On Tuesday I was thrilled to have Heather come for an early morning visit and we did a short walk around the neighborhood in sweltering heat. I stayed in most of the rest of the day and tried some workout stuff in the afternoon. I was able to complete it, which made me feel good, but I’m working at a much lower pace and strength level than I was before. On top of that, my heart rate has been significantly elevated since I came home. I believe it’s a side-effect of the medication they have me on for the infection but my doctor yesterday said, “well, that sometimes just happens with leukemia patients.” I’m not convinced that’s it. This medication – which I really hope is doing some good – has wreaked havoc on my system. I have every side-effect listed on the pamphlet, including hair loss. I made it through chemo without losing my hair but since being on this medication I have started to lose a good amount of hair in large patches. I’m okay with it because I know more will probably come out with future treatment, but I find the whole thing ironic.

So yesterday I was at the hospital from 9 am – 6 pm doing testing for bone marrow transplant eligibility and then squeezing in a doctor’s appointment about the fevers. I’d like to think I did okay on the tests. I saw the results of my chest and sinus scan and those looked okay. The hardest test for me, physically, was the pulmonary test which tests my lung capacity. I know that I’ve had some decreased capacity because of my lack of exercise and the chemo this past month, but I think the bigger problem was that I am used to doing deep, meditative breathing because of yoga, meditation and deep relaxation exercises that I do. For the test, I had to do quick, deep inhales and quick forced exhales and I was having a terrible time with it. I’m hoping I didn’t fail the test, but I’m eager to get those results and the results of my heart tests.

The infectious disease doctor squeezed me in at the end of the day and said, unfortunately, we need a little bit more time to monitor my situation before assessing whether we need to change medications or if anything else is going on to cause the fevers. He still believes the infection is causing the fevers and said that it could take up to 3 months for that to clear up completely. As far as the fevers, he would expect them to start subsiding in the next week or two but he was okay with the plan I came up to keep them under control. However, the transplant team wasn’t happy about the fevers or the infection and didn’t understand how I could start another round of chemo until these are gone. I agree. When you’re on chemo they want you to monitor yourself for fevers continually and you can’t take anything for them because that could mask a fever started by an infection. As far as would make sense to me, I don’t think I could start anymore treatment until these are gone completely.

On a completely different note, my babysitter is out sick today and I am home, completely alone, with my 2-year old for the first time since coming home from the hospital. It should be interesting. I can’t pick him up very well because of my PICC line so that has made dealing with him a little challenging at times, especially when I need to put him in the crib. My 5-year old is at camp and I’ll be driving for the first time since coming home when I go to pick him up this afternoon. Then I have both of them for a few hours until Brian gets home. The best I can hope for now is that the 2-year old takes his nap today! I absolutely love being home with them but I’m definitely lacking the energy I used to have and I’ve found that taking a nap mid-afternoon does a lot to recharge me. Unfortunately, Kieran seems to be cutting back his naps lately and his schedule may not cooperate with mine.