Someone recently replied to a post in the 'information on physicians' forum that I share some of my expriences with the Proton Beam Treatment at MGH, so if your interested, I thought I'd just write a few sentances on how it's been going. I had surgery back in October of 2005. My surgery was 14 1/2 hours! It was crazy. The Dr's had to leave part of the AN behind because it was quite closely associated with my facial nerve and a major artery in my brain. I was kinda bummed to hear that they were unable to get it all out and really wasn't looking forward to dragging this out in a prolonged radiation treatment. Som the surgical aspect went really well, I was even back to work in 2 1/2 weeks!
Fast forward to June, 2006 and I begun my proton treatment at Mass General Hospital. Being the science geek that I am, I didn't think too much about the treatment and was more amazed at all the high-tech gadgetry. However, when the Radiation Oncologist told me about the possible side effects, It shifted from the feeling of watching a discovery channel special to being very real. I was quite scared.
I'm now two weeks through my six weeks of proton radiotherapy. They make a mold of your face which you wear as a mask to help keep you still. I'm a smidge clausterphobic, so I was dreaded the mask. It took some getting used to, the staff at MGH directed a fan towards me and the cool breeze really helped. I pictured the mask akin to the one you see Anthoney Hopkins wearing in Silence of the Lambs, but now I think of it more like the Jim Carey Mask in the movie with the same title. Point is, I'm quite comfortable in the mask now, once I stopped focusing one being strapped to a table by my head, and thought of it in a more positive light, it really helped a lot. Now I lay down for the treatment, close my eyes, and pretend I'm fly fishing for Tarpon in the Bay Islands of Honduras, and before I know it, the treatment is over.
As far as side effects go, I'm not sure if I'm exprienceing any. I know that sounds weird, but sometimes I think this is all in my head (no pun intended) I mean, think about it this way. I picture surgery sort of like taking my car to the mechanic. There is a broken part, and the mechanic, or in this case surgeon, takes out a tangible object, and 'fixes' your car. Radiotherapy is weird, sometimes I just feel like I'm sticking my head in a glorified vending machine. I don't feel anything at all. I get occasional headaches, but those are fleeting at best.
The staff at MGH is wonderful, honestly, I never expected anything like the care I've gotten. Maybe I've seen one too many episoides of ER or House MD, (not the same guy at the House ear clinic by the way-I did, after all, find out the hard way) but I was expecting exhausted residents and stressed out doctors. Everyone's been great. My neurosurgeon (dr martuza) is great about answering email quickly and addressing any concerns. Dr. Mckenna at MEEI, and Dr. Loeffler, the radiation oncologist at MGH, have been quite impressive, and available to answer questions all the time. Same goes for all the residents and fellows, I never expected them to be as available, forthcoming and just plain nice as they have been. The nurses, tech's, and even secretaries are awesome! If I was one of those crazy rich guys that could donate a new hospital wing to be named in my honor, I would totally shell out the dough for these guys. Their just downright impressive.
So that's about it. There really isn't too many downsides I can think of, would be nicer if it was less of a major disruption in life, but, I really can't complain. Oh, and the fish tank's in the Cox Building and in the pediatric radiation oncology waiting room are not the most impressive I've seen in waiting areas. Then again, if all I can critisize about the hospital are their fishtanks, well, you can't really complain, can you!
Just thought I would share. Good luck to all of you going through what I'm going through, I'll update this post as I progress through the treatment if your interested in my doing so.
Best,
Jake
