I set out to make a bunch of phone calls this morning, but failed to make a single call. I slept instead. Heh. So tomorrow afternoon I will start making all the calls I was supposed to make today. I say afternoon cuz its my birthday tomorrow and I don’t want to get up early. Chris (the PA) won’t be in, he takes Tuesday’s off. But I can make an appointment to see him on Wednesday. And Dr. Wehbe’s scheduler lady will be in by the time I wake up enough to make calls, she will let me change all my scheduled appointments to Thursdays per Dr. Alkhateeb. Adding to that will be a call to Jodie the Chiropractor lady. She’ll crack my back and get it into shape.
Yes, I said tomorrow is my birthday. I will be 49 years old tomorrow. My mother-in-law gave me a nice t-shirt. And Teresa got me something but won’t let me know what it is until tomorrow. Mom and Jimmy will give me Amazon gift cards when we see them, I think. Anyhow, I really didn’t expect anything for my birthday this year except more bad medical news. So the gifts are truly appreciated.
I went to get my permanent crown today only for the dentist to discover that it was “just not right,” and she “wouldn’t put her name on that.” The lab really screwed up this time I guess. So, I will have to go back again hopefully the week of the 19th. If I am not doing stuff for Mayo that week. I really like my new dentist, she is great to deal with. And funny too, so it’s all good at the dentist office. Oh she even gives good shots which is a major thing for Teresa and just a bonus thing for me.
Dr. Eastin, my new psychiatrist was surprised to see me. I guess the person who does the scheduling didn’t relay WHY I needed to see him. To my 2mg clonazepam, 150mg of Nimodipine, and 20mg Abilify, he added .25mg Xannax and increased me to 30mg Abilify. Which works because I went in complaining about Anxiety and depression. These upgrades should work well for me. I like him too, he’s a good guy. Did his Undergrad work at Purdue University graduated with honors. So he is just a midwestern boy all grown up, same as me. He just isn’t dealing with cancer.
oh, sidebar, Trader Joes BBQ Teriaki Chicken was a huge letdown after the wonderfulness of their Mandarin Orange Chicken. The Teriaki chicken was just plain bad.
Today, Dr. Alkhateeb via one of his nurses told me that the chromosome results also were indicative of relapse of MDS. Duh, I had already said as much in my blog yesterday. Waiting for the TP53 mutation for the hat trick. If its not pretty and perfect then I am in real bad shape. What am I saying, I am in real bad shape now. Well, technically it could get worse.
DLI #1 is scheduled for Tuesday the 13th I believe, but we have to be there of Monday the 12th at noon it starts.
So travel is gonna go like this Friday 4 hours up to Mayo, do some stuff, then 8 hours to my mom and brother’s house (getting in sometime around midnightish). Sleeping the sleep of the dead. Have a party. Sleep the sleep of the dead after said party. Get up when we get up and drive 8 hours back to Mayo. check-in to the Gift of Life House then sleep till 11amish. Cuz we don’t have to be there till Noon. Spend most of the afternoon at Mayo getting prepared. Then Tuesday get the DLI and drive 4 hours home if they don’t make us stay. If the make us stay we will have like an 8am appointment with the doc on Wednesday morning and then be released to go home. Lots of miles in few days.
I asked Dr. Alkateeb what we would do if the DLIs don’t work. He said we would do yet another bone marrow biopsy. I personally have little faith the DLIs are gonna do anything, my body is rejecting the original donation now, slowly. So why should I think putting more of the same into the mix is going to make a difference? well Dr. A thinks its a good idea, so I’ll give them a good try. The worst that can happen is they do nothing. (that is not true, the worst that can happen is I have a bad reaction to them, but they do nothing).
My back is still hurting. I can sit ok, but it hurts like hell to get up. Down is ok, up is bad. So as of now, I am mostly planting my butt here in bed for the rest of the night. I took a .25 mg of Xannax an hour ago and now I am super sleepy. Maybe I should cut them in half. (Doc oked that). Anyhow, the Xannax will help me be lazy tonight. but it has also helped that I don’t feel as anxious. So, it did what it was supposed to do.