Sisters are doin’ it for themselves

In the beginning—it seems centuries ago, but was only two and a half months—I thought that breast cancer patients didn’t talk. I was wrong: They don’t talk so much to outsiders. They don’t talk in waiting rooms. But they talk a lot to each other.

A week or so ago, I log on to breastcancer.org, one of many on-line communities for breast cancer patients. A friend and breast cancer survivor suggested I do this first thing, but I just don’t get around to it. When I do, it’s dizzying: 77,520 members discussing 63,802 topics in 74 forums. That’s not counting the live chat boards, the blog, ask-the-expert online consultations. Yesterday, I go to an informal lunch with fellow breast cancer patients.

I feel like such a newbie; I feel that after all the reading I have done, I still know nothing, or, to be more charitable, know very little. So far, I only just scratch the surface of the breast cancer conversation, and there are prohibitions about making specific stories public. But here are some of the things that breast cancer patients talk about:

Women with stage IV disease, those whose cancer has spread and who are unlikely to be included in the breastcancer.org “Stories of Hope” section, talk about how much they resent the pink ribbon breast cancer hoo-hah, how no one seems to want to look at their situation because it’s scary, how no one wants to dwell on the fact that some 45,000 women a year die from breast cancer. I’ve been joking almost since the beginning that breast cancer is the “Beanie Baby” of disease—cute, common, and curable—but for these women that is not likely to be the case. No one is going to put their picture on a cereal box. I don’t blame them for being ticked off. Breast cancer rips off women, often women who are very young.

Women who’ve just found a lump, or who’ve just been referred for a biopsy, talk about how scared they are. How they don’t know what to do. How they are not sure whom to tell. I am amazed by the outpouring of advice, and courage and information with which those further along “in the process” respond to these newly vulnerable women.

Women trade stories about clinical trials, and the level of their knowledge is deep. They seem to know everything about taxol and Adriamycin and Cytoxan (the most common components of a breast cancer chemo cocktail.) They know about radiation, and hormonal treatments and what it’s like to go through “instant menopause” so that you don’t bathe your cancer in hormones that make it grow.

They talk about chest expanders, things placed under the chest wall to make a space for reconstructed breasts. They talk about implants that fail. They talk about the decision to not try to fix failed implants and they talk about wearing “party boobs,” things you stuff in your bra to look halfway normal. They talk about implants that flip upside down and have to be redone. They talk about nipple tattoos, i.e. tattoos meant to look like an areola. They talk about nipple conserving surgery, and about how sometimes skin can die and go black after plastic surgery.

They talk about how much lymph node biopsies can affect the range of motion in your arm, about how the nodes are clustered together, kind of like grapes, and that sometimes, when they try to pull out one to check for metastasis, a whole bunch come out. They talk about the drains that are put in if you have several lymph nodes out, they talk about the pain and the yuck factor of those drains. They talk about scars and scar gel and which flaps of skin were used to reconstruct a reasonable facsimile of a breast. They talk about the size of their tumors.

They talk about hair, and wigs, and hats, and scarves, and how long it takes for hair to grow back after chemo has ended. They wonder if maybe, as sometimes happens, the hair will grow back a different color, or curly if it was straight or vice versa. I am comforted that I am not alone in being more freaked at the idea of losing my hair than of losing a boob.

They talk about medical marijuana. About how you can be vomiting for 36 hours after chemo and take two puffs from a joint and feel almost OK. About how it’s better to eat the stuff than smoke it, since you know, smoking and cancer aren’t so good together.

Almost everyone seems to talk about being annoyed with “breast cancer awareness month,” now upon us. We’re all quite aware of breast cancer, thank you. Given the NFL game last Sunday in which the players wore pink ribbon accents and the pitch from a gourmet catalog yesterday urging me to buy “pink pears,” and breast cancer grocery bag I got yesterday, I can’t imagine how anyone in the country could be ignorant of breast cancer. One woman, now gone, went through a Target store one October and photographed her bald self with every product that had a pink ribbon on it. It took a long time, so the story goes.

They talk about nutrition and stress and alcohol and exercise. They wonder how pure you have to be to be healthy and whether you should let breast cancer not only take your breasts, but also your chardonnay and your occasional order of tempura or sweet potato fries or chocolate fudge brownie ice cream.

They talk about women who feel a lump but can’t scrape together enough money to pay for a mammogram. They talk about surgeons who don’t listen and are insensitive. They talk about surgeons who are wonderful and caring. They talk about other women with scary diseases, ovarian cancer for instance, who don’t have the almost absurd outpouring of support and money and programs that breast cancer receives.

They talk about kids, and husbands, and how hard it is on them. They talk about how hard it is to be 30 with a breast cancer diagnosis, or 40, or 50, or older. They talk about work and juggling many roles and fear. They talk about crying all night. They talk about friends who ask how you are, but really don’t want to know. And then again, they talk about fear, “The fear is killing me.” “What will I do with the fear?” “How can I stop feeling afraid?” “Is breast cancer ever over?”

And the most amazing thing, they don’t just talk, they hug each other. You see someone that you’ve never met, with whom you’ve exchanged maybe five emails and she hugs you as if you’ve know each other forever. You haven’t known each other forever, of course. But you know things about each other that even your spouses or your oldest friends don’t exactly know. You both know that buzzing you get in your ears when your primary care doc calls about biopsy results and says, “I think you need to come in.” You both know how weird “therapeutic” underwear and breast forms are. You both know how uncomfortable some people get when you’re open about your diagnosis. You talk. You listen. You hope that somehow those on the “outside” of this nightmare will understand.

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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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6 Responses to Sisters are doin’ it for themselves

  1. Sarah Goodyear says:

    Incredible post, my dear.

  2. Catherine says:

    You really summed it up. And there’s another website that is very private where women share (with photos) what reconstruction is really like. I remember looking for photos before my surgery, and all I could find were photos of breast “enhancement.” Reconstruction is not enhancement by any stretch of the imagination. And the women who post photos on that site (myself inc.) are trying to help women who are in the process of reconstruction know the real deal, which is often not pretty, but in the end can be successful.

    • leftbreast says:

      Catherine, I was looking for a new image for the home page of the blog, I’ve got this idea for a silhouette of a left breast, anyway, it brought up some truly horrifying images of women with inflammatory breast cancer, and half done reconstructions etc. What amazed me is that people would post such things on creative commons or Flickr. A private website, OK…

  3. Catherine says:

    Clearly, things have changed in 3 yrs. I could find nothing then. But maybe these women are brave enough to put it put there in the public domain–not only to help others who are going thru this, but to show how ugly bc really is. After all, mastectomy is just a euphemism for amputation.

  4. leftbreast says:

    Maybe you’re right Catherine, perhaps women want to get the truth out there. I’m glad that Erin doesn’t think that breast cancer is “real cancer” but I wish adults wouldn’t think that way. Swelling is going down, and my left breast definitely is looking funky. You’re also right about euphemisms. One of my favorites so far is: “excision cavity,” i.e. the hole they left when they cut out a big piece of my breast.

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