I think I finished everything Teresa asked me to do today. It’s getting down to crunch time. We leave for my family’s home on Wednesday. Have to be at Mayo in a week to start the transplant process. Transplant is in 17 days. Teresa and I actually did bust our butts getting things ready this weekend. 90% packed, not in the car, but in suitcases and boxes waiting to get jammed in the car. It’s gonna be a tight fit until we get to my family’s house. Then we should have some room. Pucky and Mojo will probably spend 6 hours on my lap, lets hope for no accidents. But it’s all good, we’ll make it to the Region late Wednesday night. We’ll leave the Region on Sunday when we get up and moving. It’s a 6 hour drive to Rochester from the Region, so it’s not a big drive/rush. We should get to the Gift of Life Transplant House around 7 or 8pm. Then on Monday I have appointments, a lot of appointments. And with these appointments it begins. How do you like that totally unstructured paragraph, goes from what I have to do today to what’s happening a week from now and everything in between? My English teachers are all failing me right now.
Tomorrow I am going to have yet another CBC at Dr. Wehbe’s office. Yup, another blood test. This one to see if I am even close to needing a platelet infusion. If I am close, we will be defaulting towards giving me the infusion. Dr. Wehbe and I came to an agreement that it would be better to give me one early as opposed to me having to go to the ER in the Region and get an infusion there or getting an emergency infusion at Mayo on Sunday or Monday. Better to be proactive then reactive in this case. Cuz a screw up can literally kill me.
Speaking of killing me. I still feel really good for a person who is technically dying. You’d think this close to death, I’d feel sick or something, but actually with the exception of anxiety, I feel damn good. I think I have said it before here, but I’ll say it again. It’s going to suck that they are going to pump poison (chemo) into me and take me, who is feeling wonderful and make me feel like total crap. I so wish there was a way to do this without making me feel so rotten, but alas, I have to have chemo in order to accept the donation.
I’m afraid that Hectic.blog is gonna take a big hit if/when I get really sick. I know Teresa is updating my Facebook and then CaringBridge. The CaringBridge site is really well done, even if some of Teresa’s dates are wrong in her posts. But I have been asked by several people to have Teresa do the Facebook updates she did last time, I relayed that request to Teresa and I believe she is going to keep my Facebook up to date if I can’t. https://tinyurl.com/ybmvsd9h This is tinyurl of the CaringBridge site if you are interested in seeing that. https://www.facebook.com/HecticMind is my Facebook.
Me getting sick from the chemo is pretty much a given. Especially if there is more chemo after the transplant. Last time I spent more time sick than feeling good. Leukemia 2015, is either missing in my head or a giant blur of things that happened. Hoping the MDS 2018 is a little less traumatic, but Teresa promises to take more pictures for me. I have the strange feeling that MDS 2018 is gonna be worse though.
I’m gonna lose weight again. I hope to be able to keep off some of it. Would be nice to not only get a new set of bone marrow but to permanently be 20 pounds lighter. We have pretty much given up fast food. Teresa has been cooking every night. Which she will continue while I am down and can’t at the Transplant House. Teresa is an excellent cook and I am looking forward to her cooking.
Still don’t know what most of the appointments on the 7th are for. Mayo updated their computer system and programs, and things aren’t working quite right or so it appears they aren’t working quite right. Most of them say they are with “Your Healthcare Provider” which is cool, but technically I have a whole team of them, so which one? I assume 1 of them is Dr Alkhateeb. Beyond that I have like 6 I do not know who they would be with specifically. But I will be there and all will be well. I know I meet with the pharmacist first thing in the morning, then the research people which I agreed to help out. Then nothing for a few hours, then a bunch of appointments that afternoon. It’s the ones in the afternoon with no information. Weird.
It’s something like 82 degrees outside today. Yup, Spring in Iowa, gotta love it. It’s supposed to storm the next 3 days. Yup, Spring in Iowa, gotta love it. I’m gonna miss it. But hopefully Rochester doesn’t get so ridiculously hot and humid as it does here this summer. It would be nice to be able to go out and sit on the deck and enjoy the summer (I am not supposed to get a lot of sun), instead of hiding inside with the A/C blasting all the time.
I wish the Transplant House was able to give out room assignments earlier than the day before you are to arrive. As it stands now, we are gonna have to get someone to grab our mail for a week or so and pack it up and ship it to us. Then our temporary change of address which we will send in should take effect. But since it’s the first week of the month and most bills are mailed to us the first of the month, that mail in the interim is important for the most part.
I broke 1000 words again when I didn’t think I had anything to say. Heh.