Well, I wrote my transplant doctor a message last night asking for an estimate on when I will be summoned to come up to Mayo. The response from one of his nurses was not an answer to that question. She basically told me to wait and the doctor will let me know. My concern is that the doctor will let me know by saying get my butt up there leaving no time for us to get the dogs to my family for eventually hand off to my mother-in-law. He was the one who put the 6 to 8 week timeframe on it (now 5-7). We just need a bit of advanced notice so we can get things done that need doing. Now we probably won’t hear from him for another week or two. Frustrating.
Time is crawling by, I honestly thought it had been 2 weeks since we were at Mayo, but it has only been 1. The chromosomal study of my bone marrow biopsy is supposed to be done in 2 weeks. So next week. Also they are trying to identify a donor, which takes a while. So probably next week too. Let me tell you, the waiting totally sucks, and with time doing weird things, it just makes the wait longer.
Found out the our dogs need a certificate of wellness to travel to New York. So more money to the vet. But it’ll show that our dogs are in good health. So if anything happens to them in New York, it is a new issue. But we don’t think anything will happen to them other than them being upset about not being with us.
Trying to find out how prescriptions are going to be handled up during the 100 days. That’s almost 4 months that I need meds for. I can’t call down to Iowa and have them call up to Rochester to have them filled. I need prescriptions filled locally up there. I will figure it out.
Teresa has the same problem, but she is not a patient at Mayo, so I think she is out of luck. Whereas I believe Mayo will take care of me. I don’t think they’ll do anything for her during all this. I think first thing she needs to talk to her doctors down here, then find doctors up there for the 100 days. Really screwy, but I think that is how it has to work.
I feel better today, the flu like symptoms are totally gone. Now the only difference between last night and the night before is that last night I did not use my CPAP. Now, my CPAP is clean and disinfected (got it hooked to a SoClean2). So it shouldn’t be causing me to feel sick. Teresa things that the pressure is too high. I just don’t know. It could be all in my head. Just when I started using the CPAP again I felt sick, when I stopped I feel better. Not rocket science. Just stop using it.
Fatigue is becoming a major issue. Which is a sign of blood cancer. I am sleeping a lot of hours again and when I am awake I am sluggish and ready to fall asleep. This is keeping me from driving anywhere. Drowsy driving is like drunk driving according to the new commercials on TV here.
Teresa is a list maker. I am not. I am a throw it together at the last minuter. Teresa has like 4 lists of things to be done before the trip to Mayo. I have what she has gotten for me and some things ready. It’s not like we are going to have zero notice. We are gonna have some time to get ready to go. But I will help her with things on her list as she will help me throw things together at the last minute. We work together that way.
Mood is good. I am hoping that this good mood sticks thru the whole of the 115ish days. Wouldn’t surprise me if it did. I was in a good mood for my whole leukemia treatment back in 2015. Sure I got depressed a couple days, but mostly I was just a happy patient. I was a favorite patient of most of the nurses cuz I never complained about anything and only called the nurse when it was important. And when I did see a nurse I was polite and friendly. No trouble at all.
I have been writing this blog for almost a year. WordPress keeps me informed of how many people read each post, I average around 10. More if I have a cool sounding name of the post. lol. I sometimes get WordPress readers from people from countries I have never heard of. Most of my readers come from Facebook though. It’s all good.