208 days post-transplant! I will start my sixth monthly round of maintenance chemotherapy today – 5 consecutive daily subcutaneous injections of Guadecitabine. Six monthly treatments remaining. Traveled to Anniston again this past week and still working full time. Still tutoring my grandson in Algebra and started back at the YMCA in early August with a personal trainer to rebuild my core strength. Also signed up to volunteer at M.D. Anderson (phone counseling) to give back for all I have received.
On another positive note, Lorraine and I made a short 3-day trip to San Antonio in August and had the wonderful opportunity visit with my High School history teacher, Mr. Donald Jennings. We had a great visit and talked for over 2 hours about life, literature and politics.
One last note – I wrote a “grieving essay” to clear my head of negative thoughts about having cancer and its related effects. I have chosen to share it on this blog, but realize there are some very personal thoughts and words that I was sensitive to posting. I only post this as a thank you to all my family on friends for their continued support. Here it is….
I Hate Cancer!
I hate cancer! It is the enemy that came and tried to sit at my table. When I was first diagnosed with Myelodysplatic Syndrome (MDS) and then advised that it had advanced in less than a month to Acute Myeloid Leukemia (AML), I thought my world must be ending. Never before having to experience any serious injuries or illnesses and believing I took fairly good care of myself, I could not not understand how this could happen. I had been feeling more tired than usual and attributed it to the process of aging – just drink some more coffee and Red Bull. At Lorraine’s insistence, I went to our general practitioner who ran my blood work In September 2018, said I was mildly anemic and asked me to come back in another month. Upon my return, my anemia had worsened, and she sent me to see a hematologist. The hematologist ran my blood work and confirmed my anemic condition and said he wanted to run a bone marrow biopsy – something I was then completely unfamiliar with. He said not to worry, that I in very good health overall and that he would be surprised if the results were not benign. A week later he called to tell me of my MDS diagnosis and referred me to a doctor at M.D. Anderson (MDA) cancer center.
When I went to MDA they confirmed my MDS diagnosis with another bone marrow biopsy and enrolled me in a clinical trial program. Prior to commencement of that program, they performed another baseline bone marrow biopsy and advised me that my blast count had increased from 10% to 25% and that I was now an AML patient. I was transferred from the clinical trial to the hospital to begin immediate chemotherapy for 30 days. This was followed by a second 30-day chemotherapy regiment in isolation at the hospital to prepare me for a bone marrow transplant. Both of these chemotherapy sessions brought me to my knees. Without Lorraine and a supporting family and friends I would have never survived.
I was very fortunate to have three unrelated stem cell donors that were positive matches. My only surviving sibling was only a half-match. The selected donor, who I cannot meet for one year, was a 27 year old male. After two rounds of chemotherapy, a bone marrow biopsy confirmed they had successfully killed all of my stem cells and that I was ready for a transplant. On February 6, 2019 I received by Donor’s stem cells via blood transfusion in the presence of Lorraine, a Chaplain and wonderful staff of MDA. Scriptures were read and we prayed the Lord’s Prayer. When it was completed, they sang Happy Birthday – I would now have a new blood type and DNA.
After discharge from the hospital,I was advised that I was a high-risk patient due to my age and original blast count and was enrolled in a 12-month chemotherapy maintenance program to prevent recurrence. I have recently completed my fifth monthly round of maintenance chemotherapy and received my first round of new vaccinations. A follow up bone marrow biopsy has confirmed I am still in remission and have fully engrafted with my Donor’s cells. I am at home, still working full time as much as I am able and trying to adjust to my new world.
I hate what this process has done to me – I remain weak with low stamina and have to be very cautious where I go due to my compromised immune system and other medications I have to take. I have been told that it will be one year after transplant before I will be at my “new normal.” My appetite has decreased, I am fairly isolated and I abhor what AML has done to me and my family. I have never in my life had to be so dependent on other people as I am now. While I am able to drive now, when I first attempted to drive after being discharged from the hospital I hit a steel bollard while attempting to get gas for my truck. Isolation has led to some depression, and I have seen a counselor to help me sort everything out.
Despite all of my hatred for cancer, I am determined to keep moving forward and remain thankful and faithful for what I have and where I am. What cancer has not been able to do is diminish my faith, my love of family and my thankfulness for being a “survivor.” I am eternally indebted to Lorraine and my family for their love and support and have started to search for my new normal. I am walking regularly, recently enrolled with a personal trailer at the YMCA, started playing trumpet again and have reached out to MDA to offer my volunteer services. I refuse to give in to the evil and dysfunctionality of cancer and know that God is on my side and will never give me more than I can handle.
Cancer Journey 