My life is as stagnated as this blog. In 6 weeks I have gone from getting up early every day to run my house, care for my kids, bang out routines at the gym, hang with friends and cook fresh healthy dinners from natural ingredients... to laying on my couch with a neck pillow, getting my chores done in increments between dizzy episodes. My life was simple, but it was mine, and I want it back.
Last week I flew out to NIH for my biannual MRI's. I assumed these headaches would be explained away by a sports injury. I would continue to nurse my neck and take Excedrin, focus on yoga and jogging, and then slowly ease my way back into my routine, back into my life.
Instead I was told that one of the brain tumors I had treated with Gamma Knife has doubled in size in the last 6 months and introduced to this image...
The bottom images are 6 months ago, and the top images are now. The left images show the tumors themselves, and the fact that they look black inside is good, tumor necrosis has set in. However, the images on the right show the swelling and fluid around the tumors.
Yes, that top right image is my brain now... and no I am not on drugs. Doesn't it remind you of those old anti-drug campaigns? "This is your brain... this is your brain on... radiation spillage?"
Yes, somehow, radiation spilled into my brain and a huge area of it is crazy swollen. I have no further information until my GK doctor gets me in this week so I can show him the MRI's.
The doctor I see at NIH for the NF2 Clinical History Study said "I am afraid for you." Honestly, that is a bit disconcerting coming from a man who sees worst-case-scenario patients on a daily basis. Apparently the swollen area has a bunch of nerves that control... vision. Yes, my vision is now at high risk.
I can deal with a lot, and I will continue to do so. I cannot even fathom being blind and deaf but the idea terrifies me. I think of how hysterical I was when the power went out and I couldn't find Paul for a few minutes. Everything was pitch black and no matter how loud I called out I had no idea if anyone was coming for me. I sat down and curled into a ball until I felt Paul's hands touch me, and then I just hid in his arms until he lit a candle and shadows lit up the walls. How would it feel to never escape that darkness?
I have to deal with this as I always do, I compartmentalize, and put things away, and just don't deal with them. Dwelling on a hypothetical situation is a waste of time, and I have half-convinced myself that I am being dramatic, and that any day now I will get my life back. But as day turns to night and another day of baby stepping through my chores passes, I can't help but glance at the fear edging my mind as I go about my business.
So, I am on steroids to hopefully bring down the swelling. I am to see Dr. Duma ASAP and have another MRI in 3 weeks. If the swelling or radiation has spread, then I am proverbially f*cked. At that point we would discuss "options" and in the meantime I have been sent home to let my radiation... marinate? I am a total hermit as of now, I am afraid to drive in case I have a dizzy spell or just suddenly go blind. I am bored and feel guilty for trapping the kids when they should be out enjoying their summer vacation. I am consciously forcing myself not to lay all of this on Paul, and trying to do nice things for him whenever I can because I don't want our family to revolve around me, and also because he is an amazing person and pleasing him makes me happy. So today I rest, and come Monday I don't care how I feel I am going to get a little piece of my life back. One day at a time, I will get it back.