I wanted to share my struggles in navigating and enduring multiple serious health issues. I hope my story will be an inspiration for cancer patients and especially for those patients who may be on a similar journey. In the end I have been able to overcome many demons and achieve a sense of contentment and love of self.
I was raised in the Orthodox Jewish tradition. We didn’t attend synagogue regularly, but we were observant and followed much of the tradition. My grandmother was quite observant. It was my grandmother who truly nurtured me and my siblings. It was unfortunate that she became senile and unable to care for us when I was only 13 years old. After five years of living with her in a senile state, she passed away when I was 18 years old. It was at that point that I began to question, if there is a G-d, why would G-d allow my grandmother to suffer for so long?
My mother passed away when I was in my 30s from a long bout of mesothelioma. Growing up, she made me feel as though I wouldn’t amount to anything important and college was not necessary for me. Following my mother's death, I discovered an awful emptiness in myself. The first thing I wanted to do after she died was prove to myself that I could get into college and become something. I looked into various schools and decided upon Fordham University at Lincoln Center.
During my second year at school my father was diagnosed with lung cancer that had metastasized to the bones. His illness and dying were a totally different experience than my mother’s illness and death, and it has given me a totally different perspective on my own illness and eventual death. He was more accepting of his illness and death. He showed me a strength and courage that I have been able to emulate as I face my own diagnosis and death.
I continued on at Fordham after my father’s death. By attending classes at night and over the summer, I completed my BA in just six years. I graduated with a 3.4 GPA and received two extra-curricular awards at graduation. Through my class work and papers, I discovered and became conscious of the many ways my mother had held me back from achieving various goals and becoming my own person. After attending NYU's School of Social Work, I spent almost 30 years working in healthcare as a discharge planner. I developed a program to help Medicaid patients find home services following acute care. I also helped patients apply for Medicaid as well. I felt fulfilled in my work. I lived my life happily, independently, and I was able to help others.
My first personal experience with cancer was in 1999. I remember sitting in the surgeon's office as she told me I had cancer. I started crying saying that my worst nightmare had become a reality. I was diagnosed with Ductal carcinoma in situ (DCIS), which was treated at the time by a lumpectomy, six weeks of radiation and a 5-year regimen of tamoxifen. As I went into my fifth year of finishing tamoxifen, I wasn’t feeling well. It was 2004 and my gynecologist, who I saw every six months for a pelvic sonogram, recommended having an additional sonogram to check a fibroid I had had forever. The sonogram showed that the fibroid and my uterus had tripled in size in the last six months. After the gynecologist checked with the radiologist, she informed me that I should have a total hysterectomy. After the surgery, my surgeon personally woke me up in the recovery room to assure me that he was 98% sure I was going to be fine. He didn’t see any sign of a sarcoma, and everything turned out well with the hysterectomy.
During my pre-op tests, they had found something concerning so a few days following my surgery, I met a hematologist who performed a bone marrow biopsy. I saw the hematologist for a follow up two weeks after I got home from the hospital. She informed me that I had myelofibrosis, and I needed to have a bone marrow transplant. She wanted to refer me to Mount Sinai Hospital. At the time, my sister worked at Yale School of Medicine and knew Dr. Thomas Duffy, a hematologist. One rainy afternoon, she stopped him outside the hospital and explained my situation. He informed her that he very much wanted to see me once I had recuperated. In the interim, he wanted me to forward him a copy of my complete medical chart and the actual pathology report from the surgery. I saw him six weeks later and had a three-hour exam with his fellow and him including multiple tests and extensive labs. At the end of the exam, he said that he believed I didn’t need the bone marrow transplant, but in fact that I had a rare hematologic disorder. He said that he would know better when the test results came back. I returned to see him two weeks later for the results. He assured me that I didn’t need the transplant and in fact had systemic mastocytosis, a very rare hematologic disorder known as Mast cell. It turned out he was the only hematologist in the entire metro area that diagnosed and treated Mast cell.
At the time of my diagnosis of Mast cell, I learned that I was also allergic to anesthesia. Therefore, I required certain medications whenever I was given anesthesia so I wouldn’t go into anaphylactic shock. Two years after the hysterectomy, in 2006, at an annual wellness check up with my primary care doctor, it was recommended that I have a bone density and neck sonogram for a thyroid nodule that I had for years. After a great deal of confusion following these tests, a neck biopsy for a nodule on my thyroid revealed that I had thyroid cancer. Since my family was in Connecticut and Dr. Duffy was at Yale, I decided to have my thyroid removed at Yale. I was then referred to Dr. Elizabeth Holt, an endocrinologist at Yale. She recommended that I have a radioactive iodine treatment for the remaining cancer cells to see if those cells would respond to the radioactive iodine.
In 2007 after having a follow up neck ultra-sound, a new nodule was found. It was biopsied and also turned out to be malignant. Dr. Holt recommended surgery to remove it. During pre-op testing, it was discovered that I had spots on my lungs and it was decided that I have a lung biopsy. I didn’t know what I feared most whether it was related to the breast cancer, or the thyroid cancer, or whether it was a new lung cancer. I was somewhat relieved when I was told that it was not a new lung cancer, but instead the thyroid cancer had spread to the lungs. Dr. Holt then recommended that I have another radioactive iodine treatment. With all the radioactive iodine treatment I had, the malignant nodule in my neck had totally disappeared, while the spots in my lungs were slowly growing. Dr. Holt and
Dr. Hari Deshpande, my oncologist at Yale, continued to monitor me.
Then in the summer of 2012, my sister noticed a suspicious spot on my right shoulder which turned out to be melanoma. After having a biopsy, it was determined that surgery was necessary. The pathology showed it was self-contained and I didn’t need any treatment until 2019 when my struggle with cancer continued.
Meanwhile my white blood count steadily climbed for about a year. Dr. Duffy retired and my new hematologist at Yale,
Dr. Terri Parker, thought that the Mast cell may have finally led to myelofibrosis, the diagnosis they originally thought I had. Dr. Parker recommended that I have a bone marrow biopsy, which confirmed her suspicions. Dr. Parker then explained to me that she wanted to transfer me to
Dr. Nikolai Podoltsev who specialized in diagnosing and treating myelofibrosis. I felt confident with all the doctors at Yale since my medical issues are so complicated. During the COVID lockdown, I decided to move from New York to Connecticut and be treated by Dr. Podoltsev and my other physicians.
My labs were stable until April 2021 when my platelet count started to go down. Dr. Podoltsev advised me that it was probably time to treat the myelofibrosis. He offered a cancer drug that did not treat the disease itself, but it would treat the symptoms. In the fall, Dr. Podoltsev informed me that there was a new drug which had proved to be more effective in treating myelofibrosis in the trials. He was hoping the drug would be approved by the FDA toward the end of February. The approval happened and in mid-March I started the new drug. After a few adjustments in dosage, it has been effective in managing the myelofibrosis and my counts have remained relatively stable.
This long cancer journey has among other things led to a poor body image. When I had my hysterectomy I was cut from the belly down. When I had the lumpectomy surgery, I was cut on the top of breast and on the bottom of the breast. As a result of the lumpectomy that breast was half the size of the other breast. When I had my lung cancer surgery, I was cut in three or four places in my back. When my platelet count goes down, I get bad bruises all over my arms, belly, and back. My body did not feel the same nor did it look the same. Therapy helped me understand that all these changes became a part of who I am and I came to a place of acceptance rather than hiding. So many of us who have cancer go through this. It takes time to accept our new body, but it is not impossible.
During one of my treatments, Dr. Podoltsev came out and asked me, “Do you know why you have experienced multiple cancers?” I said, “no.” He proceeded to explain that he found that I had a chromosomal mishap in vitro. It was no one’s fault. It was not my mother’s fault. It just happened. This chromosomal mishap effected my immune system and most likely living and working in Manhattan on 9/11 exacerbated the immune system. I had had a great deal of genetic testing for each of my cancers and they found that I have two mutations for the thyroid cancer and the mutation for the myelofibrosis.
When I was diagnosed with myelofibrosis, I began searching for a more meaningful way to live my life. I began searching myself wanting to find peace within myself and be at peace when I die. I made a promise to myself that when I die, I would be content with my life. I wanted to give myself the gift of growing psychologically and spiritually. I wanted to reframe what my life had been. So, following my diagnosis of myelofibrosis, I began to work with the Yale Palliative Care social worker, Ed Schwartz. He really has been my savior. At about the same time I began exploring my spirituality and I began questioning my religion. I attended a book reading for the first publication of Spirituality through our Struggle. As I listened to the authors read their stories describing multiple cancers and decades of treatment and how they relied on their faith, I was so moved. I wanted to figure out what I believe to be true about G-d and life, so I reached out to the Palliative Care Chaplain to help me process my faith and what I believe. I am still sorting out what I believe, but I finally feel free to go searching for G-d on my own. I have learned that I do not believe in the punishing G-d my mother described. Shedding the self-blame and seeing all the positive in my life, I can now say that I am fully content, and finally feel at peace.
