The Waiting Game

I had my 3 month appointment yesterday at Dana-Farber. It was just a routine visit other than the fact they did additional blood work to see how effective the Gleevec has been over the first course of the treatment. What they are looking for is a cytogenetic or chromosomal response. I have already had a hematological or blood response with my blood work returning to the normal range. These next tests look to see how things have changed in the chromosomes. The final thing that will eventually be examined is the molecular or DNA response. I know this sounds very scientific, which it is. The major implication is to see how well the medication is working at this point and can it eradicate the CML. They don't talk in terms of a cure, but rather molecular remission.

The annoying news is that I have to wait for about 2 weeks to hear the results. I have no other lab work or another appointment until September. At that time, I will have my next bone marrow biopsy. This is certainly something to look forward to. Not to be too graphic, but this means that they will stick a large corkscrew-like needle into my back and take out some bone marrow from my hip bone. When I had this done the first time it was one of the most bizarre sensations I have ever experienced. It was not incredibly painful, but there was intense pressure, especially when they removed the needle. The doctors explained to me that there was a vacuum created by removing the needle which led to the pressure. The worst part of the whole thing was the novacaine shots.

During graduate school, while I was working on my dissertation trying to distract pediatric cancer patients during medical procedures, the nurses and the doctors on the unit asked me to help them out with a patient. A teenage boy was diagnosed with a form of cancer which produced a very large tumor on his lungs. He needed to have the same bone marrow biopsy, except that he could not have novacaine. They were worried that if they did this, his lungs could collapse or he would not be able to breathe. They asked me to use my virtual reality distraction to help this boy out. This was the first time I had witnessed this procedure.

During the procedure, I was trying to focus on the boy and trying to get him to play the virtual reality game. His pain was so intense, however, that he could not focus or even look at the screen. He was screaming and crying. I could hear the doctors trying to work as quickly as possible. I recall this awful sound of bone cracking as they pushed the needle through his hip bone. I also remember seeing them twist the needle, like a corkscrew, to extract the bone marrow. Needless to say, my distraction was not very successful since the pain intensity was too much for him. He managed to get through the procedure, but not because I was able to do much for him.

When I was first told about the bone marrow biopsy in the hospital, I vividly recalled the experience this boy had when I tried to distract him. I knew that it would not be as intense for me with novacaine, but nonetheless it was still an ordeal. Now I have three months reprieve before having to do it again.