My twins were born on the first day of Hanukkah 2003. On the first day of Hanukkah three years before, I was diagnosed with stage IV Hodgkin's disease.
A Three-Inch File -- But No Diagnosis
For a long time, I was misdiagnosed. I hadn't been feeling well since January 2000. My skin had become very sensitive -- itchy, sensitive to light. I went from one dermatologist to another. They all told me it was nothing. Maybe dermatitis. I should use more moisturizer.
Then I became so tired, I couldn't get out of bed. I was exhausted all the time. So I went to see another set of physicians. They told me I was stressed out because I was getting married that summer. I should take it easy, watch my stress level. I was working very long hours as a portfolio manager on Wall Street. Then my future father-in-law died of lung cancer. It was a very difficult time for the family.
I had been exceptionally sick over my honeymoon. My skin was still very sensitive. By that time, I had seen a host of allergists, trying figure out what was wrong. I had had a lump on my neck, but I thought maybe it was my lymph nodes swelling because I was allergic to something.
In December, I got very sick. It was winter, so I thought it might be the flu. But I began to think it might be something more serious because I was just not getting better. I had a three-inch file with information, but no diagnosis.
I collapsed at home on Christmas Eve 2000. My husband immediately rushed me to the emergency room. They did a chest x-ray and a CAT scan. They came back and said my scan was abnormal. They didn't want to commit, but they said it could be a type of lymphoma.
Right away we did a biopsy. It came out positive for Hodgkin's disease. They couldn't tell me what stage it was, but I knew deep down it must be very late because I had been sick for so long.
Fate Brings Me to Memorial
My late father-in-law had a good friend whose two daughters were oncologists. They suggested I see Andrew Zelenetz at Memorial Sloan-Kettering. He was able to see me within two weeks of my biopsy.
Dr. Zelenetz spent a good two hours with me, telling me about my diagnosis and my chances of going into remission. I remember walking out of his office thinking, "I really have a serious disease." It was overwhelming. When you finally see an oncologist, and you hear the words "chemotherapy," "radiation," "the cancer has spread," "survival rate," it hits you.
He told me I had stage IV Hodgkin's disease. He recommended a new treatment protocol called Stanford V that was given at very few hospitals and Memorial was one of them. It was shorter and more "dose-dense" than the standard therapy. It was felt to have a higher success rate for late-stage Hodgkin's disease, and it was designed to reduce the chances of secondary malignancies later in life. Most importantly for me, it had a very high success rate in preserving fertility.
First of all, I was anxious to survive. If I survived, I wanted to be able to have children. I was in my early thirties.
The protocol required more medical staff than the standard treatment, and was more difficult to administer because it was every week. My patient care at Memorial was outstanding. I had twelve weeks of chemotherapy, all on an outpatient basis. I had one month to rest, then two months of radiation therapy, because my lymphoma was so advanced.
I Cried So Hard That Day
The day that I went in to get the results from my first chest x-ray after my first cycle of treatment was one of the most frightening days in my life. Dr. Zelenetz was on vacation that week, but another member of the lymphoma team, Dr. Craig Moskowitz, came in and told me that my x-ray looked clear. I am not an emotional person, but I cried so hard that day. I was overwhelmed with joy. I will never forget that moment.
My fear was greatest during the first two years after treatment. Then I got pregnant, and didn't have any tests for almost a year. (You're not allowed to have tests involving radiation during pregnancy.) My scariest follow-up was my post-pregnancy CAT scan. When that one came back clear, I think that was when I turned the corner emotionally.
I intentionally chose New York Hospital for my delivery, because it's across the street from Memorial. From the room where I had my babies, I could look right into my room at Memorial where I spent a few days as an inpatient during radiation therapy. It was very powerful to think of myself as a healthy person having babies, and to look across the street at Memorial and say, "That place saved my life. They're the reason I can be here."
Turning the Corner
I turned the corner almost three years after my chemotherapy, when my CAT scan came out clean after my pregnancy. It was a sign that my body was okay, because carrying twins is difficult under any circumstances. I regained faith in my body.
But also during my checkup post-pregnancy, Dr. Zelenetz's demeanor was different. I think during the first two years an oncologist always wants to be careful, not give unrealistic hope. But I could sense something different that day that said, "You're going to be okay."
I went back to work. I'd always been successful as a portfolio manager. I had stopped working for a couple of years, and I went back. That gave me an incredible amount of confidence and it helped me think less about my illness and gave me something to work toward. I felt like I had a future when I went to work. I also got very involved in cancer-related causes, at The Leukemia & Lymphoma Society and at Memorial Sloan-Kettering.
