IT HAPPENED TO ME: I Had A Double Masectomy At 38

Breast cancer is no longer your mother’s or grandmother’s disease. It is striking younger women with more frequency.
Publish date:
January 27, 2014
healthy, radiation, chemotherapy, Breast Cancer, double masectomy

Breast cancer has an affinity for my family. It won’t leave us alone, really.

My mother, aunt, and paternal grandmother are all survivors, and it took my maternal grandmother’s life. So I always kind of suspected the decks were stacked against me. And this past June, when my friends were worried about their bikini bodies, I was getting my diagnosis. At 38, I was about to start fighting for my life.

The lump (that I was never able to bring myself to touch again) was discovered in a routine physical, in my right breast, and the biopsy confirmed what I already feared. The hardest part was not hearing the word “cancer.” It was forgiving myself for not finding this sooner myself. Somehow I’d completely missed it during my totally sporadic, half-assed self-exams. I felt like a failure.

When you get a cancer diagnosis, it’s like someone puts you on a track, with a blindfold on, and fires the starting pistol. You just start moving, quickly. Paperwork, prodding, pokes. An endless circle. Things are confusing, you receive staggering amounts of information, and you have to absorb it all to make decisions that will change you mentally and physically forever.


And during all of that, you spend most of your time reassuring others, hoping some of it will rub off on you.

After a deluge of appointments, blood work, a second biopsy, and additional tests, I settled on having a double (bilateral) mastectomy. The choice was mine, for this or a lumpectomy, but for most of my life I’d hauled around boobs I couldn’t wait to reduce (even if this was extreme), and by the time you’ve gotten to this point, you pretty much want to walk away from boobs forever and ever. Amen.

My double mastectomy was my first surgery. Ever. I had never so much as broken a bone. So, nothing like jumping in with both breasts!

I had nothing to worry about. From the beginning, I was under care that exceeded my expectations, with the very best surgeons, nurses, oncologists, radiologists, and support staff, who not only excelled at their jobs but also their bedside manner. My breast surgeon, Dr. Jamie Caughran MD, is nothing short of extraordinary. She saved me in more ways than one.

The mastectomy took about three hours, with my breast surgeon and plastic surgeon working together. One taking away breasts, the other reconstructing with implants (saline now, silicone later), so that by the time I woke up in recovery, I had some pretty enviable breasts. For not being breasts. Without nipples. Cancer notwithstanding.

But, boy, are they perky.

I was in the hospital for less than 24 hours, for which my insurance was billed $55,832.85 (not including the surgery itself). Ouch.

In the weeks following, I spent recovery being cared for by angels (my mother and my aunt), visiting with an unending wave of visitors, admiring myself braless in a T-shirt, and walking around like Frankenstein.

And then, the hair. Emmy-worthy melodramatic over-emotional days and nights fretting about losing my HAIR. On top of which, I was angry at myself for even caring about something so seemingly vain. All of which culminated my unexpected comfort with the GI-Jane buzz cut my friend lovingly shaved me down to. Cancer takes control of so much of your life. I was not going to let it take my hair. And I found out quickly, I’m kind of cute, with or without it.

Whereas the hair tormented me, chemo terrified me. I mean, no one talks of chemo in glowing terms. “I go for chemo today! High five!”

I had eight rounds of chemo infusions scheduled, one every two weeks, four months in total, two different “cocktails.” August through December, sun through snow. Oh, my God, I was going to do this forever.

Most people know chemo will make you lose your hair and get fatigue. But you may not know the potentials behind door number three: skin so dry it cracks, mouth sores, nail loss (yes, the nail falls off, fingers and toes), menopause, and hot flashes. Dreadful, relentless hot flashes like you’re stuck in the nine circles of Hell. You’re cold, because you’re bald, then hot from the hot flash, then cold from being bald. Dress in layers, because you’re going to do a lot of stripping, and redressing.

The infusion itself is time-consuming. Cancer is such an inconvenience really.

Infusions last from three to five hours, unless you’re like me, and the port that’s been surgically placed by your collarbone to administer the chemo doesn’t work for shit, in which case, you get a bunch of blood thinners and about two extra hours in the chair. But most (not all) people don’t get the nausea now. So there’s that. If you’re lucky. And that’s a biggie.

Infusion time, for me, was a time to just let things go, and relax (or if they gave me Benadryl, for the antihistamine, pass out cold). You can relax, really, once you get through the first infusion where you’re completely freaked. After that, it’s five hours that you may as well read a book, catch up on thank you cards, or engage in another hobby that you never make time for otherwise. It’s really kind of peaceful, if you allow it to be.

It’s the hangover that’s a bitch. For me that started the next day, and I slept like I was in a coma. Also kind of delightful. The banging headache when I woke up, and other side effects, were not.

The end of chemo came in the blink of an eye. The time had gone incredibly fast, perhaps because of the sleeping, and it was a time to celebrate this milestone accomplishment in the treatment process!

Short-lived, this celebration. Radiation was waiting.

And it got here soon enough, and swept in with a new wave of emotions. Until radiation, I managed to get through most of my cancer treatment with a skip in my step and a smile on my face, surprising those around me, but radiation broke me. Five days a week for six weeks, I go in, and intentionally put my body through poisoning people suffer from when they get bombed (low levels, sure, whatever).

And all I have to show for it at this point is a deflated boob (to get it out of harm’s way), and four very bad-ass tattoos that look like freckles.

I stopped crying on the radiation table after the first week. I’m halfway through now.

My hair is starting to come in, rapidly. It’s soft, like baby hair, and each new look in the mirror feels monumental. I may put one of those baby Velcro barrettes in it because I can.

I continue to meet with a support group, the Young Survivors of West Michigan. It is a group designed to support young women fighting and surviving breast cancer. Because breast cancer is no longer your mother’s or grandmother’s disease. It is striking younger women with more frequency. The median age in our group is 37.

You do not have to have the BRCA gene to get breast cancer at an early age (only one person in our group has it), or have a family history. The women in this group are beautiful, athletic, conscious people who happened to have gotten cancer. Some were getting mammograms, some were doing self-exams. They are also total goofballs, and I love them. I look forward to every meeting, and life-long friendships.

My point is not to panic people, or send throngs of people out for a mammogram unnecessarily. But you can get to know your body. Learn how to do an exam. Make it a routine. Know when something isn’t right, and go have it checked. Don’t assume that because you’re young, it won’t happen.

It can happen. It did happen. It happened to me.

And now, I eat better, I watch the cosmetics I use and household products I clean with. I use organics whenever possible in an effort to keep my life free from the chemicals I can control. That is how my life has changed, habit-wise.

But I am also stronger than I was a year ago, and more confident. I’ve grown closer to my already tight-knit family, and I have learned to become a better friend by observing those who were so good to me. I’ve swan-dived outside my comfort zone, and tried new things. I have found fulfillment in my chance to give advice and counsel, to those that come after me. I am perhaps the happiest I have ever been.

So while cancer is never desirable, it is not entirely negative. And it is not necessarily the end.

It can, in fact, be just the beginning.