Lacking Shame: The life of a medical guinea pig

If I don't make fun of it, then who's gonna? (This probably contains WAY T.M.I. for many readers, but if you're intrigued, then by all means read on - random boring "health" details to follow...)

One of the worst side effects of the "poison" (Avastin/Bevacizumab - which was supposed to be over with awhile back) I'm receiving is a nasty nasty rash involving my legs, hands, a few joints, and (ahem) certain regions of major blood flow... Let's call it "body jock itch", except where that normally occurs, it's about a billion times worse, itchier, more painful. Since exercise (walking) has played a key role in general maintenance of my mood/health/sleep/etc. Vaseline has essentially been my best friend, and while I was staring at a large tub of this wonderful de-frictionator, I started writing in my head (this is in no way sexual unless you want it to be) - also there are a few "inside jokes" in the following, possibly to be explained after:


Ode to Vaseline

Vaseline is a wonderful lube.
It's stored in a big tub or a little tube,
Reduces the friction between my legs
When I'm walking; the pain begs
For me to rub it down:
The rashy itchiness makes me frown.
But it makes me smile;
Without it, I couldn't walk a mile.
I love to walk,
And I love to talk.
Without this lube I'd be out of luck
And I'd be stuck
Walking all alone
Along the "tracks" near my home.
I can run off the tracks for an emergency
Because the urge to pee happens frequently;
And then the neighbors get mad at me.
But me peeing on a tree is all they see,
And consequently speak to me very angrily.
I just chuckle: "It was an emergency pee."
Too bad they don't know any better;
Maybe they think I'm a bed-wetter.
But of course I'm not...
But my bladder is clearly not self-taught.
When on my walks it gets distraught.
All thanks to Vaseline.

Completely anti-climactic, I know... but it creates some entertaining imagery especially for myself... my "bladder escapades" - (for example, the short story in the poem that I alluded to is completely true). Somebody getting mad at me for peeing in a tree actually happened - make for some amusing memories (in fact, I had three "rest breaks" on a two-mile walk tonight... I have the bladder of an 80 year old man with an enlarged prostate... probably similar to the guy who yelled at me for relieving myself in his yard... I suppose I can understand, but I hope he can laugh about it by now). Also, I've peed my pants while on the phone talking to my Oncologist (I'm committed to my healthcare, what can I say). Also, having gone through what I've had to has twisted my sense of humor and eliminated my sense of shame and discretion in sharing "personal" (what might typically be construed as embarrassing - a word I don't relate to well) information. The overly-stated cliche that "life is too short" no doubt applies to "taking [life] too seriously" and necessitates a healthy sense of humor. Therefore, if something unfortunate happens to me, I find a way to laugh with it or at it. This entire blog makes me wonder how trying to get myself back into school is going to go...

Also, here's a sincere thank you to one of my best friends and his family for sharing their beautiful North Carolina home with me during a short vacation... It couldn't have been more relaxing, and it was great company... I am very lucky and thankful to have you in my life, and I am always keeping you in my prayers.

BORING HEALTH STUFF:

1. MRI scheduled for Monday... I feel like it's going to be good... thanks in advance for the prayers and good-vibes

2. 3rd treatment of Bevacizumab next Thursday

3. My symptoms are gradually and gracefully improving with a combination of hard work, exercise, good rest, a positive/optimistic attitude, and presumably effects from this wonderfully side-effect-alicious drug killing off some necrosis (caused by radiation - no apologies necessary Dr. B. - I would never have gone for anything differently and it was absolutely worth a shot), and killing maybe a bit of tumor that survived the radiation... only way to know for sure is to cut it out - ugly ugly side-effects from surgery.

4. If my "nether regions" remain pain free, I will no doubt be participating in the Walk Ahead 2011 on Oct. 2 (see previous posts for details)... Well I will definitely be there regardless of how I feel and I look forward to seeing you there (if you join my team you'll get a cool "Matt's Matter Matters) t-shirt from my family and me - we're having about 50 made so I hope at least that many of y'all join us) :)

5. Not so boring, but I recently got approval to drive... which is actually beyond exciting.

I think I've covered it all... it's pretty late and I'm not really thinking straight (I'm a natural poet).

Take care everyone and wishing you all the very best!

Matt's Medical Madness (Update)

Hello all!

I spoke with a neurosurgeon today (the doctor that performed my original biopsy), and received what I perceive to be excellent news. He said that the current situation looks like the result of radiation necrosis (aka damage from my most recent treatments a few months back), and that I'm receiving appropriate treatment (Bevacizumab, which I had my second dose yesterday). He feels confident that there is no need to do any further cutting (brain removal, etc.) and that based on a short neurological exam and seeing me in person that I am doing well. The only down-side is that I have to deal with the unfortunate side-effects of the "poison", including a pretty nasty rash along with waking up at night with extremely painful muscle cramps ("no pain, no gain" - I "hate" cliches) in my left side muscles (which is also a good sign that the drug is working). I am working on reducing the amount of meds that I have been taking every day (call it about 37-40 pills), which is pretty sweet. I think my liver and kidneys are looking forward to that. I am also busting my butt doing O.T. exercises as much as possible and seeing a Certified Hand Therapist (CHT) a couple times a week, as well as walking as much as I can (exercise is excellent for patients undergoing chemo, and it's great for everybody anyway). My next MRI is scheduled for a couple weeks from now and I am due to visit my Neurologist next week, which I am excited about... the docs in Bloomington are fantastic (not that the rest of mine aren't... I think we have a mutual "love" for each other... we always keep humor in medicine and my personality is perfect for that - I like to brag about that). Another potentially good piece of news is that, depending on approval of the Neurologist (which could make him my favorite person ever, except for my parents who made me - eew), I could get my driver's license back since there is allegedly no Ohio law pertinent to seizures and driving... just obnoxious paperwork and perhaps another driving exam. Anyhow, I am extremely happy with how things are going and as always I'm looking forward to the Brain Tumor Walk on October 2nd (if you have anything to spare, please make a donation, join my team, or continue to provide my family and myself with your tremendous amount of love and support).

Keep the faith! - sigh, another cliche.