Day +26(I think)

Looks like being at home is making me a little less eager to post updates. I think when I was inpatient, the internet was one of my few forms of entertainment most of the time, and I didn't have to leave my bed to access it. At home I haven't always had the energy to sit in front of the computer and type, and I also have more space to roam and Isaiah and Kate to socialize with. Anyways...heres what has happened since I've been home.

About 12 hours after getting home from NIH last week, Kate and I were getting up to get Isaiah off to school and then to my clinic appointment Thursday morning. Everything at the clinic went pretty well. Its the same place I've been going for my clinic visits with the chemo team, so I'm already familiar with a lot of the staff. The visit took a few hours, and most of that was waiting around. Most things looked good from the doctor's standpoint, but I did have to stay a few extra hours to receive IV potassium. It was a pretty simple visit, but it was hard to try and adjust my schedule from being an inpatient who barely got to sleep before 6 AM, to an outpatient who had to be up by that hour.

At home that night I got a call about my Tacrolimus level. That test result takes a few hours to reach, so they didn't have it for me before I left the hospital. Apparently my Tacrolimus level was 22, when they want it between 5 and 10. The highest I had been during my inpatient stay was 16, so that was shocking to me. I didn't feel any symptoms, so that was good. They wanted me to come in the following morning to have my level redrawn. So that was a bit upsetting to have to head back to NIH on Friday, when I was expecting not to be heading anywhere that day.
My Tacro level on Friday was 9.8, which was reasonable. They had me cut my dose in half, which is no problem with me, and apparently today that level is still good.

My two main issues...the bladder and GI tract, were not exactly making me feel good on Friday. I felt like I was constantly heading to the bathroom on Friday, and I was worried that if things continued I would have to head back over to NIH. However, by Saturday afternoon the GI issue was a lot better, and by Sunday I almost felt like normal. During that time my appetite got a lot better. I was able to eat 3 meals Saturday, Sunday, and today. Kate was extremely excited yesterday at how well I was eating. She could notice the improvement in how I felt based on how I ate, and I noticed it by my less frequent trips to the bathroom.

Today was a visit to the day hospital, where I had my blood drawn and a chest X-ray. The blood results came back extremely positive, and I didn't have to receive any supplemental IVs. My hemoglobin was a little low, so I might need a blood transfusion some time soon if it continues to drop or I start feeling symptoms of anemia. However, I felt really good today. At one point I ran up the stairs without thinking. As I got to the top of the steps, I was surprised by what I had just done. I hadn't forced myself to do it, but it just came naturally. That was great progress for me, especially since the climbing of the stairs was a big adjustment on my muscles after not heading up a single stair during my entire hospital stay.

Right now I am feel very good. I am still way more tired than I would regularly feel, but the issues I did have are clearing up, and no new ones have come up. I am extremely positive with my progress, but my doctor did throw in a reminding thought today that we are still early in this progress, and potential problems could still come up. Moving forward this week, my family and I would like everybody's prayers to focus on great results from the PET scan I will have on Thursday. What is seen from that scan will likely determine what changes if any are needed for my course of treatment.

Its great to be home, and to feel my body improving. Sorry to anybody who was disappointed by the large gap in updates, but take it as a good sign that I am living my life a lot more than I was while in the hospital.