Diagnosis: Acute Myeloid Leukemia (AML). A Journey

I’ve just spent the last 30 minutes looking for dinner recipes on Pinterest that don’t contain lemon, cream, sugar or tomato sauce because all those things trigger the funky taste in George’s mouth. Do you know what it’s like to be a Greek and not be able to cook with lemon or tomatoes?? OY! And, no. Stopping the Ursodiol and cutting back on the Tacrolimus hasn’t helped with his taste issues. But we have noticed one change since adjusting the medications: George starts the day off with dry heaves now. The first time they were so violent, it sounded like he was yelling at the toilet at the top of his lungs.

It scared me! I thought for sure he had vomited. So, he has been starting most days with a Zofran to quell the queasiness/ nausea.

He is still working full time, sometimes using he seat peddler after work to get in some exercise. But most days, he is spent after work and just wants to sit in his recliner. Jackie said that is because he spent what energy he had working all day and doesn’t have any left at 4:00. Ironically, exercising would give him more energy, so we are still trying to figure that out. He does get out and walk on the weekend and will continue that while it’s still temperate outdoors.

One disconcerting thing this past week was opening George’s lab results and seeing that his chimerism numbers had dropped. Well, two out of the three did. Only the CD3 (T-cells) stayed the same. One dropped by 8, so of course George is freaking out and panicking. (I am worried as well, but try not to let him see that and reassure him.) You can see the counts below each cell type, listed by date. If you aren’t sure what chimerism is, please see my last post.

We sent a message to the team and got some measure of reassurance.

“At this time”

So, we are hoping that maybe there was some kind of error or a poor sample for the past chimerism test and will be holding our breath until the results come in for the next one. George will get blood drawn in two days for that test, on Wednesday, Sept 28th. Trying to remain calm…

And continuing to take it one day at a time as best we can. So grateful to have come this far with no major issues and praying it continues that way. We had my daughter’s dog with us for a week when she went to Disney World and he was a bright ray of sunshine…always happy! It was great to have him around!

Oh – one last thing. We have joined a Facebook bone marrow transplant support group. It is sobering – reading about all the shit so many people are dealing with and wondering if it’s just a matter of time before George gets hit with something. Dr. Loren told him that every day he goes without getting Graft vs Host Disease (GvHD) lessens the chance he will ever get it. But, Jackie told him “you’re gonna get it.” Not sure what to make of that. It’s hard to see people post that their loves ones have relapsed…or died. It’s heartbreaking for them and terrifying for George and me. I told him he should leave the group and just concentrate on his own recovery and journey. He hasn’t yet.