5/17/19 Update

Today is the 100th day following my bone marrow transplant. I finished my second round of maintenance chemotherapy on May 3 and the next round (#3 of 12) is scheduled for the week of June 3, 2019.  Following my second round, due to my compromised immune system I picked up a Human Parainfluenza Virus which is spreading like wildfire through the hospital transplant units. I was treated with a 4-hour infusion of intravenous immunoglobulin to provide antibodies I can’t yet make on my own to fight off the infection. Seems to be working well. This past week I had a “Survivorship” meeting, a meeting with my Transplant doctor, a pulmonary function test and physical rehabilitation testing. My pulmonary function test and rehabilitation test scores exceeded my baseline pre-transplant, indicating I am progressing well. At my survivorship meeting I learned that most patients take a full year to completely rebound to a “new normal” and that I will just have to continue to fight off the fatigue issues. I should be able to start some limited travel by the middle to end of June, but will have to take appropriate precautions to avoid infections. As discussed before, I will have to get all new immunizations, but that process won’t start for another few months and will take several years to complete (just like a new born child!).

Given my ongoing tiredness symptoms, I went to see a counselor to determine how much of my condition might be emotional as opposed to physical. I was bluntly told that anyone in my situation who was not depressed would have to be dead. Part of it is related to medication – the tacrolimus I take to ward off graft-versus-host disease, suppresses the immune system of my donor’s blood cells leaving me with a compromised immune system and low testosterone levels. I have to remain on this drug for at least 6 months following transplant. We mutually decided that I would be best served to start taking an anti-depressant to equip me with all the tools I might need to thrive (what’s one more pill), so I also started taking Prozac this week.

All of the medical staff have told me I look great and am meeting or exceeding all possible recovery expectations, with no signs of rejection to date. It’s a very long road, but I am very fortunate to have supportive family, friends and work associates that understand and support my recovery process. I thank God every day for my loving wife and sons. My recovery specialist reminded me that the speed of medical advancements in treating AML far exceeds the risks that I face and that I should be thankful and stay positive every waking moment. She reminded me that as little as 10 years ago, bone marrow transplant patients had to remain in an isolation ward for the first 100 days following transplant.

Keeping the faith and wishing blessings on all,

Yours in Christ,

John L.