Over the Red River and just across the state line, things are quiet. Too quiet. It has been nearly five weeks since I signed consent to participate in the MEK162 clinical trial. On that day, the researchers seemed thrilled to have me. The head doctor was extremely interested in Monster and our history together. She promised that they would work quickly to obtain and dissect a tissue block from one of my debulking surgeries. That did indeed happen, but with unfortunate results: There were not enough cancer cells in the sample to qualify as measurable. Monster did not meet their strict criteria.
I was slightly confused, but of course I granted my permission for them to try again. A second block of tissue was FedExed to Oklahoma, and the investigational researchers got busy doing their thing. After another week of waiting, I called and was given news that I did not care to hear. Sample #2 was also a bust--the necessary slides were easily made, but none of them contained enough tumor.
"How can that be?" I asked Michelle the research nurse. "There is plenty of tumor in there! I can feel it!"
Michelle suspects that during each of the surgeries, the doctor cut out the tumors (which he was supposed to), but did such a good job that there was very little left over for remaining tissue. In other words, I was greatly debulked. That is good for surgery, but bad for research.
I should have started treatment by now. I need to have started treatment by now. Monster has made his presence known in a few new and frightening ways in my body. Dr. F says that there is nothing to be done but to proceed with treatment as quickly as possible.
After all this waiting and receiving discouraging news, I was not quite prepared to make the decision that was presented to me yesterday. I could a) be released back to Dr. F to receive the standard of care (read: chemotherapy), or b) travel to Oklahoma for a scan and intense biopsy. I have already taken every chemo drug that is considered "standard of care" for ovca patients. Each drug was unsuccessful. I chose to pack my suitcase and go north.
Of course, nothing can be simple or easy. The appointments must be done at certain times of the day with certain medical personnel. That means more waiting for me while Oklahoma tries to get their act together. With any luck, I will be able to travel next week.
Through all of this, Monster lives. He is such a pain (literally!). I think of him as being like those animated germs in the Mucinex commercials. You know, the ones where they set up homes inside the sick person's body? They stay there, relaxing in their easy chairs and inviting their friends in, until the miracle Mucinex comes in and kicks them back to the curb. I feel like Monster has claimed my body as his own personal space. He doesn't care that he is creating chaos. He only cares that he has found a good spot, and he is fighting to stay put.
Although I am frustrated and discouraged, I continue to fight. I get out of bed each morning, determined not to let Monster change my life, or even cramp my style. I have three very good reasons, after all, to fight back...they call me Mom.