Now I am home, and it has been a few weeks. Paul is back to work, I am training for a 5K and the kids are ready for the end of the school year. My hair started falling out last month but as of now seems stable, however my scalp itself has a weird burn over it. It just hurts, and I can't pull my hair up or back, so I have given in and started sporting a loose soccer Mom ponytail. Every time I glance in the mirror I look sloppy, thrown together, and I am reminded of the truth I so studiously avoid, that the inside of my body doesn't look the way it is supposed to. That I am growing things from the inside out, and there is no cure, and if they keep growing they will slowly take over my brain and spine, and if I am lucky I'll have a sudden aneurysm or just go to sleep and never wake up, but most likely I can look forward to several years of being in a nursing home before I go. I get all of that from a sloppy ponytail. What can I say, its a gift.
Now over this weekend the nausea has come back, and I was hoping to loose a few inches of belly fat from it, but of course I am still hungry as always. My pot belly demands carbs even in the face of nausea. The nausea itself doesn't concern me, but then my brain stem started hurting. (You know you have NF2 when you say brain stem instead of neck.) Then my feet started cramping under again, and my head started ringing... louder than it always does. I whined to Paul that everything hurts, and he nodded sympathetically and went back to watching Smallville on tivo. I wondered aloud if MoFo could be swelling, or if maybe it was just the lack of sleep and abundance of junk food I had stolen from the kids' Easter baskets. Paul shrugged noncommittally, but he did gently rub my neck (brain stem!) until I relaxed.
I woke up slowly, and immediately realized the pain and nausea stuck it out through the night, and "I no feel good" as Mica would say. So I am most likely dealing with a bit of post-rad swelling, which could be a good thing because it means the treated area is reacting. I like to picture the tumor screaming a little as it visibly withers and dies. I'm wandering around half-heartedly cleaning my condo and spending too much time online playing Bejeweled, I can't face the world right now, it irritates me too much. I just can't with some people, I watch them and imagine what it would be like to have a normal life to take for granted and throw away as people seem intent on doing. To expect to live another 30 years (at least) and be able to hear and meet people and listen to music, and ride a bike without falling over, and wear a tank top without people asking what the hell is wrong with my back, and not wonder if a picture I just took will be put up at my funeral. What is it like to just live a typical life? To be asked how I'm doing and answer "Great!" without a hint of irony, to go an entire week without saying tumor, to spend a vacation somewhere other then the hospital, to cough without wondering if a tumor is causing it?
The fact is that this is my life, this is what I get, and I am doing the best I can with it. I fight, I run, I push, I write, and sometimes I yell and I cry. I am human and I am flawed. I'm not always a role model, but at my worst I hope to at least inspire people to question their perception of reality, and to remind people that life is complicated, but life is beautiful. We require pain to appreciate joy, and I may struggle but I am alive, loved, safe and blessed to know how amazing that is in a world like ours. The nausea will fade, but I never will.