Sometimes I feel like a ping pong ball. Just when I think my direction is fixed, and I know where I am going, something happens that sends me in another direction, Just like a ping pong ball, my emotions feel battered and disoriented, spinning seemingly out of control.
This happened after my last visit to MD Anderson. We were finally told by my transplant doctor that a “window of opportunity” had opened for the stem cell transplant. We were happily on our way to complete healing. A few days later, the transplant coordinator called with the news that a donor had been contacted and the process was beginning. It would take less than four weeks before we could begin. YES! Our direction was set. Slam. Point. Game was about over.
Then came the return slam from my CLL physician. He actually called me at home – the next best thing to a house call. He and the whole CLL team, including the department head, examined my case and were concerned that I was abandoning the ABT-199 program too early. Yes, the most recent CT scan showed the requisite 50% reduction in node size, but their concern was that it was not enough. The trial treatment was working well. They thought we should wait and see how far the new drug would take me. Whoa! I didn’t see that coming. I had assumed that all the doctors involved had discussed my entrance into the transplant phase. Word of advice: never assume anything.
We struggled with the decision. Finally, I called the coordinator and asked her to put everything on hold while we discussed the situation. I was spinning like a ping pong ball with a lot of “English” on it (“spin” for those who are less knowledgeable about ping pong or pool). After several rather sleepless nights, I had the opportunity to talk to a friend of mine who just happened to be a retired oncologist. I trust him. After briefly outlining my situation, he advised me to stay the course with ABT-199. He explained that the smaller the nodes, the better the chance that there will be NO GVHD – guest verses host disease. He went into some detail with his explanation. I thanked him for his time (between services at church).
The next day, I hoped to visit with my local oncologist. I had a blood test scheduled. I went to the phlebotomist expecting a finger prick. Instead, I was informed that I would see the doctor. OK. That was easy. A few minutes later I was called back to an exam room and answered the prerequisite questions: all “no”, nothing had changed. After another few minutes, Dr. Kota entered my room. She wanted to visit with me to ask questions about my experience at MD Anderson. (That’s another story but it explains why the unexpected visit.) I outlined my concerns with her as I did with my friend. She smiled and agreed. I should stay on ABT-199 as long as it was working.
I sent a message to both doctors at MD Anderson saying that I would postpone the transplant. I feel secure with that decision. I am no longer spinning. I get a good night’s sleep. I do wonder when the next slam will come sending me in another direction. Hopefully not for several months.
I feel less like a ping pong ball and more like a well-loved teddy bear resting in the arms of a loving medical team – and a very loving Father-God.