4 weeks has never felt like 4 months as much as it does today. I’ve been avoiding writing this post. I was hoping I could have a final blog post and just say I’m all good, it’s all over and I can go back to living my normal life. But that doesn’t appear to be my path.
How am I doing? It’s hard to swallow. Two of my favorite foods – steak and sushi – are now extremely difficult for me to eat. My left ear is at maybe 25%. My voice is nasally but better than the whisper I had before the throat botox I got. I’m not in pain, haven’t needed pain meds for a while. My head is numb in many areas. My balance is pretty terrible but I can go up and down stairs without holding the railing and I haven’t fallen over while walking! I walked 2.0 miles yesterday and hit a bucket of balls today at the driving range. I’m sleeping 7-8 hours a night in 1-3 hour segments. Melatonin really helped with that.
I’ve been reading a lot of brain cancer blogs lately. It’s amazing how 10 years can make such a big difference in what recovery looks like. I’m thankful I’m not the first to go through this so the doctors could improve over time and I feel for those that helped pave the way for medicine to get better.
One thing I noticed in a lot of the blogs – people really like naming their tumors. When you have brain cancer, you can do whatever you want, so I won’t knock the people that name their tumors, but I’m glad I didn’t name mine – mainly for two reasons. 1, I felt like naming it would make it more real and I wanted nothing more than to wake up one day and find out the whole thing was a mistake. 2, they didn’t take the whole thing out during surgery so I’d be left with a named deadly friend rather than just a deadly friend.
I didn’t know this until I went in for my radiation appointment, but when the radiation kills the tumor, it doesn’t go anywhere. So even if radiation is successful, the tumor will still be there. I hadn’t thought about it, but it makes sense. Not like the tumor will drain out of my brain or anything.
There are 3 types of radiation that the doctors told me about. “Gamma knife” which is a highly concentrated blast at a small area. And then photon and proton fractional radiation. Doctor speak here: http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation. In simple terms, gamma knife is great if you’re confident you know exactly where the tumor is. But if you miss, the tumor grows. Photon and proton are very similar. You radiate the entire area where the tumor used to be. That means a larger area than post surgery tumor, but it increases the odds that you’re hitting all of it. The big difference between photon and proton is photon has an exit path, proton doesn’t. So you target the entry with photon but it has to leave the body and when it does, it’s hitting stuff you don’t want it to.
Proton is newer. In 2001, there were only 3 machines in the US that could do this. Now there are 12 (I think) and lucky for me, Seattle got one in March of this year. Proton therapy is thought to have less long term side effects. There is no conclusive data b/c there just haven’t been that many people to go through it but it makes sense considering it only hits what you want it to hit.
Radiation will be 5 days a week for ~5 weeks. I get hit with x-rays for a minute or so and in and out of the hospital within an hour. Most of the time is setup to make sure they’re hitting the right area – measure twice, cut once. The docs know how much radiation certain parts of the brain can take, so each day gives me just enough to not completely destroy the good cells. Normal cells regenerate, tumor cells don’t. I’ll have fatigue, hair loss and loss of appetite. Fatigue will get worse during the week and will get cumulatively worse by the end.
The big news is that given how much tumor I have left, for the type of tumor I have, given that I’m an adult (since ependymomas are more commonly found in kids), there is a 40% chance the tumor grows after radiation within the next 5 years. And then at that point it’s either more radiation (take our chances with gamma knife) or more surgery to take more tumor out.
I’ve flipped enough coins in my life to understand my odds.
On the bright side, no chemo. Apparently it’s not very effective for my cancer.
I’m getting a spinal tap June 17 to rule out that I have any tumor cells in my spinal fluid. I’ve had a spinal MRI that was clean so there’s no reason to think there are some tumor cells lurking somewhere but radiation would be different if there are, so the docs want to double check.
To end on a happier note, today is my birthday (33), I’m headed back to work tomorrow to try and start getting back into a normal routine and here are some pics from the last few weeks.
First walk after getting home from the hospital. Needed a walker for a week or so. Porch.com ride intentionally in the background.
My scar. Dad photo bombing. Friends say I should go with “shark bite” since that would make for a cool story. When you start talking about brain cancer, some people tend to freak out.
Beni. I know I’m biased, but my 7 week old daughter is beautiful! And she rolled over today. Twice. So we are totally screwed. Jett didn’t do that until 3 months.
Birthday cake with mom, bro, Kels and the kids.