Got a call this morning from CuraScripts (the online pharmacy I deal with) this morning to set up my next Temodar shipment. Even thought I fully realize that I know we're counting down to the end of my experience with Temodar, still that acknowledgement gave me pause, even it was for only a moment.
Because, it means that I have done 21 five day cycles, plus one 6-week introductory regimen.
And while I hate it, the way it makes me feel, those days that me feel completely muted in every way, in some respects its one of the badges of honor I wear with fierce pride, like my hard-born scars, and now my tattoo.
Last entry, I talked about my first one, called "RED". Ramona-Esme-Dana, the three women in my life when we started relationship. My wife's red hair. In some circles, her nickname.
Dana and I watched "Murderball" tonight. If you haven't seen it or if you're not even familiar with the premise, murderball is a colloquialism for paraplegic rugby, which is a brutal sport in best in circumstances with all of your faculties, let along differently abled.
The thing about it that killed me is one of the subplots when they introduce Keith Cavill, a motocross rider who was hurt on his bike, rendering him largely functionless. After 10 months of intense physical therapy, he finally gets discharged from the clinic he was in, all smiles, only to realize that when he gets home, the wheel chair apparatus that is waiting for him just completely immobilizes him emotionally.
Basically, he gets to start all over again from scratch.
At that point of the movie, I just started bawling. Hit a little too close to home.
One of the objectives of therapy is to make you more functional than not. I remember Sari, the social worker so instrumental in getting me back home, so the point that she literally pushed my wheelchair to discharge. My mom said that Sari told her that I had exceeded her hopes for me, which was kind of funny, because I felt like I couldn't do anything.
It takes so much time and effort to do the simplest of tasks, the things you take for granted.
Anyway, its easier for me now to see some of the pictures from that time, especially that I can walk and talk and do almost everything I could do before. Still ...
So, here are some of the pictures I hadn't shown before.
11/19, discharged from USC. Fucking exhausted.
11/26, Pre-op mapping ...
Not entirely sure what day, but it's before rehab ...
12/12, figuring out how whole "left foot, right foot" deal, under the close watch of Andrea, my physical therapist.
12/09. Because I needed help even getting to bed, we'd have to organize who was staying in my room each and every night. Bob drew that duty that night, but not before we all hung out in the plaza.
12/14, Discharge. The best beard I've ever grown.
12/18, First day for or outpatient radiation. Clearly, I needed a whole new look.
I haven't blogged about my cancer very frequently these days. Part of the reason why is there's a inverse correlation between feeling healthy/energized and focusing on the cancer.
Which, of course, doesn't mean that I'm not ignoring it; on the contrary, I think about it all the time, but now, it's more an actionable, visceral thing, as opposed to a introspective thing. And because of that, it's easier to just do it.
Last Saturday, Dana and I met up with Bill Parent and Kevin Parent to have lunch. The next night, I talked to Gilbert, another GBM battler from Oklahoma City, and I really didn't even thing about blogging about it at all. Rather, I went to see a few bands Saturday and Sunday night. Saw The National at the Wiltern in L.A., and Sunday, saw The Mars Volta at The Palladium.
So, I guess that's the only point ... right now, live is easier.
This morning, I took Ezzie to the JPL (Jet Propulsion Lab) trail in Pasadena, our first chance to see the post-mortem from the La Canada fires. In some respects, it looks like a nuclear winter. Barren and desolate and completely ashy.
I didn't mean to take a powder for for two weeks, but that's how it turned out. I was gone for a nearly week in San Antonio, and when I got back, I needed to serious sack time. It's amazing how you're able to maintain focus and energy during these NSC (National Sales Conventions) even though you just want to sleep.
Compare to last year's NSC, this was 180 degrees different. New company, new mission state, even new colors.
During one of the breaks, I checked my email, and saw that Rynell, from Imerman's Angels, was trying to contact me. I called her the following day, and got the dilly-o on another meet up. This time, I'd be the survivor, not the battler, so to speak.
Even though I wouldn't classify myself as a survivor, I do understand the distinction.
In the larger scope of survival, its important to know others are dealing with it, and because of that, there is no way I'd decline this opportunity.
So I called and left a message for Gilbert (Oklahoma City), who has GBM, as well. I don't know where he's in his recovery, but I'm looking forward to finding out.
Had an infusion of Avastin this morning. Started Temodar last night. Tarceva, still ongoing.
Trifecta!
Actually, its not really bothering me too much right now, especially considering that I self-applied the Sancuso patch, and it didn't really take, meaning, I screwed up on the application.
Chris Carr I'm just a 37 year old kid from Detroit trying to beat cancer... I'm sure you'll find out more through my entries...
Brain Trust The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among People affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Our goal is to provide and improve online communication resources. (Our current online support groups cover a range of brain tumor types and other special interests.) Through these and other efforts, we are building a global community of People whose lives are affected by brain tumors, brain injuries, and related issues.
Imerman Angels Imerman Angels is a federally registered 501(c )(3) not-for-profit organization providing one-on-one cancer support: connecting cancer fighters, survivors and caregivers.
C.E.V.A.N. Louie Foundation This is a blog to share your stories of survival and those who may have lost a beloved family member or friend to the disease.
Tug McGraw Foundation The Tug McGraw Foundation was established to raise funds for pioneering brain tumor research and to increase public awareness of the disease.
Virtual Trials Clinical trials and noteworthy treatments for brain tumor.
