It’s been two weeks since I posted on social media about the journey of my Myelodysplastic Syndrome (MDS). Facebook friends and people whom I do not see often are beginning to ask what has happened since my last post. They say, “You’ve been silent.”
Two weeks ago, I started another round of a mild dose of chemo by IV. I had Decitabine for three days in a row at MD Anderson Cancer Center. I had no adverse reaction to the drug. My problem is that my bone marrow does not manufacture white blood cells, red blood cells and platelets like a normal person or a person who has controlled MDS.
For the last three weeks, I have received platelets via transfusions three times a week and red blood cells once a week for the last two weeks. We still have a Friday appointment to see if I squeak by with a count high enough to not need any blood. The platelets are another story. A normal low of platelets is 140,000. I have 1,000.
Yesterday we met with my oncologist, Dr. Guillermo Garcia-Manero. He is very concerned that I have not had a platelets boost from the transfusions. He emphasized that at these low platelet numbers, the primary concern is bleeding in the brain or lungs.The hope is that my platelets will rebound now that I’m 14 days past chemo treatment. He doubled my dose of Eltrombopag, which for some people has successfully raised platelet count. He also started me on a 4 week cycle of oral Prednisone steroid starting at 60 mg. This could increase platelets, if my immune system is preventing platelet production.
So I am armed with whatever Dr. Garcia-Manero can put in my body at this time to try to jump-start those platelets. The rest is left to prayer.
Twenty-two years ago I had single by-pass open heart surgery. None of our three children were married yet and two were still in college. I prayed I would recover, which I did, so I could see them all graduate from college, marry and start their families. God granted me that. Now when I pray, I sometimes think I’m being greedy. Now I’m asking to be with my grandchildren for many more years. I have so much more I want to teach them. Is God telling me I already got one extension on life and I’m back asking for more? I feel guilty, but I do want more. Tommy, my kids and our grandchildren need me.
Each of our children and their spouses have been to the hospital to sit with us during the long days at MD Anderson. The grandchildren 12 and over have been allowed onto the treatment floors. They all provide entertainment and love and laughter. It certainly helps the time go by.
Yesterday my oncologist encouraged us to continue to pursue the stem cell transplant possibility. After going through the three hour orientation at MD Anderson two weeks ago, we learned that the insurance I have with Humana will not cover stem cell transplant at MD Anderson. However, it is covered at Methodist Hospital. Dr. Garcia-Manero was very open to me receiving a transplant there. He thinks we should start the process to check for matches in case we decide to go that route. It’s a long, hard process for someone my age, with no guarantees. It’s hard to think about it.
So that’s the latest, my friends. I feel good. My energy is good. I don’t feel sick, but I am. I believe in miracles. I believe in prayer. I believe in you and the power of prayer. Thank you for your love, concern and prayers. Love to you all, Judy