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The Cancer That Scares Me Most


I have cancer (chronic myelogenous leukemia—it’s been in a deep, dark remission for 10 years) but the disease I’m most afraid of these days is breast cancer.  (Skin cancer is a close second.)

study released yesterday shows that breast cancer rates in women aged 25 to 34 has increased over the past 33 years. The increase is not huge but the researchers, who looked at data from 1976 to 2009, say it is statistically significant and that young women are the only subgroup that showed such an increase. I don’t mean to be a media alarmist, but I do want to talk about this today. The news isn’t good because when young women are diagnosed, the cancer is often more aggressive. The researchers don’t know the reason for the uptick, but they plan to do more digging. Of course we all know that a sedentary lifestyle can increase cancer risk but for those of us who exercise and eat healthy and still get cancer…is it just bad luck? Our environment? Chemicals?

I used to think breast cancer was one of the easier cancers to get. You find a lump, you get it cut out, you may not even have to do chemo and you’re done. (As someone who does not have anything that can be removed, I used to have tumor envy—insane, I know, and I am way over that.) But I now realize how naive that thinking was. I have seen too many people go through way too much with this disease. And way too many lose their battles. Just last month I helped one of my best friends plan a memorial for her mother (also a dear friend) who lost her long and valiant battle with breast cancer. She got it, beat it, but then it came back. I remember when my friend called me with the relapse news thinking, $^!&@. Because I just knew. 

What hits closest to home about this study is that the women in this category are right in the sweet spot for becoming moms. I remember when I was diagnosed at 23, one of the first things I thought about was whether I’d be able to have kids. Nothing is more devastating than being told you have cancer and in the same breath hearing that your dreams of motherhood may never come true. I’ve met a disturbing amount of cancer patients who have to put their family plans on hold because of treatment. I probably hear from one or two a week asking my advice. It’s heartbreaking. I especially feel for the breast cancer survivors who have to take Tamoxifen for five years and can’t get pregnant while on it. If those five years happen to be 35 to 40, having a baby may be impossible. That said, when I hear the success stories of survivors becoming moms—whether it’s through surrogacy or egg donors or adoption or like the survivor I connected with over the weekend who wasn’t sure she’d be able to conceive at all and then got pregnant the first month with identical twins—I am elated. I am inspired. And I am hopeful. 

But the demographic in this study also has to deal with the flipside—getting diagnosed when you already have kids, which I can’t even imagine. You know how hard it is to manage your brood when you are healthy as a horse? Can you even fathom doing it while barely being able to get out of bed or, worse, while lying in a hospital room? And yet this happens all the time. My sister did it and when I picture her sobbing as she said goodbye to her then 18-month-old son so she could live at Sloan Kettering for a month for her stem cell transplant, my chest feels like it will cave in.

Fortunately Melissa's story has a happy ending, complete with two more kids. But many others don't. Two of my closest friends recently lost friends of theirs to cancer (both happened to be blood cancers, a fact that is never lost on me). Both women were mothers who left young children and husbands behind, and I can’t even think about them now without tearing up. It’s just the worst kind of cancer story around. That said, there are plenty of good ones and I try to focus on those as well. You guys may remember the article I wrote for Parenting in October on moms who kicked cancer’s ass. One of the women in the piece, Kristin Casillo, is a breast cancer survivor and someone I actually went to high school with (we reconnected over Facebook—thank you, social media!). She was diagnosed with a very aggressive form in June 2011 at age 35, when her daughter was four and Kristin was 24 weeks pregnant with her son. She had two sessions of chemo while pregnant and was induced at 36 weeks. A week after he was born, she started chemo again. Her treatment included getting a double mastectomy, eight rounds of chemo, 30 rounds of radiation, and the removal of her ovaries and fallopian tubes (she wound up testing postiving for the BRCA2 gene so she had this surgery as a precautionary measure) and other horrors I’m probably forgetting. Because there was just no way she could do it alone so she had to sell her house and move her family in with her parents back in her hometown (which is also my hometown, and now they are in their own house right near me and our kids will go to school together—yay for me!).

“The hardest part was not being able to fully take care of my kids the way I always have and always want to,” Kristin says today. “I felt so helpless. I took a short break from chemo before I gave birth to Nicholas, but started back a week after he was born. After I had my double mastectomy, I couldn't pick up Nicholas for 6 weeks.  It was heart-breaking, because he was only 3 months old! My mom took a leave of absence from work in order to care for my two kids. I tried to do whatever normal things I could, like reading stories to Sophia at bedtime or coloring with her, but there was little I could do for Nick.  I felt like I missed that special, new baby time with him.  It makes me cry just thinking about it.” 

But, as with most things, there is a silver lining. When I asked Kristin how cancer changed her parenting style, she had this to say (yes, I am taking notes):

“I am definitely more laid-back in a lot of ways. I used to stress about everything—cleaning the house, making sure Sophia had the perfect outfit, etc.  I was much more organized and structured.  Now I pick my battles instead of trying to conquer it all. Being happy, healthy and (quite frankly) alive for my kids is much more important than whether Sophia goes to school dressed in a crazy outfit of her own choosing. My kids have taught me life goes on, with or without cancer.  You can't curl up in a little ball all day and cry your eyes out and have an extended ‘why me’ pity-party.  Believe me, I tried.  When I was first diagnosed I was a total and complete mess, but my kids needed me to be their mom.  So, I had to start living in the present and stop dwelling on whether I was going to die.  Once I started doing that, I was much happier. And they were, too.”

And the best news of all is that Kristin is doing fantastic now. She goes for what will (hopefully, fingers and toes crossed) be her final surgery next month--the 7th in 18 months. She’s been back at work for a while now, she’s feeling good and, when I saw her recently, looking great. I wanted to end this somewhat Debbie Downer post on a positive note and Kristin’s story certainly is that. I think it is so important to share the hope and the positivity because there's just no getting around the fact that cancer sucks.

A healthy, happy Kristin with her beautiful family

I’m not sure what the answer is here. Except to take good care of yourself (check out our health pledge here), and to cherish as many moments with your kids as possible (I do not expect anyone to cherish the meltdowns and food flinging), never taking the good stuff in your life for granted. And to find good causes to donate your time or money to so that we can put a stop to these diseases once and for all.