8/18/11 --Here We Are

So much has happened over the last few weeks I’m still trying to put it all into perspective so for now I’m just going to give a medical update and let you know where we stand. I stayed in the hospital for two weeks and received ten rounds of radiation on my spine in hopes of reducing the swelling and controlling the pain. I’m still on steroids for the inflammation and the pain has started to get better, although all of my activity at the NJ State Fair last week probably didn’t do much to help speed up my recovery. Oh well, it was worth it and I’ll finally have some time to rest coming up. I’ve lost a lot of weight though. I’m down to about 138 lbs. and I started the summer off close to 170 lbs. It’s a good thing these steroids make me want to eat just about everything I see, but I need my body to start cooperating so I can actually do some physical activity and gain some muscle back because it’s so much harder to put that weight back on without doing too much running around. Today I went for a PET scan which was ordered by the doctor who performed my SIRT procedure so he can check the progress of my liver and how the radiation is hopefully doing its job to destroy the disease. Tomorrow I am scheduled to undergo a very highly concentrated dose of radiation to the lesion in my brain which is supposed to be over 90% effective in killing the entire mass. Of course there are risks…many of the risks pose such a small threat they aren’t even worth listing, but it is a high dose of radiation into my brain so I guess nothing should be taken for granted. I went through the simulation stage of this procedure the other day and hopefully everything goes just as smoothly. I’ll lay on a table similar to having a CT scan done except I’ll have my head held down by a device that looks like it should be used in some type of torture chamber instead. I had a custom mouthpiece made which hooks into a metal housing which will force me to be locked into the table. There’s no way my head will move during this as a vacuum will provide extra suction through the mouth piece just for safe measure. To make sure everything is lined up correctly, they made small tattoos on my eyebrow and each side of my head at my hairline (they look like freckles so it’s not exactly Mike Tyson). Only difference between Monday and tomorrow is that tomorrow they will actually be applying the high dose of radiation. Apparently the procedure will take about an hour and a half and I’ll probably lose a small patch of hair about the size of a dime…small price to pay which is fine with me.

There aren’t many side effects, I just need to be careful and report any changes in my vision or if I start having bad headaches that won’t go away. The worst part though…I can’t drive for six weeks because I will be at a higher risk for seizures. This presents a major problem since I’m a commuter student. I’ve weighed all of my options over the last few days and decided that trying to be a full-time student strictly via email until I can finally make it to class in October would be silly and unnecessarily stressful for me. Unfortunately, I’ll have to take a medical leave of absence for the semester. I’m not happy about it, but I just want to get all of this taken care of. I want to get back into a somewhat predictable routine again where I can expect when I’ll feel like crap from chemo or other treatment. It’s been one long and way too exciting of a summer for me and I don’t want to add any extra stress because I just need to focus on getting myself better for a while. The time off will give me a chance to put all of my energy towards RELENTLESS Against Cancer and perhaps start writing a bit more. My time in the hospital forced me to take a very deep look into some issues I had been avoiding for some time. I’m sure it’s standard procedure, but once someone develops a brain tumor, the hospital support staff sort of forces you to start asking the tough questions of yourself and really take a look inward. I’m very thankful I had that opportunity because there’s a lot to think about and consider. I may not make it seem all that serious, but a brain tumor is a brain tumor…that’s as serious as it gets. I’m not scared or nervous about the procedure tomorrow. Things such as pain and side effects don’t bother me anymore. I just want it to be successful. I just want to get those scan results next week and hear from my oncologist next Thursday that she’s confident in whatever plan she has for me going forward. I’ve had an entire summer of getting kicked around by this thing and I just want to know that it’s going to be our turn to be on the offensive.

I’m still trying to put into words how amazing the NJ State Fair was so don’t think I’ve intentionally left that experience out…next week when I finally have some time to relax and reflect I’ll get it all written down because it truly was one of the most fulfilling weeks of my life. But thank you all so much for your love and support throughout all of this…you make it easy for me to hold onto the precious hope that keeps me going everyday.