All of this started November 9th, 2019. He didn't feel good and finally agreed to go to the ER (men...). Within 3 months, he was 17 times to the ER and 11 times hospitalized. He was diagnosed with HUD, sarcoidosis, liver cancer, but each time it was a false positive. He was 4 years on steroids, which made him become diabetic. During the pandemic, it was him and Bubba at home (that's why I can't separate them...), while I was working as a caregiver. When we arrived in Tulsa OK, he stopped all medication and started feeling better, until he was no more. His platelets went down to 13, then to 7, that's when they hospitalized him again and diagnosed him with myelodysplastic syndrome (it took me about a month to get this word in my brain!). Ever since, he has chemo 6 days a month, he still works (he is a salesman) and the rest of the time, he sleeps. When his appointments for work are far, I drive him to make it easier on him.
Our social worker is nice, but it seems that I should know things she is talking about that I don't know. I am retired (I am 66) and Christopher is 10 years younger. He was supposed to be my retirement plan (that's a joke between us) and look at me now...
It breaks my heart to see him so weak and sick, I feel helpless, I spend my days sending emails to find grants, we moved to a cheaper apartment without stairs, and paid rent for a year.
The rule at the hospital is that, if we live more than 100 miles away, we must stay in Oklahoma City 2 months after the transplant. We live 106 miles away... They make life so much more complicated for 6 miles!!!
I don't even know if anything I say makes sense, I just spit it out as it comes...