About radiation

So this past Friday we found out more about my radiation treatments as well as my continuing cancer treatment for the rest of my tumors.

I begin radiation on this Friday. I'll go for a total of five days, every other day (and skipping weekends). So I'll be finished on August 4th. Again, I don't know the side effects, but the doctor has said he'll not start me on any extra medication that I don't need. If there is swelling, I'll likely start on steroids again. Fatigue can be fought with sleeping and napping. Anti-emetics can be used for nausea if the need arises. I'm hoping for no side effects, but we all know how that goes. I got fitted for my mask last Friday and I want to say I handled it pretty well. It keeps your head in place so you can't move it which can be kind of disconcerting. The main problem I have with it is you can feel your blood pulse around your jaw and I instinctively want to swallow.

As far as my other treatment, we're going to go two weeks out from the radiation and do another brain MRI. If the brain looks good, I'll begin a new treatment. Right now it's designated MK-3475, but is also known as pembrolizumab. It's still in a "trial" phase, but it's so close to being approved by the FDA they opened up what is called a expanded access program. An EAP isn't as limited as a clinical trial and they work with patients like me to basically open up the drug to more people. As long as I meet some basic criteria (like the brain is stable), they'll likely start it soon after my birthday in late August. What a gift!

But first, the radiation! I'll try to let you know how it goes, but I may be out of it.

So, what now?

2 weeks post OP. I feel good for the most part. Mainly the steroids are doing a number on me as far as sleeping too little and eating too much. But I'm not in any pain, just need to get back on a regular schedule and slowly start to work my body a bit at a time. I'm also slowly adjusting to laying back down in bed again, as I've been sleeping on my back in a recliner because of the suture.

Post OP - 1 week

Ok, so it's been one week since my surgery. But I'd like to fill you in on the events leading up to that, since they are also important.

I was all set to go in on June 30th. The Monday before that, I had a second seizure (since my first back in May). They held me less than 48 hours and sent me home Weds morning. Increased dosage of anti-seizure meds to tide me over until the surgery and monitoring in case I got worse. I didn't have another seizure, but I could tell something was wrong.

First, my hand on my right side started to lose fine motor control. Not enough to be noticeable right away, but about Thursday it became increasingly noticeable. By Sunday night, I felt like a cripple, forcing me to do everything with my left hand. On the plus side, no significant loss of strength. Also, for the past few months I've felt my speech deterring slowly, and this got increasingly alarming over the week. I spoke way more slowly and slurred (especially when I was frustrated, which over the course of the weekend also became an increasing factor).

Monday was the day. I don't remember too much since they prepped me and had me under the works for the good part of the day. I have an incision from the top of my head to about my ear straight down. I was kept in the ICU overnight and on the floor about an extra day and sent home. It was... amazing how quickly they turned around on me.

So, the results:

• I did another MRI Tuesday night to search for remnants of the tumor. The surgeon said there is "no traces" of a tumor left. Now, this doesn't mean there aren't any there. They might be microscopic cancer cells to small to pick up. But the "big debris" is gone. I'll likely go in for radiation to "dust" for the small cells, but I don't know much until later next week.
• I will also need to at some point have a CT/PET done to re-evaluate the tumors that are left in my body. They'll likely treat the head first since that will be the all or nothing spot for the time being.
• How is my head? Surprisingly well, considering. Obviously the first week there was a lot of pain and swelling, but we've managed it with pain killers and steroids so far. I've been decreasing slowly off the Vicodin and the steroids and should be completely be free of them by next week sometime. The incision is clean and there is no sign of infection.
• My fine motor skills took about a week to completely deteriorate so I wanted to gauge how they'd be after a week. Well, I didn't expect 100% but they are working there way back up. I have a set of therapy exercises I can do to flex and work the muscles back into working "properly". I still notice some deficiencies in typing, pinching and working some of the really fine motor skills. I will actively go in and see a therapist two times a week. But I have no loss of strength as far as grip and squeezing.
• As well, I will have speech therapy to work on my talking again. It's not too noticeably bad, especially if I speaking slowly. But talking fast makes me stutter and slur/skip some words. To the casual listener, it probably won't pick up. To all my friends and family it should be noticeable.
• As well, we will work on my jaw. When I first got out of surgery and the first couple days, I could hardly open my jaw to eat because it ached. Similar to having your wisdom teeth pulled, but not as intense. Since then, I've been able to chew just fine but my jaw hangs up on the left side where they actually did the surgery. The doctor said they the muscles they might have cut into there could have an effect, but whether it's temporary or permanent will yet to be seen.

So yeah, a week after brain surgery I feel better than I had hoped given the circumstances. As I learn more, I'll keep you up to date.