Comments on comments

So far, 91 people have weighed in with their opinions about the cold cap story that went live on MSNBC Monday. The story led with the clinical trial in which I’m participating, the one that uses a supercooled cap to help me keep my hair during chemotherapy. The comments following the MSNBC story fall into a few categories:

1) This story reminds me of a personal experience that was a) good or b) bad. If a), I’m thrilled; and if b), I’m upset about the idea that a cold cap can preserve hair during chemotherapy.

2) I had chemotherapy and I lost my hair and it was fine. Buy a wig. Wear a scarf.

3) It’s stupid to try to save your hair if you risk a future recurrence of the cancer. Is saving your hair worth losing your life? Can’t cooling your scalp increase the risk of a brain metastases?

4) This is totally great. I would love to try the cold cap for myself/my sister/my mother/my friend. Hurry up, FDA.

I won’t try to address the first group. Over the years, I’ve learned that it’s fairly futile to argue with someone who has a passionate opinion based on personal experience.

As for the joys of wigs and scarrves, I’m happy if that works for some women. For all breast cancer patients, this is an experience that turns you into a warrior. I know and respect several women for whom losing their hair was a turning point that made them stand up and roar in determination. I applaud them. But I know many other women for whom the hair loss is a devastating blow. Breast cancer takes so much from you, It trashes the sense of invincibility that helps us move through our lives. It hampers your ability to make a living as you once did. It can take one or both of your breasts. It can take your ability to have children. It messes with your sense of yourself as a woman. It complicates your sexuality. After all this, many women feel, losing hair is just the final straw. I am one of this latter group.

Hair is not trivial. It is central to one’s appearance. This is not vanity; it is just reality. If you see a bald woman on the street, you do a double take. You’re lying if you say you don’t. Why lose your hair if you don’t have to do so? Why add the extra stress of that “badge of cancer” that so freaks the man on the street? If I had had to lose my locks, I would have dealt with it. I really would have liked to try henna designs on my scalp. But I’m tremendously glad that I can save the henna for another day.

But what about the risks? Some commenters mentioned the possibility of brain metastases. To them, I would point out that the blood/brain barrier is not in your scalp. The cancer cells need to get through the blood/brain barrier to set up shop in your brain. The cold cap does not supercool your whole head – what a terrifying thought – it just cools your scalp.

There’s a history to this fear of brain cancers: One of the first chemotherapy studies, beautifully described in Siddhartha Mukherjee’s book, The Emperor of All Maladies, was done on leukemia patients. They all went into remission for several months, only to relapse with devastating and mostly fatal brain cancers. But this was more than 40 years ago! It was before combination chemotherapy, using several drugs to fight the cancer, was standard. It was before advanced imaging technologies made it possible to monitor patients and identify cancers at a very early stage.

The most common metastasis in breast cancer is breast to bone. Breast to scalp metastasis is incredibly rare, according to my oncologist Dr. Hope Rugo, who is a world-renowned researcher and clinician. And they’re going to watch those of us in this trial. And I assume that doctors carefully watch the scalps of women who use the Penguin Cap, the dry ice system that is already available for women who are willing to pay for it.

So I throw in my lot with the last group of commenters: The DigniCap is what Martha Stewart would call a “good thing” I’m writing this with my hair tied up in a bandana. It’s good to have it there, not because I’m too vain to live without it but because it’s nice to have one shred of normality as I face another chemotherapy infusion next week.

Come on FDA. Please allow a larger trial so that this system which has been used for years overseas can be available in the United States.

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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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7 Responses to Comments on comments

  1. Heather, another terrific post that speaks to non-cancer patients. As with so many other issues in life, there are different solutions for different people, with different perspectives and priorities. Your post beautifully highlights a surprisingly complex issue with shades of gray.

  2. Kathy says:

    Hello Heather, just wanted to let you know that I discovered your blog from reading the msnbc article and I really appreciate your candor on the subject. I am presently undergoing chemotherapy for my 3rd round with breast cancer. I had a mastectomy in 1989, with no chemo or radiation at that time since my margins/lymph nodes were clear and the protocol back then was no further treatment needed. In 2003, I discovered a lump on the scarline, and after a lumpectomy, underwent 37 radiation treatments and took Femara for 5 years. This summer when I went to my internist for some asthma issues, he sent me for a chest x-ray since I hadn’t had one in a while. I have a total of 11 lesions in my lungs and 1 one my sternum. Metastatic breast cancer. Since I am the only girl in a family of boys, I always longed for a sister. Even though they would not have been my first choice, I have been rewarded with many sisters with breast cancer. We are a strong group, it’s just too bad there are so many of us. I’m am calling my current run in with cancer, my pothole – I’m going to fill that pothole with the love of family and friends, prayers, and faith in God. It’s all about the attitude you choose. I’ll keep you in my prayers. Kathy

    • leftbreast says:

      Kathy,
      I’ll keep you in my prayers as well. You are right, what my husband calls my “bosom buddies” are a strong bunch and it is scandalous how many of us there are. Thank you for reading the blog, and stay strong.
      Heather

  3. Wendy says:

    I think every woman needs to face life’s events with the tools that work best for her; and our society is gradually learning this very important thing– even on clothing labels, “one size fits all” has, for the most part, been modified to read “one size fits most.” Whatever works, as they say. Bravo to you for knowing what you need.

  4. Kay says:

    I had mastectomy on my right breat and am currently undergoing chemotherapy. I wish I had known about the cold cap before I started my treatment. A hair loss is one of the most devastating side effects of chemo. I think, although chemo sucks, if we didn’t have to deal with the hair loss, chemo is tolerable. With other medications to reduce its side effects, it is possible to have a somewhat normal daily life while undergoing chemotherapy. However, the hair loss is so appearant that it reminds you everyday that you’re a cancer patient. I wear a wig and a breat prosthesis when I go to work. I work at a very conservative office, and I can’t wear a hat in the office. Let me tell you, wearing a wig all day long is not comfortable either. It also takes a sense of woman-ness out of you… Breat cancer takes so much out of women – breast, hair, fertility, strength, and confidence you once had. As you said, I wish I can go to work with a bold head and one flat chest without worrying about people starring at me or looking at me with pity. That’s the reality. So to make my life a little easier and normal, I wear a wig and a prosthesis.

    Good for you for participating in the study. Thank you for bringing up this topic and raising awareness. I hope you end up with all of your beautiful hair in tact at the end of your treatments. I hope someday the cold cap will be available to all cancer patients who’re undergoing chemo in the U.S.

    Happy holidays to you and your family!

    Kay

    • leftbreast says:

      Kay,
      I am in awe of your continuing to work through chemo. You’re right, without the hair loss, chemo is tolerable, but it completely saps my energy. I agree with you, I hope that someday all cancer patients can say “no” to wigs if they choose to do so.
      Keep up the good fight!
      Heather

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