Why did you decide to be a SHARE Helpline Volunteer and Peer?
The members of my family have always been volunteers, and we have always dedicated our free moments to help children. I had also worked in a medical office and in my free time, and used to accompany patients, friends and acquaintances to medical appts, as a translator. Still do.
This was a little different. I had now become a survivor. When I first offered to volunteer for SHARE, I was assigned to the Development Dept. After a year I was asked if I would like to be trained for the Helpline. That was in 2008. I was trained by two great ladies: Barbara Krauser and Ilene Winkler. In the office I sat and was observed with our beloved Lilla Romeo. I became a passionate Breast Cancer Patient Advocate!
You work at the SHARE office in many capacities, including a Development Administrator, a Helpline Volunteer, and Peer. What do you like most about your volunteering with SHARE?
Yes, my first years at SHARE were wonderful. We helped each other. We ate together and had a rule not to speak about our work during meals. We weren't allowed by our colleagues to skip meals! We were a family. Also, we understood each other; 80% of us staff members, were survivors.
When were you diagnosed? What was your diagnosis?
Diagnosis came in 2005, three weeks after my husband died, during my yearly scheduled 30th mammography. I was expecting to eventually have breast cancer, so I was not in shock. Actually, was grateful that it did not interfere with my husband's illness. Even though I was BRCA negative, my mom, aunts, cousins all developed breast cancer. Diagnosis was lobular carcinoma - size: 4mm. Negative lymph nodes. Was advised by radiologist and surgeon that a lumpectomy would be in order. Because of my family history, opted for a mastectomy.
Subsequently consulted with three oncologists and was told that, because of the size of the lesion, I would not need any treatment. Perhaps, had I not been psychologically distressed about my husband's death, I might have followed the original advice, had a lumpectomy and then had radiation, which would have been the protocol.
Instead, seven years later, I developed a small dimple on my chest wall, fortunately noticed by my surgeon. Was tested and there was a recurrence. Again, no,nodes involved. After excision I underwent radiation. This occurred six years ago. I still see my surgeon, three times per year and stress that all mastectomy patients should continue to visit their surgeons.
Where are you now, as far as your own breast cancer “journey?”
Hopeful, but can't dismiss the fact that some colleagues who "began" with me, are now metastatic. If they can march on with courage, so can I. I would rather occupy myself helping others, rather than worrying about myself.
What did you learn about yourself while going through your breast cancer experience?
I believe that we must participate in the decisions regarding our treatment. I don't regret my choices at the time and recognize why they were made. It took me two years, well after I was at SHARE, to begin reading our library books written by so many survivors. Only then was I able to understand and mourn my new loss. Until then, the loss of my husband had been most important to me.
In addition to volunteering for SHARE, what else do you do? What do you (or did you) do for work?
When I returned to the workforce after having been a busy "stay at home mom,” instead of returning to bookkeeping, I decided to work in Brooklyn, in a medical office. There I developed a lot of knowledge by reading medical journals. My mom had developed breast cancer when I was 23. I've been reading and accompanying the development of breast cancer treatments since then. My mom did not have a breast surgeon, and did not go to a good hospital. She died of metastatic disease. With my additional knowledge, my aunts went to breast surgeons and to Sloan Kettering which was known to be excellent for breast surgery at that time. They lived long lives.
My first biopsy occurred in 1976. At that time one went into the hospital for a surgical biopsy, had to sign a document giving permission for a mastectomy do be performed, should the "frozen section" (term no longer used) showed cancer. 1976 was the year when the first "modified" mastectomies began. 1975, marked the end of "radical" mastectomies, when the breast, chest wall and all lymph nodes were excised. Fortunately, I had a benign cyst.
What do you do for fun?
After many years of not wanting to go by myself to movies and theaters, I found a group of ladies who "adopted" me and I've been attending many plays, ballets and events with them. I am grateful for that.
Any other insights that you want to share?
I'm an advocate of healthy eating and living. If one does not take care of oneself during early years, one cannot expect to have a healthy life later on. One must maintain mobility, and one's brain must always be stimulated. We cannot control Alzheimer's, but if we are not affected by it, it would be a shame to lose control of one's mind and body because of boredom, lack of exercise and lack of interests. Being a volunteer is a great healer!
My friend and mentor Lee Miller, one of the SHARE founding members, lived till 87(!). She was of sound mind and began the Side By Side program in her 80's, whereby SHARE ladies would lecture incoming Medical Students at NYU Medical Center and Westchester Medical Center about "Doctor-Patient Communication.” She was active until the last weeks of her life. I hope I can continue being as active as she was.