Wait, What?

June 30, 2023

Yeah, it’s been hard to keep up with communications and the like and this isn’t something I’m really interested in talking about much. Sorry.

For the past few years I’ve had trouble of anemia. I haven’t been able to give blood since the pandemic started, and had some high heart rate issues. At my physical in the fall of 2022, the PA flagged the anemia and sent me off for B complex vitamins (maybe you aren’t absorbing right?), mammogram, colonoscopy, and cardiologist visit. The colonoscopy was done around March 1 and I went right back to recheck the blood test as instructed.

Needless to say, the blood test didn’t look good. My red cells were very low, and my platelets and white cells were too high. She sent me right away to a hematologist, who recommended a bone marrow biopsy – and he could do it that day. I didn’t take him up on the offer, but went back a couple of days later. The results came in mid-April that I had MDS – myeloid dysplastic syndrome – a form of leukemia. In my words, my bone marrow isn’t working right and not producing red blood cells to move oxygen around my body.

The treatment was explained to be three rounds of an “easy” chemo called Videza, followed by a bone marrow transplant.

I started the first round of Videza the end of April, which finished the beginning of May. The second round of Videza started the end of May and was finished the beginning of June. No real side effects from that drug regimen; nothing I would complain about. Mainly just tiredness. Unfortunately, there were some indications that the drug wasn’t as effective as it could be.

Meanwhile, David and I traveled to Baltimore to meet with the bone marrow transplant team at Johns Hopkins in late April. They were incredibly positive about the transplant and my outcome. They weren’t phased at all about me being an only child once they learned about my 18 and 20 year old sons. (Typically a sibling or registry match is used to be the donor.) The Hopkins folks explained that we would get through the initial treatment phase with the Videza, and then their team would take over.

For the transplant, once I’m ready, I will go to Baltimore and have 5 days of strong chemo and 1 day of radiation, all meant to prepare my bone marrow and immune system to be replaced. Once I’m ready, that’s day 0 and I receive what will look like a blood transfusion. The donor material will find its way into my marrow, and after some time, I should accept it, and start a new immune system. Hopkins does bone marrow transplants “outpatient”, so they have arranged for an apartment behind the hospital, and I’ll be expected to get myself out of bed everyday and walk over to the hospital to get a series of tests for that day. We will be there for 60-90 days.

Both John and Andrew are good “half” matches for me (whew!) and they decided that John would be the donor. I’ll have the immune system of a 21 year old! He’ll get a few days of hormone injections to boost his marrow and push some of the good stuff out into his blood stream. Once that’s complete, they will do an apheresis donation (it will look just like a long blood donation), which is relatively non-invasive. That is simply infused into my blood to complete the transplant. John’s blood type is O+, so I’ll emerge with O+ blood (I currently have O-).