Meet a Breast Cancer Helpline Volunteer: Karen

Meet a Breast Cancer Helpline Volunteer: Karen

1. Why did you decide to be a SHARE Breast Cancer Helpline volunteer?
Marjorie Schwartz, a Helpline Volunteer and Mentor,  suggested I volunteer for the helpline. I was flattered to be asked and after thinking about it and considering whether or not I could make a real commitment, I agreed.   

2. What do you like most about being a Helpline volunteer?
I had only worked on the helpline for a short time before the virus began and since then, I’ve received fewer calls. When a caller needs expertise or advice beyond my ken, I refer them to the appropriate peer. At this point, I’ve been following only one caller with inflammatory breast cancer, and she and I have cultivated a wonderful relationship with Marjorie chiming in as the oracle with real knowledge of treatments and standards of care. Also, I don’t mind difficult, repeat callers who just want to talk. People are so often lonely, frightened and sad, and they just need someone to listen. Some people speak more openly to a stranger, and I understand how frightening and painful this diagnosis and treatment are. We all do, that’s why we’re on the Helpline.

3. When were you diagnosed and what was your diagnosis?
I was diagnosed in 2017 with HR+ cancer, a small tumor in my right breast. I had a lumpectomy and because the oncotype was on the brink, had chemo “light” for 8 months. Treatments were a month apart because chemo light’s side effects were devastating to me, and I begged for time to feel marginally human. I’d been taking hormone replacement therapy (HRT) for many years, and before that, consecutive birth control pills so that I never got my period. Of course, my gynecologist was distressed at my diagnosis, both of us certain enough that HRT caused my cancer. It was a gamble and I lost. I immediately stopped the HRT when I was diagnosed, but when I met with my surgeon the first time, he asked me how I was feeling having quit the hormones. When I answered “not great” he told me to go back on them and said, “I don’t want you in that kind of shape for surgery.” So, I resumed but then stopped right after surgery. There was a lag, maybe a month between surgery and starting chemo. Stopping HRT was as ruinous to me as anything else. For a long time, I felt like my soul was gone…I don’t know how else to describe it. I used to say to myself out loud hang on, just hang on. It’ll get better someday, this will pass.

4. Where are you now, as far as your breast cancer “journey?”
I am unable to take AIs because of osteoarthritis. I tried Tamoxifen for a month, but was beet red from my waist to my forehead. I remember standing on a subway platform in the summer, having hot flashes that were so severe I figured, well, this must be it. When my oncologist saw me, he said “stop it, just stop.” On Tamoxifen, I didn’t know which way to turn the key in the lock or whether to walk to the right or left to get to the subway.   I avoid the term “survivor” because first of all, I feel it rightly belongs only to the Holocaust, and second, because everyone on the street is a survivor, cancer or not.

5. In addition to volunteering for SHARE, what else do you do? What do you (or
did you) do for work?
I’m a writer, a poet, mostly, but also an essayist. I have three poetry books and another on the way. I came to NYC from Baltimore after high school to study with The American Ballet Theatre. I performed for a few years then changed course. I moved to Charlottesville for a time, lived in a radical student commune, established women’s liberation “consciousness raising” groups and co-founded the Experimental University. After a few years I returned to NY and worked in the music business, managing clubs like Max’s Kansas City and the Other End on Bleecker Street. Now and then, I wrote for the Soho Weekly News. Through the years I’ve had various jobs – in publishing, working for the City of New York, New York City Ballet, in health care, education, historic preservation, etc. I was an adventuress and in the 70s and 80s, New York was my oyster. I would live in Rome if I could, but the best I can do at the moment, is study Italian. I’m currently editing a book by Bonnie Stone, a trailblazer in New York City government and key player in establishing the first methadone clinics, the first homeless shelters…to mention but a few remarkable achievements. The book is a memoir, but really a history book, telling the story of a city steeped in fundamental decency, a city both flawed and glorious performing the ethic “I am my brother’s keeper.” It’s a book that demonstrates good government.

6. What do you do for fun?
Fun? I’m a reader and usually have several books going at once; of all kinds. I’m a lifelong Faulknerian and every August, re-read a Faulkner novel. I have a multitude of albums of all kinds streaming from Amazon Prime Music into my Bose speakers.  I find cooking soothing and sheltering in place here, I’ve  taught myself to make some pretty elaborate Moroccan dishes. I’m incapable of relaxing in the sense of lounging by the side of a pool (a good thing since I don’t have one). I always find there are not enough hours in the day. In normal times, I have dinner with friends, occasionally go to the ballet, a concert, theater. Now, after Rachel Maddow, I watch films on the Criterion Channel -- which sustained me during chemo – or binge-watch  “Law & Order SVU”.

7. What did you learn about yourself while going through your breast cancer experience?
What have I learned? Nothing new, really – having breast cancer reinforced the knowledge that all our days are numbered and my understanding that everything, but everything, is in God’s hands. Wait…no, I learned to surrender.

8. What priorities did you have before and after?
It is hard to be sick and alone. That said, it’s not even close to as hard as being with someone but feeling alone. Lifelong friends kept me company and tended to me throughout treatment, but at the end of the day, I was and am by myself. I cherish my solitude at the same time as I feel myself containing millions. I’m a practicing Episcopalian and grateful to be a person of faith. I study theology and love my church’s rituals. I’ve believed in God since I was a child, yet do not have an evangelical bone in my body. And for sure, some of the finest people I’ve known have no faith at all.  I believe in meeting people where they want to be met. When I talk to women who are afraid or in pain, I listen…if they reveal any kind of faith, we can work with that…if not, not. In the end, kindness is the only thing that matters.

National Helpline: