Madhulika Sikka, executive editor of NPR News, was working with her team on an interview with President Obama when she received her breast cancer diagnosis in 2010. Today, Sikka is cancer-free, and her new book, A Breast Cancer Alphabet, is here "for anyone who has been diagnosed with breast cancer and needs a companion."
The slim, beautifully designed volume is divided into 26 short sections and is aimed at helping both those dealing with a personal diagnosis, or the diagnosis of a loved one, make sense of their journey through "Cancerland."
From "A" is for Anxiety (over test results, treatments and everything in between), to "F" is for Fashion Accessories (scarves, hats and bold earrings can make you feel a whole lot better) and "W" is for Warrior (it's OK to be a woman with a disease instead of a warrior), Sikka's approach is unabashedly honest and wholly supportive.
We asked Sikka to tell us more about the little things—and the big things—that can make a difference for cancer patients.
What inspired you to write this book?
I actually started writing for myself, to vent and to sort out my thoughts and reactions to going through breast cancer treatment. As I talked to friends about it,they thought that there was something worth sharing and encouraged me to write more. My feelings about the disease and treatment were complex.
During your initial search for answers and information about breast cancer, were there any topics that seemed particularly taboo?
Not taboo necessarily, more like glossed over. For example, in my book I use the word amputation to describe the removal of my breast. We all seem comfortable with using the medical term mastectomy but if you use the word amputation people are shocked. Yet to me, that is exactly what it felt like. It’s funny that in this case the medical term is the less challenging one for folks to deal with.
You recently spoke out against the “cause marketing” that has become popular, especially during Breast Cancer Awareness Month, or “Pinktober” as some now call it. Can you tell us more about your thoughts on this issue?
I think that the breast cancer awareness movement was one of the most significant acts in women’s health advocacy in decades and I thank goodness for it. However, I believe we have reached saturation awareness. EVERYONE is aware of breast cancer. For me the question now is what are we doing to find a cure and while we don’t have a cure, how do we help people who are going through it? The commercialization of the awareness campaign has become off-putting. As someone who has gone through breast cancer I find it hard to make a direct connection between the disease I am going through and the entire NFL being clad in pink. If you want to use the language of the awareness movement, the battle to raise awareness has been won, now it’s time to amp up the battle to find a cure.
In the book, you point out that, unlike many other diagnoses, women with breast cancer are “expected to be upbeat,” during their treatment. Why do you think this is so?
I think it goes back to the socialization of the breast cancer awareness movement, and one of its tropes is that women can “fight” this disease and “kick it” almost as if it is a were a life passage one must pass through. I find this attitude troubling because it implies that if you do not survive that somehow you didn’t fight hard enough as if it were your fault. The writer Peggy Orenstein has described “Our Feel Good War on Breast Cancer” and I think that is a perfect description of what it has become.
You note that little things, like pillows, can make a big impact during the toughest days of treatment and recovery. What other small comforts do you recommend?
Yes, pillows were really important for me in helping me achieve some comfort during my treatment. There were other things that worked for me and it will be different for others. A friend, and fellow breast cancer patient, gave me a beautiful soft shawl to take with me to my chemotherapy treatments: I could keep myself warm and feel loved and protected by using it. We were also due a new mattress, so we went and bought one that got a tremendous amount of use while I was going through chemotherapy treatment.
Aside from reading this book, what advice do you have for people who want to be supportive of relatives or friends going through breast cancer treatment?
I think the most important thing to do is to ask the patient what they need help with, and then I think it is important for the patient to articulate what they need and to not be ashamed to ask for help. The greatest thing my friends did for me was to arrange food delivery. For close to five months, my family was fed by a rather large cast of folks who brought over nourishing meals on a regular schedule that they organized on a calendar. For my husband and two daughters this was one of the most important things that happened for us and probably the most helpful.
In your opinion, what’s the biggest myth about breast cancer treatment—and the most surprising truth?
The biggest myth about breast cancer treatment to me is that it is a fluffy pink “journey.” My breast was removed and my body was pumped with poison to chase away errant cells—that’s a pretty terrible thing to go through. I’m a pretty skeptical person, so I don’t think I had bought in to any truths beforehand so I think I’ll pass on the second part of this question!
Tell us about some of the unused contenders for certain letters that you wish you could have included. Was it difficult to limit yourself to 26 topics?
You know, it was actually hard to come up with all 26. When I first had the idea of an alphabet I wrote some sample essays and they made perfect sense. It was when I was faced with the prospect of going through the whole alphabet I realized how hard that was going to be. A few of my rejects were I is for Implant, A is for Angel and L is for Luck, not because I didn’t have things to say, but I found I was able to incorporate these ideas in other essays and find different things to focus on for these letters.
Were there any letters that you had difficulty coming up with a topic for?
The letters I, U and X for example were hard to come up with. And I will admit that what I did come up with were rather unorthodox responses, but I think I have managed to convey something useful in my final choices for these letters. The same with Z, which is almost as impossible to come up with as X!
This is your first book—was it difficult or easy for you to transition from journalist to author? Do you have any other books planned?
I had never thought that I had a book in me, more like a two page memo. If I had told myself I was going to sit down and write a book, I might not have done it. With the structure of the alphabet what I find I have written is 26 memos that turned into a book! I want to get this book published and in the hands of people I think could really benefit from it. I’ll see how this experience goes before I start thinking about anything else.
Author photo by Kainaz Amara
Illustrations by Roberto de Vicq de Cumptich