Day +50

Day 50! Halfway to 100! Halfway there! But where? Where is there? What is the meaning of 100? Are we just looking for destinations that don't actually exist? Landmarks on which to hold small, hopeful celebrations? Because we know that this journey doesn't end on day 100. In some ways, it will just be beginning. The journey after transplant, as I understand it, lasts a lifetime. Things will always be measured in 'before and after' from here on. These are the questions I asked nurse practitioner D today in clinic. I also expressed them to our favorite oncology psychologist, with whom I also discussed my feelings of being nervous that things were going well and waiting for the other shoe to drop in a long series of other shoes. He said, "Boy, we've really messed up your heads, haven't we?" Love him. D said that they do a whole evaluation at day 100, including a bone marrow aspirate. They wean her off of her drugs. By then the transplant should have taken, and we move on to the next steps. (Btw, Claire will have no immunity to childhood diseases, and will need to be re immunized as she will be at risk for those infections.) We will go to clinic less often. All of these things were said along with the words High Risk Disease, as in, Claire is doing great, but with High Risk Disease we usually...with High Risk Disease we sometimes...since Claire has such a High Risk Disease, even though she's doing great, we might...Thanks for the reminders. And we are starting the 10000 dollar drug today, which is literally worth it's weight in gold, since it can seek out any Ph+ cells that might still have survived all of this business and destroy them.

Really, it's enough to make my head spin. Claire's, too, even though she usually seems a lot more zen about it. Then I came home and read an amazing quote that our dear friend and fellow 19 year old cancer warrior posted by Alfred D'Sousa, (and I think Thich Nhat Hanh), " For a long time it seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time to still be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life. This perspective has helped me to see that there is no way to happiness. Happiness is the way."

Indeed.

   Claire with her 6'8" physical therapist trying to undo the damage that has been done to her body.

Me at the gym trying to undo the damage that has been done to my body. Oy.