After a couple of weeks of constant nose bleeds and mouth ulcers, three doctor visits and a bone marrow biopsy that showed hardly any cells, I was finally diagnosed with Sudden Severe Aplastic Anemia in November 1997 at the age of 45. NIH would not accept me as a patient and it was through the perseverance of Dr. Robert Brodsky, that Johns Hopkins accepted me, knowing that I was a full-time student with a maximum on my insurance policy that wouldn’t begin to cover all my medical expenses.
I was given a choice of the usual treatment, ATG/Cyclosporin or a new protocol, High Dose Cytoxan chemotherapy. I was told that the standard treatment could cause relapse down the line and the formation of pre-leukemic or leukemic cells. However, the new treatment had only been given to 10 people and 4 of those did not survive. After a couple of days of just lying there, dealing with everything that was going on around me, and the knowledge that my only sibling was not a donor match for a bone marrow transplant, I decided to take a risk and go with the chemotherapy treatment.
I received the chemo for 4 days, after which I lost my hair (pretty scary looking at myself in the mirror), and I needed anti-fungal and antibiotic drugs along with an endless barrage of blood transfusions just to keep me going. The chemo’s job was to wipe out my bone marrow and then I received a growth factor to stimulate the marrow to produce healthy blood cells. I was in Johns Hopkins for almost 3 months preceded by a week in a local hospital. I finally had enough white cells to venture out into the world.
Once home, I needed to make daily visits to a hospital (including weekends) for red cell and platelet transfusions, neupogen for my white cells, and blood tests. Little by little, my counts were coming up, and I was transfusion independent within 2 years. But I had developed iron overload (where too much iron in the blood can be absorbed by the organs and damage the liver). So I needed shots to decrease the iron and ironically had to have regular therapeutic phlebotomies (giving blood) to decrease the iron.
PHEW! After all that, the only real issue I face now is that I developed high blood sugar in the hospital after a couple of weeks. I’m not sure if it was the disease, the treatment or the large number of blood transfusions I received, but my blood sugar was always normal before I was hit with this disease.
Other than that, I’m in pretty good health and participated in the 3-mile Hope, Steps and A Cure Walk for AA&MDSIF in Bethesda, MD in July 2010, and had one of the top fundraising teams for the event. I am eternally grateful for all the prayers, visits, mail, calls and support I received that helped me get through this. I had recently been divorced when I was diagnosed, and to me, fighting this disease was easier than everything I went through with my divorce because of the support I received. If there is an annual Hope, Steps & A Cure Walk in this area for AA&MDSIF I plan to be there and keep raising more money every year!
Update: Mary is now a 25-year survivor, still working full-time, enjoying life, and her grandchildren!