Monday, April 25, 2011

Spring Cleaning

Earlier this month Paul and I packed our bags, left our kids and dogs in other people's care, and booked a hotel room in Palo Alto so I could go through 3 days of Cyberknife treatments on 3 tumors in my thoracic spine. They looked like 2 on the first scans, but turned out to be 3, all facing each other with my spine in the middle. They had only grown slightly since making an appearance a couple of years ago, but that growth has been steady and measurable, so with Dr. Adler's help I got set up with his team at Stanford and had these suckers zapped. You may remember just last month I had 3 small and 1 long brain tumor all treated with Gamma Knife in Newport Beach, so after this treatment my grand total for Spring Cleaning would be 6 tumors in 2 months. Seriously? All of the treatments were outpatient, and Cyberknife specifically was very easy to go through. I called my treatments my "Radiation Naps." Paul and I even ran the Golden Gate bridge one afternoon after leaving the Cancer Center, and I only had about 3 days of nausea to remind me that anything had happened at all.

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.

1 comment:

Sarah said...

As always, Olivia, your writing is quite poignant and makes me cry. Your courage and humility are amazing. Thank you for being such a good friend and role model

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