I said a prayer for that little boy from the PT room. I never saw him again, but I do hope he had many days, many years, of sunlight and air.
On the downside, I did bruise my arm, and it swelled up like an elephant’s leg. The lymphedema from that day never fully went away. This is an issue that affects a lot of women with breast cancer, but I’d never fully appreciated what the impact can be. It’s painful, and it’s scary because a giant swollen arm that never goes away is frankly a lot more visibly disfiguring than a mastectomy, which can be reconstructed or compensated for with the right clothes. (I was still sporting the singleton Righty; I didn’t opt for immediate reconstruction like Suzy did.) Lymphedema can’t be cured per se, but it can be controlled. I studied up and aggressively went after it with physical therapy, compression wraps, and pharmaceuticals. And a nice selection of three-quarter-length sleeves. Sometimes keeping up appearances is the best you can do for the moment.
In retrospect, once I got my arm back to a presentable size and shape, the polo match was worth it. I learned something the hard way, and those are often the lessons that stick with us. But more important, I stayed true to the woman I was before I had cancer. If it comes down to a choice between risking and settling, I’ll take the risk. Cancer couldn’t take that away from me—or perhaps I should say chemo couldn’t cure me of it.
Norman understood this. Neither of us was hardwired to sit on the sidelines.
I was vigilant about my follow-up schedule. Walking out of your last radiation or chemo treatment is elating, but there’s also the feeling of suddenly working without a net. Your support network goes on about their business, and so do you, but the fact that you’re no longer actively fighting the cancer is a little unnerving. Limbo is my least favorite state of being, and the
very word remission is uncomfortably open to possibilities. I was hypersensitive to every twitch and ping in my body. Dr. Blumenschein must have wanted to hide every time he saw me coming.
“You’ve got what I call ‘toe cancer,’ ” said my friend Carolyn Walker, who’d been there and done that. “You start thinking every headache is a brain tumor, every tummy rumble is congestive heart failure.”
Mom’s diagnosis was “checkup crazies.” Basically the same idea.
“What’s the treatment for that?” I wondered.
“Time,” said my wise mother.
I kept my sanity by expending every ounce of my energy every day. What I didn’t give to my family, I gave to SGK—and not always in that order, I’m ashamed to say. I was always immersed in data, trying to get a handle on the freshest science, wanting to know everything that was going on in clinical research, patient advocacy, insurance issues, bills before Congress. As our visibility expanded, requests for help flooded in—grant proposals from researchers, patients wandering the wilderness, families frustrated and terrified—and we did everything we could, but there was never enough time or money to accommodate everyone.
“We have to do more,” I kept telling Norman. “We have to do better.”
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