Hey all!
I haven't had much to write about lately (and I guess looking at my previous post I never even edited it), with not feeling well and being very tired pretty constantly, I've been stumbling through a lack of motivation, but I figured since I'm not doing much on a Saturday night (which is normal lately), I'd go ahead and scribble something up.
To update the previous post, I continue treating the "area of concern" (which the docs are pretty certain is indeed necrosis - a good thing and I'll explain why shortly) with Trental and a Vitamin E supplement (which didn't seem to help, but makes sense to keep trying since it's not giving me any side-effects); I also recently began a low-dose regiment of steroids (bleh), which as usual are wreaking havoc on me with regards to side-effects (more manageable than previous higher doses). Moreover, on Monday I will finally begin a 12 week, M-F per week, hyperbaric chamber oxygen therapy treatment at St. Elizabeth's Hospital in Covington, KY (60 total "dives" as they are called because the atmospheric pressure is increased in the chamber akin to scuba diving - I guess). I personally ruled out Avastin as an option for treating this because (as some of you know) gave me a rather (ahem) uncomfortable side-effect (for those of you who don't know what it was are probably better off). Again, surgery is still pretty far off, but I'm not sure which I would prefer between that and Avastin (if that tells you anything about what that drug ended up doing to me).
Anyway, that's how we're going about treating this butthead (I didn't even realize that could be a pun until I typed it). Necrosis makes more sense than tumor activity simply because of how rapidly the area grew over a month. My tumor has never (to our knowledge) grown that quickly or been that "active", and especially since it was definitely hit with a heavy dose of radiation, it's probably just dying tissue (yay for still having the brain damage excuse!).
During the past few months, I've bounced back and forth seeing an occupational therapist without promising results (I started off poorly, then improved drastically, then collapsed to worse than how I started... all probably due to a splint I've been wearing to stretch out my tendons to help break up some muscular tone in my hand, not to mention my lack of exercising at home due to all the other crap I'm fighting through), and will probably be seeing a certified hand therapist (CHT) while I endure the good times in Covington, KY in a glass tube filled with highly pressurized oxygen force feeding my tissues with goodies - not at the same time... I also recently went to a sleep clinic ("results" Tuesday-ish) to find out what's going on in my sleep, which could ultimately help fix my seizure issues (but probably by using a CPAP - continuous positive airway pressure - machine, which is miserably uncomfortable - I've had one in the past and couldn't tolerate it, but apparently they are more comfortable now). I think I might have mastered the art of adding tangential thoughts within sentences (I feel dizzy just writing that last one, so I hope it makes sense - I'm not re-reading this). I have also been able to get out and walk for short durations, which is helping to strengthen my leg and keep me fit(ish), but again, some days I just don't get off the couch. I've gotten people pretty upset with me for being completely candid about how I'm feeling and/or how I make fun of myself... too bad. I also have enjoyed and benefitted from several massages (I don't think I can go back to not having them). That was a boring/dull ending to a paragraph.
Here's a question to address from one of my OT friends in Pitt:
"Are you experiencing any changes? Are you still using the CIMT or is that on the back burner right now? Also, maybe I should already know this, but is it your primary motor cortex that's affected? Any sensory or anything? I'm totally into neuro right now -- kinda what I'd like to get into one day, when I'm a grown up OT -- so sorry for all the questions."
The changes are unfortunately mostly that I'm getting physically weaker due to the damage from the radiation (though once I get the energy to work it, I'm certain I'll be able to recover to at least 85-90% of "normal" - yes CIMT, among other things besides the dorsal wrist splint, is on the backburner for now until I start back up with the CHT)... The surgery from 2 years ago removed a majority of my sensory cortex, but the radiation hit it all, so there are indeed issues in the motor cortex as well. It also affected my pituitary gland, causing a variety of hormonal issues (not like PMS hormonal, though the roids do that sometimes, but more like I need various drug supplements that the pituitary now struggles to produce).
Whew! I think that covers everything since the end of radiation! I need to write a bit more often I think. I'll try to put some MRI pictures up so you can see the "angry spot" and the other goop.
Also, check this out: my friend is trekking from Fountain Square in Cincinnati to Los Angeles to raise funds and awareness for the American Cancer Society. He is an amazing inspiration. If you get a chance to follow him and possibly throw a few bucks to the ACS through his website ("Donate" at the top of the page), it would be greatly appreciated. He needs all the prayers and support that anybody else does. His site:
http://trekforthecause.com/
Thanks for reading!
