We started the day at 7AM, early start. In fact, we were so early arriving at Moffitt that they hadn’t even unlocked the BMT office! We ended up waiting outside with another pair who actually turned out to be our next door neighbors at the apartments. Mom said she had seen them before, and we ended up chatting for a bit. The man’s caretaker seemed to really enjoy having someone to talk to; he even came back to us later that morning while we were waiting in the BMT office just to talk some more (we believe). He was really nice and we all told each other to come by if anything was ever needed at the apartments. We also saw another couple, who were on the BMT floor at the same time as I was. We hadn’t seen them in a couple of weeks, so we updated each other. He’s an interesting one because we often saw and heard him arguing with the staff – it’s that old “you catch more flies with honey versus vinegar.” Mom and I try to stick with the honey.
We had labs today and then our doctor visit. Things went pretty much as usual. I was good with the PA visit. It seemed like we waited quite a while for Dr. F, but when she came in, it was rather uneventful. My blood work is decent. My platelets are up to 88. My hemoglobin is 11, and my white blood cell count in 5.04. My liver is good and my kidneys are great. The only thing that’s a little low is my magnesium at 1.4 which is below the 1.5 minimum that I had last week so she increased my pills – yuck – and now I have to take four, four times a day (that 16!). One of my pills is getting exchanged for a previous one because the 3 week prescription is up. Next week, she wants to start me on the Gleevac and fortunately at the level that I seemed to fair well with previously. She’s also good to check my blood levels with it weekly since I have had problems in the past. Dr. F. will be at a conference next week, so I’ll only see the PA next Wed., but she said she’d be available via phone/conference call if necessary. The only other new thing was that she might take me off the infusion antifungal in 2 weeks versus having me stay on the whole time I’m here.
The last thing she gave us was another copy of my bone marrow results, but this time, there was an additional paper and she told us what the percentages were for. My neutrophis was 100% donor. My marrow was 100% donor, and my lymphoctes were 93% donor. That’s the same 93% from last week that she said is difficult for patients to reach 90% and usually takes at least a year. She also told us today that the 100% numbers are also difficult to achieve and often doesn’t happen. I’m still in awe of these numbers. I’m currently above the curve with them, which is just awesome. My next bone marrow biopsy will be around March 15th, but we do not have an exact day yet.
Tomorrow I possibly have my last physical therapy session. Beth, my main physical therapist, is going to try and justify me staying in PT at least once a week after Thursday. She knows twice isn’t going to happen because I’ve really improved. When I started, I said my energy level was 40% and when she asked on Tuesday, I said 70-80%. I think in the end, it will depend on the insurance. I will miss it; it really helps to have someone there to guide you. I find that I work harder. At home, I’ll do 10 reps, but Beth will ask me to try to get to 15 and I try and usually do. She challenges me and lately I’m always tired afterward. Plus, I get sore now, which she says is good. If I feel nothing, then we’re not really doing anything to help my strength and balance.
Joel is sick with a cold he apparently caught while visiting so keep him in your prayers. With two little ones, he needs a speedy recovery.
Related posts:
These figures are no doubt answered prayers. Not only did the marrow numbers reach the desired levels as requested, but they did so in record breaking times.Think about it. Her numbers are at 100%/93%… levels that generally take over a year to reach and many patients are not even able to reach. Yet, here we are at these numbers from testing performed a mere 30 DAYS post transplant.Incredible. Praise God!