Survivorship Secrets

Last Thursday, I arrange the carpool and dinner situation so that I can attend an evening panel at UCSF, “Survivorship: I did it my way.” Several other cancer survivors are going to talk about their experiences.

I enter the lecture full of hope. These folks are going to give me insights. They’re going to sketch out a road map for the whole survivorship experience. They’re going to help me figure out how to integrate the experience of cancer into my life without letting the disease take over.

As I find my way up to a seat in the back of the room, I pass lots of people in head scarves, people in active treatment. The cancer center psychologist is talking about the reason for this workshop: She’s treated hundreds of people with cancer, but she’s never had cancer. The cancer patients are the experts, she says, they should tell their own stories. Fair enough.

Then a woman gets up and talks about her breast cancer for a really, really long time. She was first diagnosed in the 1980s. Then after several years of follow-up mammograms, she figures that she’s been given a “Get Out of Jail Free” card. She’s already had cancer, it couldn’t possibly come back. She admits she was just tired of the fear. You can probably see where this is going: Of course, her cancer comes back. And because it’s not caught early this time, her treatment is aggressive and harrowing. I can’t imagine being so afraid that I avoid getting mammograms. I feel for the speaker, but her experience doesn’t resonate for me.

Then a handsome, graying man talks about getting prostate cancer and then leukemia just a couple years later. He doesn’t know where he’d be without his devoted partner.

A tall, thin woman talks. I’ve been looking at her for a while, thinking that her shock of crazy curly auburn hair makes her look almost skeletal. Then I hear why: She has spent the last ten years battling some incredibly rare form of leukemia. She was hospitalized just a couple days after her diagnosis and didn’t leave the hospital for a year. She endured a bone marrow transplant. I’ve written several articles about bone marrow transplants and I think they’re probably one of the most devastatingly awful medical treatments ever devised. They make the nausea and fatigue and mouthsores of more conventional chemo look like child’s play. No one would ever consent to go through a bone marrow transplant unless the only other alternative was death. This woman is fiery. She’s now almost a decade past her transplant and fighting “graft verus host disease,” a condition in which the body’s immune system attacks the donated bone marrow. I admire her grit, but I can’t relate to her anger. I guess I just haven’t been through as much as she has.

An older man talks. He’s 78, a veteran of prostate cancer. He says he loves his doctors, that they saved his life. He seems nice, but again, I can’t relate to his story.

During the questions and answers following the various survivor stories, I hear all sorts of advice: Don’t do research on the Internet. By all means, do research on the Internet. Take charge of your disease! Let the doctors make decision for you! Take advantage of the UCSF Osher Center for Integrative Medicine (read: alternative treatments like tai-chi and acupuncture and mediation of all stripes). Don’t go to Osher! Look for similar services in your community! Thank the people who’ve cared for you. Yes, that’s right, thank them a dozen times a day. Try to find joyful moments, even during terrible times. Get enough exercise.

Everyone in the room is well-meaning, passionate, but they don’t give me what I’m looking for: answers. Nothing they’re saying surprises me.

No one tells me how open I should be about my health in a work context. No one tells me how I can help my family get over the whole cancer nightmare. How can I tell how much it affected my daughter? How long will it take until my husband and I find a “new normal”? No one tells me how to find the balance between vigilance and obsessive fear.

As a writer, I’ve dedicated my life to the idea that telling stories has inherent worth, that one person’s story can get at deeper truths. Yet I find myself strangely unfulfilled by the stories of these other cancer survivors. I feel more than a little guilty as I slip out the back door of the lecture hall 15 minutes early. What’s wrong with me? Has cancer stamped out my capacity for empathy?

Walking back to the parking garage, I suddenly realize that I’ve missed the whole point of the workshop. Those other cancer survivors can’t give me answers. Just like them, I have to muddle through my own particular story. My questions aren’t going to be the same questions that some other survivor will have.

This is the secret: There are no secrets to survivorship. I’ve got to find the answers for myself.

Drat.

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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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3 Responses to Survivorship Secrets

  1. I’ve often felt the same way when talking to other survivors. There’s either the very cheerful, ridiculously optimistic ones who talk about being cured (when there’s really no cure) or the ones who are in the midst of an agressive mess who are angry and furious with the entire health care system and trying to figure out the “non-traditional” routes (vitamins and vegan diets, etc.). I’m always unsure of how to talk to either of these sides of the cancer equation. Me? I’m up, I’m down. Most days I’m up and just happy to be done with treatment. Most days I’m optimistic, other days I panic a bit when someone randomly asks me if I’m now “in remission” (how the heck do I know?). I agree, we’re all just muddling through, figuring out our own path. Thanks for your honesty.

  2. michelle says:

    OH, this is exactly the dilmena I face as well. Two years into a diagnosis and i have not once attended a support group and only reached out to 3 or 4 survivors. you will be #5. the cancer journey is like all of life, so individual so nuanced based on our own way of living. as a journalist, your job is to capture stories, but as a survivor, it’s to make your own. I so, so appreciate this reflection. Living the miracle.

    • Ragini Pillay says:

      SURVIVORSHIP SECRETS?…eish, tough one!!!!..i was diagnosed with stage 3 breast cancer in April 2012. Had a lumpectomy, cancer spread so had a mastectomy of the left breast. had my chemo and 25 radiation treatments now on TAMOXIFEN for five years!..side effects hectic…i guess i survived due to the amazing support of my husband , mum, son and daughter in law and my two brothers and their wives and a load of very special friends, my colleagues at work and my boss.
      Being diagnosed with cancer is UGLY. But, as long as breast cancer has not mestastisized, there is a possibility of surviving. I lost my hair…bought a wig… hair grown back now but curly instead of the straight hair i had. the best way of surviving cancer is when you have come through all the treatment, just believe that it is a BONUS to be alive…dont worry about how its changed your loooks as that is just an external appearance. your BEAUTY is within you. You start surviving when you appreciate the value of your family again, even the sky and nature around you is something beautiful which you may never have paid attention to before.SURVIVORSHIP starts for you and your family when you realise that “THIS TOO SHALL PASS”. Do not make
      your Cancer your whole life, instead extend those energies to your family and let them enjoy the fact that you have survived and are still around for them!!!!!! To ALL breast Cancer survivors, in particular, congratulations, you have SURVIVED, just continue to LIVE and ENJOY your LIFE “one day at a time”.!

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