My journey with Myelodysplasia began on June 1, 2000, when my hematologist, Dr. Yogesh Gandhi, performed a bone marrow biopsy and aspiration. A week later, he told me I had Myelodysplastic Syndrome Refractory Anemia, in simple terms, my bone marrow did not produce enough healthy red blood cells to sustain life. The result would be blood transfusion dependency. I asked him if I should cry, and he told me no. In the past three years, I have cried about six times about my condition. I became determined to fight it and be a survivor. With a positive outlook, I felt that I had won at least fifty percent of the battle. I began with my first transfusion on June 1, 2000, and gradually the time between transfusions changed from 13 weeks apart to 3 weeks apart.
After the diagnosis, I went home and "put my house in order", making plans for the future. Then I put the paperwork aside and concentrated on the future because the doctor would not give me a prognosis. From my reading, I found life expectancy was two to five years. I said to (blank) with that, I had too much to accomplish, and it would be much longer.
During that time, I had the full support of family and friends. My older sister, Charlotte, taught me to make polymer clay jewelry and that was my main hobby. I gave some it away, and I threw some away. On good days, I went shopping. I definitely did not do grocery shopping, I saved my energy for the good shopping - department stores. I continued to cook meals, do my laundry and some small stuff. Ross did all the major housework.
In May 2001, I had a portacath placed in my upper right chest to make blood transfusions easier. During this period, we tried Thalidomide, but I got a reaction and had to stop. We tried the drug Amifostine, but that did not slow the progression. I had Procrit shots to increase cell production, but that did not work. I just knew something would come along.
Dr. Gandhi and his staff and the nurses on second floor east of John Randolph Medical Center became my new family. Without their support, my battle would have been a little more difficult. My family visited often as it was too tiring for me to travel. During this time, I felt my sisters were becoming much closer to me. They visited twice yearly for sisters' week. We made jewelry and played Scrabble. If I were at the top of the blood cycle, we went out to lunch and did a little shopping at Peeble's Department Store. I felt this whole experience made me a stronger person and I had to keep on believing an answer could be found.
In May of 2002, while surfing the net, I came across the notes from the April 2002, Oncology Conference in Orlando, Florida. It was interesting that much of the conference dealt with the mini-peripheral stem cell transplant. Upon further reading, I found that it might be a possible cure for my condition, Myelodysplasia. I took the information to Dr. Gandhi, and he checked with MCV Hospital in Richmond, Virginia. MCV was one of the centers for the study, a phase II clinical trial. Dr. John McCarty, of the Bone Marrow Transplant Clinic, and his colleagues had the finished protocol for the trial on May 28, 2002. I had my first appointment on June 11, 2002. There were 18 centers in the US taking part in the trial with a total of 100 participants in the original pool with a range of cancers and blood diseases.
The next step was insurance coverage and hoping that I had a sibling match. Finally, we got insurance approval for the whole process. My younger sister and her husband visited in July and her blood was tested. She did not match the first four indicators. There was only a 35% chance that a sibling would be a perfect match. Next, a sample kit was mailed to my older sister, Charlotte, and the first four indicators were a perfect match. It now became an 85 percent chance that the next two indicators would match. The good news came; she was a perfect match.
In September, I started on a chemotherapy drug, 5-Azacitidine, three shots (painful) a day for seven days with three weeks off and then a repeat of the cycle until I had completed four cycles. Wow!!! 84 shots!!! We had a one-week delay in November. When my white cell counts dropped to the neutropenic stage, I got pneumonia and had to spend 5 days in the hospital. I was the first in the nation with MDS to complete the Phase II trial with a pre-treatment of 5-Azacitidine.
Christmas 2002 was great for me although I was neutropenic (low white blood counts). I had my family with me for the holidays. There were nine of us. The grandsons were so cute when holding out their hands for the antiseptic hand cleaner so they could climb up on my lap for hugs and love. It was a wonderful time. Throughout my illness, my children have come to visit frequently. My husband, Ross, has been here for me with his love and support.