The news continues to be positive from my doctors. My blood counts are steady. We will not need to go to Mt. Sinai each week for a blood test. We will only have that done once a month when we see Dr. Keyzner, our transplant surgeon. As she said, we are no longer in the survival mode, we are in the keep healthy mode.
Last year when the High Holidays approached I envisioned what it would be like as an inpatient at Mt. Sinai. I brought my Machzor to the hospital and thought of how I would sit, pray and meditate during that holy time. I was of course totally mistaken. I had not thought of the hustle and bustle of the daily routine with doctors, nurses and other medical professionals coming in and out of my room all day long. Nor did I figure that I would not be able to concentrate very well. Now I look forward to spending the holidays at the Fair Lawn Jewish Center/Congregation B’nai Israel with my community. For the first time in over 40 years, I will be able to sit with Rhonda as a member of the congregation.
I am also looking forward to a Shabbat service in October. Last year I marked my seventieth birthday while still a patient at Mt. Sinai. Rhonda, somehow, was able to come up with a cake I was permitted eat. This year my birthday will be our Sisterhood’s annual Pink Shabbat. That is when Breast Cancer Awareness month is recognized and synagogue members who are survivors of breast or ovarian cancer participate in the service. For me it will be so gratifying to be in the presence of those other cancer survivors.
Last week I watched on my computer a daylong meeting held in Hyattsville, Maryland, hosted by the MPN Foundation, the main organization that sponsors research and educational work for those diagnosed with my type of blood cancer and two other related ones. The purpose was to give an opportunity for patients with those three illnesses to “…stand in front of decision-makers including FDA regulators, academic researchers, and biopharma representatives to convey the challenges that ET, PV, and MF [the three diseases collectively known as MPNs: myeloproliferative neoplasms] patients face every day.” As of now, there are no drugs that cure them; just a few expensive drugs can alleviate symptoms for some patients.
I had several major takeaways. First I hope that the FDA would promote research to find drugs that will be able to stop the progression of MPNs and eventually reverse that progression. In my case, I had ET for 25 years before it became MF. PV can also progress to MF. I would like to imagine a future when a bone marrow transplant would be the iron lung of the MPN world. Let me explain. At one time doctors had to place patients, often those with polio, who could no longer breathe on their own into a large metal tube with a mechanism inside that would allow their lungs to function. It was a clunky and difficult way to treat a disease. It is now obsolete because of new and better treatments. If only bone marrow transplants could become so outmoded! What struck me as well were the stories that the patients told of their experiences. So many of them with ET, PV or MF have that can be debilitating. Many could no longer work and faced days with fatigue and pain. Some could alleviate their symptoms with drugs that are currently available. Some were on clinical trials. I thanked God that I was lucky enough to be symptom-free for over 25 years. I was also fortunate that I was one of the five per cent of MF patients who are healthy enough to be eligible for a bone marrow transplant. As I used to say, aside from the cancer I am a pretty healthy guy! I recall the many times Dr. Hoffman recited a long list of symptoms, asking me if I had night sweats, itching, fatigue, bone pain and other ills. I simply said no to each of them. I thought of that as I listened in awe to the patients who had to suffer those symptoms. What strength and courage they showed living with such disruptions in their lives and with so much discomfort.
One of the tests I have had several times this past year is called the chimerism test. A chimera is a figure from Greek mythology made up of the parts of different animals. For bone marrow transplant patients, that test determines the degree that the recipient’s bone marrow and blood is still his or her own and how much is from the donor, making him or her into a chimera. That result is expressed as a percentage. The test results at the end of my hospital stay and the most recent one both indicate that my bone marrow and blood is 100% Gabe’s, making me a chimera. I thought of that when I recently read an article written by Laura Landro, a reporter for the Wall Street Journal. She is a survivor of leukemia who was saved with a transplant of her brother’s bone marrow. She points out that she is a chimera, and that mythic creature not only was a mixture of different animals but was also a fire-breathing monster. Thinking about the possibility of her cancer reappearing she writes, “I kind of like that fire-breathing image as a symbol for being prepared to battle any cancer that returns or emerges. I don’t dwell on that possibility, but I know I can deal with it if it comes to pass. And I am fiercely grateful for the designation that all cancer patients want: long term survivor.” I, too, think of being a long term survivor, but for now I look forward to be written in this year’s Sefer Hahayim, the Book of Life.
Rhonda and I wish all of you a truly sweet and good New Year.