Are we there yet?

I was in Seattle the last week of February for my annual bone marrow transplant review. This review includes everything I have gone through the past 12 months to knock out the bad cells in my bone marrow. The review was three days of testing and gathering samples (extensive blood draw, pulmonary function test, a bone marrow biopsy, a bone density check and a chest x-ray) and a review of findings on the fourth day. Through the year, the reports we have received have been fairly positive on fighting the amyloid. We anticipated the reports to be nothing different from the testing. I expected that I could go back to work and start living a normal life in a few months. That was not the case. The transplant doctor told us that the bone marrow biopsy shows the amyloid still lingering; it was not getting worse, but the progress to wipe it out was too slow. The bottom line was the preferred option was to have a second transplant. The news of this made me numb. I had just spent the past year in solitude protecting myself from any sickness as my immune system was so weak. Now I was being told that I can expect to do this again for maybe as long as another 12 months. All the questions Rose and I had to ask did not seem to matter anymore. The doctor told us there was another option of being part of a trial study with a new drug that has not been approved by the FDA. This would likely require living somewhere else in the country. Right now I have asked several health professionals and our insurance company to gather information for us to help us see what our best option is for all of this. For two days we were spinning trying to understand how we got to this point. We are handling the news much better now.

This is like a race where the officials hold up a sign that show you have “4 laps to go. When you complete the next lap you expect to see the sign that shows “3 laps to go” but the sign says “20 laps to go”. What do you do? You can protest and get out of the race, or you can dig in, go the distance and keep moving until the officials bring out the checkered flag. I was sure I was going to see the checkered flag soon. Now it seems that I have a bit further to go. The realization that there is more time and distance to this was a bit demoralizing. One gets past this and keeps going.

As we find out more information on what we are going to do, we will post it here.