Amy Yelin, 49, is a mother, writer and breast cancer survivor living west of Boston. She had no family history of breast cancer, although her mother died of ovarian cancer in her 60s. Amy’s disease was discovered in a routine mammogram six years ago. In honor of Breast Cancer Awareness Month, she shared her survival story with JewishBoston.
It was fall 2012 and I was working full-time in the communications and marketing department at Lahey Clinic. I wrote a lot about breast cancer prior to my cancer diagnosis, which I would say helped a little bit, in that I wasn’t completely ignorant while going through it.
On the day I had a mammogram scheduled, I also had to go to a presentation by our CEO, as I was writing for him at the time. I remember being at the presentation and thinking, “This is really interesting! Maybe I should skip my mammogram.” Then, on second thought, I decided no; I better not. I was typically good about getting my mammograms, as I’d been getting them even before I turned 40 due to my fibrocystic and dense boobies.
I guess I was also a bit of a hypochondriac too. Once, a long time before Lahey, I was temping at New England Medical Center (NEMC), doing medical coding, and I was convinced I felt a lump under my arm, and I remember going to a clinic at NEMC to get it checked out. A young doctor seemed concerned, until an older one came in and laughed and said, “It’s a vein!” That was a relief.
Anyway, I did the mammogram at Lahey, and I got “the call” a couple days later…on my birthday, actually. My kids were home from school that day and I remember the nurse on the phone was saying, “I’d like you to come back so we can double-check something.” I’d never gotten that kind of call after a mammogram before, and it really freaked me out. It was a nauseating feeling. But my kids were home from school, and I promised to take them to the movies, so we had to kind of carry on. We went to the Burlington movie theater, and I don’t remember what we saw—maybe “Wreck-It Ralph”? But I had a hard time concentrating. My boys and I took some photos in a photo booth in the lobby, and I still have one image from that day on my fridge. I look at it occasionally and think: It was that day.
When I went back for my follow-up appointment, I was in a little windowless room at Lahey, where you go to have “the talk.” That’s when a doctor told me the news. It was a terrifying feeling. I think I felt nauseous, if I remember correctly. Yes, it helped that I worked in the medical field and knew some of the players. But still, it was terrifying first hearing the word “biopsy.”
Unfortunately, the biopsy came back positive, which only led to more tests, including a breast MRI. This sort of not exactly knowing what was going on went on for a couple of months, until it became clear that while I did not have a lump, I had scattered cancer cells throughout much of my breast. And so the plan forward was to remove the right breast and get an implant. Fortunately, I happened to have the right-size boob for an immediate implant. I did just the right side. Prior to going into my surgery, all the health care folks thought my cancer was very early stage—what’s called stage zero. My doctor from another local Boston hospital where I had my surgery actually said to me, “We’re almost 100 percent sure we won’t have to remove any lymph nodes because this is so early stage.”
So I went through the surgery, and I woke up to my surgeon standing over me, telling me, while I was still groggy, that she’d removed a number of my lymph nodes. Eleven, I believe. That was kind of shocking, because everyone had me convinced that the cancer was so early.
On a positive note post-surgery, the doctors couldn’t believe I had zero pain as the medications wore off! They were shocked. But there’s a book and CD that people swear by called “Prepare for Surgery, Heal Faster: A Guide of Mind-Body Techniques” by Peggy Huddleston. It offers really great meditations. It worked for me. I did the meditations, and I swear it helped.
Then it was all about planning the next steps and healing from the surgery. Eventually, after my lymph nodes were biopsied, I went from being a hopeful stage zero to a stage 2b or 3a, depending on who you asked. It was so nuanced.
After surgery came chemo, which terrified me. I had visions of people throwing up in buckets while getting treatment, like in the old days, and it just being really, really awful. I had a panic attack at my first chemo session because I was so freaked out. After that, things calmed down, but I did have a few weird problems along the way. Toward the end, I couldn’t say certain vowels! According to an ear, nose and throat doctor, the chemo had affected my throat, and I suddenly had the vocal cords of an 80-year-old! Fortunately, that eventually resolved.
Losing my hair during chemo was a really big deal. I remember watching a show called “Parenthood,” and the mom in the series had cancer. A friend told me to watch it, as my hair had been falling out everywhere and I was thinking I should shave it. So I watched the show and cried with the character, and then I went to the bathroom and started to shave my own head…and I couldn’t do it. I started crying. Fortunately, the next day, a wonderful friend of mine came over and shaved it for me! She made me laugh the whole time, and she bought me my wig. I was so thankful for that.
After chemo came radiation. I almost had a nervous breakdown by the time I was in radiation! I was working and going through treatment, and toward the end it was just a lot and I broke down one day in the radiation oncologist’s office. It was a necessary release.
After my surgery, I ended up leaving Lahey and freelancing. I noticed at some point that while I used to be able to synthesize information and be a go-to person, I was struggling more with writing. It was weird, but I still didn’t think there was really anything wrong. I thought I was just stressed out. Then I returned to a full-time job at another local organization, and it was a disaster.
I went out on disability, which was nothing I ever dreamed would happen to me. I had been a superstar at Lahey. But at this other job, post-treatment, I really struggled. Then I remember driving home one night, and I couldn’t remember the field where my son was playing soccer. It was a field I’d been at a million times, and I remember just feeling like, what the hell is going on? What’s wrong with me?
A friend of mine referred me to a doctor at Brigham and Women’s who specialized in working with “chemo brain” patients. I had lots of cognitive testing and MRIs, and eventually received a diagnosis of mild cognitive impairment. It’s not related to Alzheimer’s, though pre-Alzheimer’s is also called mild cognitive impairment. The theory is that my symptoms are related to my treatment, so now I see a neuro-oncologist at Mass General and a cognitive rehab person at Emerson Hospital.
That’s the great thing about living in this area—there are so many medical resources. I’m so thankful for that. Looking back, it’s just all been a bit unbelievable. I still sit here and think, how did I get here? From who I was before, working at Lahey, to who I am now. Even though I’d written about cancer, I’d never even heard of this type of cognitive impairment that can stick with you for years after treatment. I guess you never think about your brain until your brain doesn’t work, right?
But, knock on wood, today I remain cancer-free. I still go for my mammograms every year. Last year I got called back, but it turned out to be nothing. Overall I try not to worry too much about my health. During treatment, the writing I did via my blog was really helpful for me: the healing, the finding the humor in it. I don’t think about cancer all the time, although I do think about it when something is going on physically that’s unusual—OK, maybe then I get a little worried. I currently have lymphedema, swelling in my right arm, but I’ve learned to live with it, for the most part.
Overall, what got me through the cancer journey was the support system I had. My family and I couldn’t have done it without the friends and family who helped us. My friend Alison, for example, did a meal train and put a whole notebook together for me where I could keep my reports and images, and all things cancer-related. A woman I hardly knew made me the best gluten-free muffins! All that really helped. I’d tell other people going through similar experiences, don’t ever say no. Embrace it when people want to help. It was so moving to see the community come together—some Jewish, some not—and I’m so thankful.
To read more of Amy’s work, visit her website.
