October 28th, 2021: I am cancer free for over a year now. I guess you would think all is well and I am back to normal. Nope. Normal takes on a different definition now in my life, but not a bad one. I am so grateful to be alive and to have met the people I have along this crazy journey. I have GVHD of the liver as a result of my life saving Bone Marrow Transplant. I had my BMT just over a year ago, October 27th, 2020. To get cleared for my transplant I had to be in remission and cancer free, so I went through 3 rounds of 21 day cycles of chemotherapy. After those rounds of chemo I had radiation, a couple more days of high intensity chemo, and then was in remission and ready to get my Bone Marrow Transplant.
The cancer right now is not the issue (thank god) but the Graft Versus Host Disease which I developed as a result of my transplant has become the issue. Graft Versus Host Disease is a common complication after a Bone Marrow transplant that occurs when the stem cells that were given to the patient, begin to attack the main organs of the patient. This is because this new body is foreign to this Graft and it decides to attack its host, which is known as Graft Versus Host disease (GVHD). In my case this graft initially had attacked my GI tract and my skin, early on after my transplant, sometime in December of 2020. Thankfully, that was resolved rather quickly. Unfortunately, a few months later I developed Liver GVHD, in a more chronic state which has been harder to resolve. Due to medications being processed in the liver, the best option for me is not a pill, it is something else called ECP, otherwise known as ExtraCorporeal Photopheresis. This is a treatment where I lay down in a bed, I get hooked up to a machine and this machine takes my blood, filters out the white blood cells, weakens them under a light and returns them to me in their weakened form. These white blood cells are known to be the cells that are causing this GVHD, and by calming them down, over time, the goal is that they will stop attacking my liver. It is now October 27, 2021, and I have been doing this ECP treatment for 12 weeks now. My liver has begun to improve but it is a very long process and it seems like I might be doing this treatment for the next year or so. I am not really sure, but from what I hear and understand from nurses and doctors, this treatment usually lasts for years. I don’t know my future and I don’t know if soon it will be lowered to once a week or it will stay twice a week, it all depends on my counts and how my liver is doing. I still have a long road ahead of me, but it seems the treatments have been working and I am slowly headed in the right direction. I do this ECP treatment twice a week at Sylvester Cancer institute and I also go to Nicklaus Children’s Hospital 2 days a week for magnesium infusions and for blood work/tests. So I’m going to the hospital an average of 4 days a week. It’s pretty exhausting but I am feeling better overall and always have great experiences at both hospitals. I know so many people who dread going to the hospital, but because of the kind nurses and doctors I have, I don’t feel bad about spending so much of my time there. I feel loved and appreciated every day and that is truly special.
Michael and Mom Talk Cancer 