Day +173

I continue to work and this past Friday was the first payday since I've been back. The check came in the mail with a whopping $13.73 made out in my name! Well...it was only two days worth of work, so it wasn't quite a full paycheck. However, even when I am receiving my full pay checks, they will not be their usual amounts for a while. When I took medical leave in December, I elected to continue with our health insurance through work so Isaiah and Kate would still be covered. The options we were given were to either pay as we go or to incur a debt. Since we would be short on money for other bills anyways, we decided to incur the debt, which would then be deducted when I started receiving pay again. About six months of health insurance premiums is a good amount of money, so the debt won't be paid off right away. I was expecting the full amount of my pay check to go towards the debt, but I guess somebody felt I needed that thirteen dollars for something. I'll have to check with payroll about how long it will take to pay off the health insurance debt, but finances are still an issue despite being back to work. At least I can take solace in knowing that avoiding the insurance system and getting my care at NIH has helped our family immensely when it comes to money.

On to the health stuff, I was given an antibiotic last week for a bacterial infection, and it seemed to clear up my congestion pretty well. The members of the team I met with last week were hopeful that when that cleared up that my swallowing might improve, but that wasn't to be. My throat feels a little better, but it is still painful to swallow. I lost another four pounds this week, so I'm still having a hard time with eating. The GVHD on my skin and in my mouth has been pretty stable though. Any changes with those have been pretty minor. However, the GVHD has been getting worse below the belt. I met with a couple of infectious disease doctors today who shared that the problems there aren't the results of any infections. One of the doctors from the transplant team took a look at what is going on and stated that it looked like GVHD. Dermatology has been trying to help me out with that, but nothing seems to be solving the issue.

This doctor from the transplant team seems to feel pretty strongly that its time to put me on prednisone. This would be the systemic steroid that would clear up the GVHD symptoms relatively quickly. He explained that my GVHD isn't serious at this point, but that he doesn't like where its heading. I'd be relieved to start the prednisone and to have these symptoms improve. However, the prednisone would decrease the potential graft versus tumor effect, and there is a small fear in the back of my head that it might be best to hold off on it longer. However, I also might be fine and no growth would occur if I started prednisone now. Its impossible to know what will happen with cancer. Right now though the improvement in quality of living would definitely be welcomed.