They Call Me Galvez

I had the privilege of attending my first brain tumor specific conference at MD Anderson last weekend and it left quite an impression on me.  It was co-sponsored by MD Anderson Cancer Center and the National Brain Tumor Society.  Personally, I like it when two monster organizations collaborate on events and show unity against a common foe!  It seems like I always find a handful of young adult survivors at these conferences!  We tend to gravitate towards each other because we totally stick out.  It may be due to the fact that we’re the ones that tend to be the loudest and have the most “spunk” at these conferences.  Whenever I go to these things, I feel like I’m crashing a “grown-up” party.  I’m always happy to come across a fellow young adult survivor because we are familiar with what the other has been through and are eager to “celebrate” life.  It makes me want to celebrate because you go from feeling alone to having someone there who understands. Young adult survivors are too young to get grouped in with the older cancer patients our grandparents age and too old to be grouped with the pediatric population.  In the young adult population, many of us are still trying to find our life path or are just starting our families.  A tumor or cancer diagnosis can seriously derail our plans or limit our potential.

This weekend made me realize that we can fight back.  Emotional support for survivors is growing. Survivors are getting stronger through the numerous programs out there, but I think it is time to mount a counter attack directly on these diseases.  Unity for survivorship is very prominent, I think that concrete strategies are just now developing to fight these diseases. Then it reinforced a weapon that we can use to fight back against these diseases… RESEARCH.  I don’t think people really understand it, but this is the best way.  People walk charity walks and hold fundraisers, but what exactly are you supporting?  Stand Up to Cancer and the Brain Science Foundation are taking the lead in this charge.  I personally think a “cure” is still a long ways away, but I think we have the resources to more effectively manage the symptoms to live with these diseases.  As a physical therapist, I know that we can’t always heal a chronic orthopedic issue, but we can offer strategies to help manage them. 

I think that we will have an easier time controlling the diseases through:

1. early diagnosis,
2. lifestyle modification (diet, exercise),
3. medication, or
4. surgery

I think this is a more efficient approach to the war on cancer rather than finding an absolute “cure” for tumors or cancer.  In a way, I think we can make these diseases our “beeeee-ooootch” by more efficiently managing the symptoms!  HAHAHA!

Anyways at the conference at MD Anderson, I was able to connect with so many amazing people:  survivors with incredible stories, doctors/health care professions who devote their lives to helping brain tumor patients, and philanthropists who work tirelessly to fight these horrible diseases.  The most memorable thing that I will take home from the conference was meeting so many people similar to me face to face!  I’ve been to cancer conferences and meningioma meetings, but the informal interaction with the participants at this conference made going all the way to Houston worth the energy.  Although I am physically tired, I’m emotionally recharged!   TUMORS SUCK!  Wait till you see what mAss Kickers Foundation is up to…

I have a suspicion from my last PT session that my ankle, knee, and hip righting reflexes are still messed up.  I have a very strong tendency to “lean back.”  When standing statically, my toes push into the ground (plantar flexion), knees lock in extension, and my butt sticks out (hip flexion).  I think I demonstrate a “posterior lean” in both static standing and ambulation.  This may be part of the reason why I have a hard time walking… my tendency is to lean backwards.  We noticed this when I walk on my knees.  My hips don’t move forward at all!  To address this, maybe I can go back to my wrestling days.  This motion kinda reminds me of shooting in on an opponent’s leg.  We had just started addressing walking on my knees at the other rehab center, but my focus wasn’t on trunk position.  I was only focused on knee placement/advancing the knee.  By “walking” on my knees, I’m taking out the excessive plantar flexion and excessive knee extension, and ULTIMATELY  focusing on controlling hip extension.  Things are starting to make sense.   I think we are taking the right approach focusing on proximal joint stability in the hips.  I have been focusing on core stability.  I think the hip stability/positioning is where I will focus my strategy.  We’ll see how it goes…

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Last week I took the train up again to Los Angeles, for an awesome brain tumor fundraiser.  My traveling escapades are getting more exciting with the “mAss Kicker Mobile”.  I continue to test my limits under pressure. Unfortunately, on my ride to the train station, my mom doesn’t hold up so well under those conditions!  Somehow she got lost going to the station (a trip we’ve made at least a dozen times) while I packed my bag in the back seat of the car!  I was the last one to board, minutes before the train departed.  I went up to LA last week for a brain tumor fundraiser in honor of one of my “Brain Tumor Big Bros”.  Hank was a guy I always looked up to because he always knew how to connect with people!  He was a fire fighter up in Long Beach so it automatically made him a hero to many even before his battle with the brain tumor!  He was one of the friendliest guys I’ve ever met!  I got to meet up with 2 of my other brain tumor big brothers, Kio and Giuliano.  Kio picked me up from the train station and I got to meet up with Giuliano and his family at the event.  I first met them a few years ago at a brain tumor event in LA.  That event was one of the first times I had met other guys with brain tumors that were similar to me.  Up to that point, I really didn’t fit in anywhere.  Each survivor will seek support on their own time.  You can’t force this connection.  You can periodically present them with options, but don’t force anything.  It’s annoying. I never went to any “support groups” mainly because I didn’t really fit in.  I was always the youngest person there. Talking about grandkids and gardening really wasn’t my thing. Strike one.  Every brain tumor survivor I had met in person up to that point was a woman.  I don’t recall ever being invited to a group with just guys.  Strike two. At the time, most of the young adult survivor community was only cancer.  Since my tumor wasn’t malignant, I didn’t technically have “cancer.”  Strike three.  Where did I fit in?  I had run across many young brain tumor survivors on Facebook/MySpace.  Meeting other male brain tumor survivors face-to-face made me actually realize that “Dude, I’m not alone!”  I could hangout with real people that understood what we were up against AND see how they were fighting back.  The first time I met Hank, I was welcomed with open arms and definitely felt a sense of family that I hadn’t experienced with other survivors!  At the fundraiser last week, I got to meet some other young brain tumor survivors.  Hank had the same effect on them!   The guy connected so many people.  He may not have known it, but his attitude was a huge influence on me!  I’m glad I made the trip up to Los Angeles for the fundraiser.  R.I.P. Big Bro.  Thanks for giving me the spark to make a difference in the world!

Blook Video:  song – Airport Ranger by Dave’s Son

The first 3 years of my brain tumor journey…