They Call Me Galvez

Last weekend I went to SeaWorld again.  This time was different.  Usually when I go with my friends, we stop at the Anheuser-Busch Building for free samples then I try to impress them with my “short term knowledge” of aquatic life. They are always impressed with my knowledge of orcas, penguins, and flamingos.  The past couple times I have gone, I have gone with my friends and their kids.  Still really fun, but in a different way.  I went to places I’ve never been:  The Sesame Street Bay of Play and the show, Blue Horizons.  In the Bay of Play, so many kids were running around, jumping off stuff, screaming… pure energy.  There were rides there for kids, Oscar’s Rockin’ Eel, Elmo’s Flying Fish, etc.  I bet hyperactive kids would like to spend the whole afternoon there. I know I would have!   Blue Horizons was not what I expected.  Lots of acrobats.  Personally, I’m more into seeing the animals do tricks.  I’m still amazed at what they can do, but the animals were always the big draw.  The pure size speed and strengths of orcas, makes them the top predators.  The fact that they can be trained fascinates me.  These things are killers.  One of my favorite attractions is the Shark Encounter.  These things are “primitive” predators that have been around for millions of years.  Dude, they are so efficient that they didn’t need to evolve much!  Animals that scare me fascinate me…  hahaha!

I did take my mobility scooter (the mAss Kicker Mobile) with me to SeaWorld.  I have fun riding it with kids.  They crack me up!  They like playing with the horn.  We always turn heads (or annoy people) because we are having too much fun!  When I was in the wheelchair I felt self-conscious having someone push me in the wheelchair because I couldn’t control where I was going and I always felt like a burden to people pushing the wheelchair.  I’m curious by nature and I’m always exploring my surrounding so I never liked feeling bottled up and displayed in a wheelchair.  I guess you can say with the “mAss Kicker Mobile” I can SEA-THE-WORLD!  whah-whah-whah… you are now allowed to punch me in the face!

Let me first state for the record, I hate reality TV!  It is drama that you can’t help but watch and can easily get sucked into it.  For me, watching a great sports event is like an addiction.  Then it dawned on me.  I’m a hypocrite!  SPORTS was reality TV long before the Real World ever aired! Drama, emotion, competition, and suspense. All the elements for entertainment are there. I read this article by Rick Reilly about why he writes about sports.  It got me thinking…  A good game or match always has a good storyline. I love watching “Rivalry” games with teams that have despised each other for decades:  Michigan-Ohio State, Duke-North Carolina, Red Socks-Yankees, Texas-Oklahoma, the list goes on and on.  The drama of the actual game is enhanced by the storylines: a player with a personal purpose; emotion of both sides fighting to win; the suspense of each play; the big plays; the pressure to make plays… In my family, sports is the glue that holds together the lines of communications between the men at most family gatherings, whether it is golf, football teams, or basketball teams it’s always a good ice breaker or conversation filler.  The World Cup is a new ingredient in my Love Potion for sports.  I don’t understand it completely, but after seeing the pride in each country… I was hooked!  I feel the same way about watching the Olympics.

Sports is what attracted me to physical therapy.  I could get paid for doing something I love?  Awesome!  I have taken an athlete’s approach to rehab after my brain surgery.  I got to thinking sports was a way for me to heal.  I view going to therapy sessions like going to practice.  For me, I enjoyed going to practice… For me, practice was always the time to fine-tune everything.  I still think that it is the work you put in outside of official practice times that will help you excel.  The same with therapy… you won’t get better just going to therapy appointments.  It’s the work you do on your own that separates starters from the bench players.  The same applies to rehab… doing the right exercises on your own will make recovery more efficient.  Putting that extra work in is getting harder for me as my schedule get busier and busier.  Last weekend, I got to visit an old friend of mine in LA.  He’s got a cute little two year old girl who likes to sit on me when we watch TV. I’m like her personal chair. But WOW!  Culture shock being around kids!  I like it, but it is very different from what I’m used to. I give props to my buddy because how do you appease a grumpy two year-old?  Reason doesn’t work.  Watching my friend throw out “dad-isms” when his daughter was naughty had me doing double-takes at the buddy who used to challenge me with Canadian beers in school.  How do you not laugh at kids when they do something naughty but funny?  I guess we all have to grow up sometime. For now, I’ll be content being “Silly Uncle Eric” entertaining the kids…

Thanks to everyone I’ve met in the past few years…  check out this book video!

I think I’m gonna end up breaking my mobility scooter… just a hunch…  I don’t think it was built to go over speed bumps. It seems like it stalls every time I hit a bump. I may need to tone it down a little more… the simple act of crossing the street is always an adventure… maneuvering to push the crosswalk button, lining up to hit the curb at the correct angle, making sure I’m aware of traffic that is turning, praying I don’t stall in the middle of a busy street… sheesh… stuff that was routine is now a concentrated effort! Maybe I just need to get out more often… I’m really “jumpy” or really sensitive to everything… this must be what newly paroled prisoners must feel like… sensory overload!

Anyways, I love being able to go out whenever I want, but it seems like there are less people to hang out with… the people I used to hangout with 5 years ago are still around, but they all have real responsibilities now. I can get out more, but it’s much harder to find people to hangout with. This was going to happen regardless of surgery, but it’s all hitting me at once. I actually went to the movies for the first time by myself and it was great being on my own! It was a little weird, but I could get used to it. I was not embarrassed at all being by myself at the movies. Gone are the days of calling someone up on the same day to see if they want to do something. Everything requires planning in advance. This is yet another thing I gotta adjust to… re-integrating myself socially is a whole different type of rehab…  it’s something I’ve been neglecting, but I’m more aware of it now. My friends have been great thus far, but I feel like it’s time to take the initiative and start doing things alone… people realize this on their own… health care professionals can only provide them with resources… you can’t force somebody to re-integrate themselves. I can definitely see where patients need help figuring stuff out, but it is ultimately up to a patient to know when they are ready. I am amazed at how much the little things in life were taken for granted.  Sadly, sometimes you don’t realize something had been missing, till you find it again. I’m talking it all in, but damn there is still a lot of of things to figure out!  Being out and about has made me more aware of things… after identifying and isolating impairments, it is just a matter of addressing those impairments…

Had such a fun weekend. I took the train up to LA  again but this time I used the crutches and a mobility scooter. That little scooter has opened up the world for me. I can finally keep up with my friends when we go out. I don’t feel like I’m holding everyone up anymore. Sure, I can’t go everywhere, but I don’t feel like burden to my friends when I’m out and about. I do get some weird looks from people though. I think people are used to seeing older people in mobility scooters, so when they see me they probably think I’m screwing around. (OK, maybe I’ll stop chasing pidgins and trying to run them over!) Actually, I really don’t care what people think.  So if people stare, they stare… I not gonna waste energy worrying about what people think of me
I met up with one of my friends from college and we went sight seeing in LA. Thursday we went to the Dresden restaurant from the movie Swingers, then went to Griffith Observatory. Griffith Observatory is one of my favorite places in LA.  It satisfies the science geek in me while eliciting my inner Rico Suave. (I say this because this is where Kelly and Dillon had their first kiss on 90210… don’t ask why I know that.)  On Friday we met up with another friend in Redondo Beach and hung out in Hollywood. I got to take the scooter out on the famous Hollywood Walk of Fame! In the Hollywood and Highland Mall, I even let my friends take turns riding the scooter… So funny!  When I get together with some of my friends you can bet we are up to no good… I called them my “pit crew” because they got really quick disassembling the scooter to transfer it in/out of the car. My friend tricked us into going to a restaurant that served insects as an appetizer. We ended up eating crickets, but I passed on the scorpion. Crunchy with very little flavor.  Later that night we met up with some friends at a bar in Santa Monica. Saturday we toured the Redondo Beach Pier. My friends walked, I rocked my scooter. Definitely pushed the limits on the scooter. Found out it doesn’t run well on hills, bumpy ground, or grass. Oh well, at least I can get around faster now! Been to the bar twice already on my own to watch basketball! I’m doing my own “experiments” with ETOH and walking/ scooter driving.  No seriously, I’m looking at the effect of ETOH on ataxia.  Results are inconclusive so far because functionally I’m safe, but I haven’t found any quantitative peer reviewed measures for ataxia yet.  “It’s all in the name of science”  I gotta try going to a movie next. Anyways, at the wedding I had 3 glasses of wine and a beer and was successful walking with the crutches with no falls…”It’s all in the name of science”… HAHAHA!  A “whole new world” is starting to open up!  I’m getting much more comfortable with the crutches… I still think walking then running is not too far away but for now the “scoot-scoot” will have to be a means for me to get around for long distances most efficiently.

Wow!  Things are already starting to pick up!  I am putting the finishing touches on my Fall schedule.  I’m going to a MD Anderson Conference in Houston to speak on a patient panel, rehab grand rounds at RUSH hospital in Chicago, Texas again for the LiveSTRONG Young Adult Alliance Conference, and hopefully something at University of Michigan Hospital.

I’m getting more comfortable with the crutches, but I am nowhere near fast enough to walk across a busy intersection.  I know in time I will get faster, but I’m faced with the dilemma of speed for community mobility.  I will continue to work on my community mobility speed, but I am still stuck with the fact that I cannot go out by myself.  I think I have found a way to address that… a mobility scooter.  You know, those scooters you see older people riding.  Unfortunately, insurance won’t cover it because I am independent in the home.  I need something that will make me independent in the community.  Crutches or a walker won’t cut it for me going out and about.  A mobility scooter seems like a good solution because walking with the crutches or a walker requires a lot of energy.  By the time I get somewhere, I am pooped!  I understand why insurance only pay for medically necessary equipment in order to establish independence at home, but jeez, in many cases equipment is necessary to establish independence in the community.  I’m very lucky to have a great network of family and friends with mobility, but a scooter will let me go where I want to go without someone having to stand close by if I lose my balance.  As a PT, I have seen how some patients become dependent on the scooter for all mobility.  I promised myself not to fall into that trap.  I got my hands on a scooter and went out by myself in public for the first time in over 4 years!  I live very close to a shopping mall.  I never used to go  to the mall before, but I’m very confident I’ll be doing that more often!  Gotta try it at night one of these days… I’ll still work my butt of trying to walk and run, but for now the “scoot-scoot” will have to do.  Eric Galvez, call-sign “mAssKicker1″.  I’ll be calling San Diego mall booths requesting permission for “flybys”… HAHAHA!

It’s been a while since I’ve updated the blog.  In the past month I have gone to Philadelphia and New York, put the finishing touches on the final edition of Reversal, been interviewed in a few articles, started creating new items for the mAss Kickers Store, started a new Tumors Suck video, started using crutches in lieu of my walker (I’m still slow with them… give me time to get used to them), and started planning the next phase of mAss Kickers Foundation… Driving has been put on the back burner for now, but I’m still waiting for the “water to boil” before I pay more serious attention to it.

I am very excited to get on the crutches!  I feel like walking with one crutch, then walking without a crutch, and then running are the next big milestones.  I really wanted to use the cane, but I was stubborn and forced myself to use it.  Using the crutches makes me feel much more confident and secure.  HOPE just reminded me that it is still there!    I’ve been getting so caught up in what I’m doing with the book and mKF, that I’ve lost track of what I need to do for myself.  I gotta be selfish and be more consistent in my own recovery!  The fact that it took so long to get on crutches has helped me realize that I needed to find HOPE for myself.  Well, I think I’ve found it again!  I wanted too much too fast… baby steps… baby steps… literally…

This song by The Clash has been in my head the past week. Reminded me of this funny video. The Carlsbad 5000 is a race that has a special place in my heart.  It is one of the largest 5K races in the US and consistently draws elite runners because it is a flat/fast course. In fact many world records have been set there! In 2005, at the 20th Anniversary Race I set my personal record for a 5K and ran a scorching 20:47.  I earned my first long distance medal there for finishing in the top 250 out of ~1000 people in my age group (20-29.)  I’ve always been a sprinter.  I was the little guy who used his quickness in all competition.  I never thought I would like distance/endurance racing.  After the race in 2005, I remember thinking, “Hey, That was kinda cool.  I can only get better.”  Months later I was diagnosed with a brain tumor, which prevented me from enjoying most of the athletic hobbies that used to define me.  I am very lucky to be alive and am now learning new hobbies, but I still yearn for the physical activities I used to enjoy.

Three years ago, I returned to the Carlsbad 5000 with the mission to simply finish the race.  It took me almost three hours with the help of my brother and friends to walk the 5 kilometers (or 3.1 miles).  Two years ago, I returned to walk again with the help of my friends in honor of an online friend lost to brain cancer.  We finished the race in a little over two hours.  Last year, I was out of town for the race.  This year was the 25th Anniversary race.  I wanted to walk for all the brain tumor patients and young adult cancer survivors I’ve met in the past 4 years.  There was no way I was going to miss this race.  A few of my friends agreed to walk with me this year!  I created a team, with the help of the Challenge Center, an awesome nonprofit organization that provides skilled physical therapy and fitness to patients with neurological deficits. They will help me in my quest to return to running.  We decided to start our walk with the Women’s Masters Race early in the morning to avoid the crowds.  This year I finished the walk in 1 hour and 25 minutes.  We shaved off close to 45 minutes off my time.  Today has given me hope.  It made me even more hungry to return to running because I know there is still room for improvement!  Every year I have improved.  I just need to figure out how to improve my balance reactions.  Things are starting to come in focus now!  It’s only a matter of time before I figure out how to walk and run again.  I’m confident the Challenge Center will help formulate a plan.  My goal is by the 30th Anniversary Carlsbad 5000 I will jog it.

Ah… something has got me really curious… in PT school, my student research project was on the effects of moderate intensity exercise (walking program) on women undergoing radiation therapy for breast cancer. hmmmm… we looked specifically at white blood cell counts and determined that they were not negatively affected. Other blood tests and quality of life tests were addressed in other studies. Granted, it was a small sample size, but it does mean that potentially the white blood cell counts for women undergoing radiation therapy are not negatively affected and may safely reap the benefits of moderate intensity exercise. I’m just now getting caught up in the exercise and cancer literature. I am realizing that everyone is looking for conclusive evidence-based data to create protocols for any actions or positions on specific issues. The reality is that in brain tumor or cancer research, much of data is conflicting, have holes in the project structure, or it simply does not exist.  There are many smaller pilot studies, but it is very rare to find larger studies (randomized controlled studies) where definitive positions can be concluded.   Sadly, part of me thinks that there is no real incentive to fund research because many organizations or individuals have too much to lose if, God-Forbid, a “Cure” is found!  Because of this, I am pessimistically optimistic about finding a “Cure” anytime soon.  The science/resources are there, but the funding isn’t.  It seems like we have our feet on both the gas pedal (science) and the brakes (lack of funding) limiting progress in the war on tumors/cancer.  I’d like to see larger studies not funded by big companies that have a stake in the results.  The problem is… where to turn to for research funding?  When looking at research, I always try to find out who is funding it to see if there is any bias to the results.  Research is the KEY to progress in the war on tumors/cancer.  However, I think a different strategy needs to be implemented.   We should promote a more comprehensive strategy not just chasing the “Cure”.  I think there needs to be a more focused approach to attacking tumors and cancer, “the K.U.R.” (Knowledge, Unity, Research).  To combat these horrible diseases we need to: promote knowledge (preventative education and patient education); promote unity (build up support for fight against tumors and cancer); and finally support research that leads to:  more efficient diagnosis, efficient treatment, improved mortality rates, improved quality of life for patients, and diagnosis-specific symptom management.  We should not lose sight of “the Cure”.  “The Cure” is thrown around so nonchalantly. For years we were chasing a vague and complicated goal.  It is now time to fine tune the focus of “research” where we will be able to see measurable results.

Fatigue is the one of the biggest impairments I’ve had to deal with since my surgery.  I still don’t quite understand post treatment fatigue, but I have my theories.  I had surgery to remove a golfball sized brain tumor four years ago.  I had radiation therapy after surgery, but afterward I was left with severe coordination and balance impairments.  I did not have chemo or any drugs for treatment of the tumor.  My post surgical impairments are ALL PHYSICAL: ataxia, tremor, and balance impairments.  It requires a lot of energy for mobility, which might explain why I have fatigue.  I have been trying to eat healthier and get plenty of rest (which is hard to do with all the activities/events I have planned).  Since I do not completely understand the chemistry associated with post-treatment fatigue, I think I may be using more energy than the average person with mobility: sitting up, walking, standing, etc.  Sadly, I still require a mid-afternoon nap to function in the evening.  This got me thinking…What is the best source to supply energy?  A proper diet.  What you eat is your fuel.   Instead of fueling myself on cheeseburgers and pizza, I am trying to fuel myself with “good” food.  I’m eating more fruits/veggies and trying to cook more frequently, but I haven’t completely given up junk food.  I’m not dieting, “I’m eating healthier.” I’m thinking I’ll focus on what I eat, not what I shouldn’t eat!  I’M NOT GOING ON A DIET!