Yesterday was my 6 month MRI, the longest I have gone without an MRI. "Watching and waiting" is the most difficult part of living with a brain tumor. I prefer being active in treating the tumor. K and I went on an amazing trip to Costa Rica last week. We returned to NY Tuesday morning at 1AM. My MRI was at noon on Tuesday. It was the best and worst planning. I worried less about the MRI because I was busy in a beautiful country. This was one of the few vacations that I could actually relax because everything was planned before we left. I held all my anxieties about the MRI to myself because I did not want to ruin a great vacation. Yet I was mentally and physically drained going to MSKCC shortly after flying all day.
As soon as I got to radiology I was called into the MRI suite. I was shocked that I did not even have time to fill out the paperwork. It was nice to not have to sit in the waiting room full on anxiety. I was unable to take my usual nap in the MRI because my technician was too chatty. He could not believe that I usually slept through the scans and felt the need to walk me through each set of pictures. It is funny how the nurses and technicians treat me like a newbie to all this because I am only 29 (and look even younger). I have been getting MRIs since I was 15, I know the deal by now. Even looking at the info they have on hand they can see I have been getting MRIs at their facility for 2.5 years. That is a lot of MRIs.
Luckily my neuro-oncologist schedules my appointment with her only 3 hours after my MRI, so I get the results right away. The second her newest fellow came into the room he said "the MRI shows no changes, okay now that is over with I can ask you questions," What a relief! I am glad that he realized that I would not process anything he said until I knew the results. He asked a lot of questions about how I was doing, not just about the tumor itself. Even when my doctor came in she seemed to really listen to my concerns. I felt she looked at me like a person not just a case that might need medication adjustment or further testing. Unfortunately she did not have any information to give me on how I can improvement my quality of life. She validated my concerns, but had no new answers. I know there is not much to be done about my cognitive issues, but I was hoping she could come up with something for me to try.
I really feel trapped in my life right now. I am barely holding on to my responsibilities and I fear any change will cause me to fall off the edge. I would love to possibly work in a different setting, but I do not know if I can handle working in a new environment. I am in constant fear of people seeing my difficulties and even worse not being able to do what I love.
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