We Gotta Talk

• Sitting in the waiting room waiting for a PET scan, as part of a clinical trial about how chemo affects cognitive ability. An older couple sit in the chairs next to me. The man sports a military style buzz cut and is wearing a sweatshirt with the logo of a Sonoma county ranch on it. His wife, with gray curly hair, wears a house dress.

I mention that I’ve just moved back home to San Francisco from New York. The husband says that they’re from Ukiah, about an hour and a half to the north. “I’ve never been to New York City,” he says. “I once had to deliver a truck to the suburbs, but I never went into town. San Francisco is really the biggest city we can handle.” His wife nods, then her name is called and she disappears behind the blond wood door to the scan rooms. I look at the man. He must have seen a question in that look, because he starts talking. “She had cancer about 18 months ago. In the kidney. My Mom had cancer too, but it was ten years before it came back. She’s got it again, now. They’re not sure where all it has spread. Now this is only a year and a half. That’s not long, is it?”

I agree that it isn’t. I ask if he has family up in Ukiah to help out.

“We have a son and a daughter,” he says. “But the son died.”

“I’m sorry,” I say. “How did he die?”

“Well, since you ask, I’ll tell you,” the man says. “That boy was a bad from the beginning. In and out of trouble. In and out of jail. Finally, one time, he was beating me, and I decided to defend myself for the first time. He had been abusing us for years. Stealing things. Hitting us. I picked up a hatchet and hit him in the back of the head with it. Not the sharp side, mind you. He fell to the ground, but as he lay there, I realized that if he got up again he would kill me. So I hit him again with the blunt end. He died in the hospital. There was a trial. I got involuntary manslaughter, since I was defending myself. But I had to spend some time in the big house. Can’t talk to my wife about it, though. She’ll swear to her dying day that he was a good boy. But he wasn’t. I’m glad he’s dead. I sure do hope my wife is OK, though.”

I often say that people just tell me things, but this is a corker. I often say it’s good to remember that my problems are not the worst in the world, but how do I respond to a story like this man’s? “Well, I wish you the best of luck. I hope your wife gets better,” I say, thankful when my name is called.

• Two days later, in the Infusion Center, a young woman with gorgeous, long black hair looks over at my DigniCap get up and asks how I got to be in the trial. She has a quiet beauty about her, but also a bit of a lost look. She says she’s stage 2b, which means several of her mammary lymph nodes showed signs of cancer. She’d like to know more about the DigniCap that’s freezing the bejeesus out of my scalp.

She’s also heard of another system, the Penguin Cold Cap System, which uses sacks of dry ice to cool the head down. A friend emailed a link to a Good Morning America segment on it, but I’ll be damned if I can find it. I have another friend who wore cold mittens and socks to avoid the the “neuropathy” —pins and needles or a burning feeling—that can affect the hands and feet of chemo patients.

In any case, this young woman is taking Adriamycin and Taxol. I suck in my breath. I’ve heard through the grapevine that these two drugs take the scorched earth approach to hair follicles. But she hasn’t shaved her beautiful hair yet. “I’ve heard it doesn’t come out until later cycles,” she says. Her eyes get sad as she says this.

Then she tells her cancer story: she grew up here in the Bay Area, in Concord, in the East Bay. She’s been living in Kona, on the big island of Hawai’i for 15 years. She works at the airport there. Like many, I guess, she works at any job that will keep her in Hawai’i. A few months ago, she brushed against her breast, and felt something hard, about the size of a golf ball. She went to the doctor, who told it was probably nothing to worry about. She was too young to have cancer. So she waited a few months, then she went to another doctor for a second opinion. This doctor told her it was serious.

“I should have gotten on a plane the first time I felt that lump,” she says. “But I didn’t. I used to get free flights to the mainland through my job. But now, with the recession, when I need those flights, I don’t get them. So I’m on leave from my job, living in Concord.”

I assume she’s living with her parents, in her childhood home, but uncharacteristically for someone so nosy, I don’t ask. But I get the sense that she’s facing this mostly alone.

I ask if she has many friend left in the Bay Area, she shakes her head. I tell her about Bay Area Young Survivors (BAYS), and encourgage her to get in touch with them. “They’ll help you navigate all this. They’re great. They’ll give you a community. And I’d be happy to meet you for coffee or whatever. Really. And I’ll email you the website for the DigniCap trial and the Penguin Cap system.”

Alexa comes up to check me, and the DigniCap machine, and the woman asks if she could be part of the trial I’m in. When Alexa hears that Ariamycin is part of the woman’s regimen, she shakes her head sadly, “No, this won’t work if you’re taking Adriamycin,” she says gently.

The young woman with the gorgeous long black hair, sits back sadly in her infusion chair. “Maybe the Penguin Cold Cap system will work,” I say hopefully, though from what I hear, I’m pretty sure it won’t.

Suddenly, I feel guilty about this chance to keep my hair, about my husband and one of my best buddies sitting next to me, about the chocolate and the silly Playmobil cancer warriors. How many women have to go through this alone, without enough information, without their hair? I want to hug this woman, to make it all better for her. But I can’t. All I can do is exchange emails with her, and vow to meet her for lunch or coffee, to introduce her to the BAYS women.

All month, I’ve been thinking about writing a post about the annoyingly ubiquitous Breast Cancer Month pink: pink ribbons, pink gift pears, pink Dansko clogs, pink lip balm, pink Mint Milanos, pink pasta, pink Cheerios and on and on. I’ve just finished reading the book, “Promise Me,” by Nancy G. Brinker, who started the whole thing 30 years ago after her sister Susan G. Komen died from breast cancer at the age of 36. Then came the Susan G. Komen Race for the Cure, and the 3-day walks for the cure, and lighting the chain bridge in Budapest pink, and pinking up the pyramids in Cairo, and all the pink teams marching around San Francisco at the beginning of this month.

I remember passing marchers near Baker Beach and the Golden Gate Bridge while bringing daughter Erin and her classmate Kinga home from school just before my first oncology appointment. They never seemed to stop. They wore silly outfits: pink bunny ears, and pink angel wings, and pink tutus. Erin groaned, “Mommy, PROMISE ME you won’t wear those silly angel wings next year!”

When things get too popular, you even get push back from 9-year-olds. At the time, now almost four weeks ago, I kind of sided with my daughter. Could it be possible that anyone in America did not know about breast cancer? With breast cancer gasoline and breast cancer hamburgers and breast cancer t-shirts and breast cancers specials screaming at us from every corner of our over-stuffed capitalist creation?

Amazingly, I guess the answer is yes. This young woman next to me in the infusion center, this young woman whom I hope to befriend, this young woman took a doctor’s word for it that a golf ball-sized lump was nothing worry about because she was so young. If that kind of ignorance-not my new friend’s ignorance but the doctors’- can still exist, then we still need Breast Cancer Awareness Month.

Next year, expect to see me marching and running. I won’t do wings, but you might be able to talk me into a tutu, or a funny wig. Something about breast cancer’s got to be fun.

Inspiration for next year's Breast Cancer march?

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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