They Call Me Galvez

This past weekend I went to my third OMG Cancer Summit for young adult survivors.  I always come back from this conference physically exhausted, but emotionally recharged.  We decided not to table this year in order to enjoy the conference and network on a more personal level with the attendees!  I love going to this event because it is a great feeling finding people who have gone through similar experiences and understand the nuances of why you have to do things… As an 8-year young brain tumor survivor turned brain tumor thriver, I still remember how isolating it was after treatment.  Meeting and hanging out with people who understand your impairments felt like finding a long lost brother or sister separated at birth!  I will never forget that feeling.  On Saturday, I attended a session on Genomics and Forging Partnerships with Cancer Centers.  On Sunday, I attended the “First Steps to Fitness” Session and a Risk Management session.  This past year I was so happy to see more brain tumor specific sessions.  Unfortunately, I came in a day late and missed 2 of my brain tumor buddies, Ashley and Catherine speaking on the brain tumor panel.  I’m so happy to see brain tumor issues being represented at a “cancer conference”.  We’ve come a long way!

Don’t get me wrong going to Vegas wasn’t all business. There were a lot of fun events planned as well! Friday night, we saw a screening of a number of extreme sports short films presented by First Descents then hung out at the Ghostbar in the hotel.  For me, I’ve learned that IT’S ALL ABOUT PACING YOURSELF AT THESE CONFERENCES!  Saturday night, a group of 11 survivors from California went to see the Jabbawookeez show, Prism, at the Luxor.  mAss Kickers Foundation was able to secure complimentary tickets for the small group!  It was really cool seeing the Jabbawookies live.  I’ve been following them since their days on MTV’s ABDC, America’s Best Dance Crew.  I always notice when Filipinos do some thing big.  PLUS they are from San Diego… HAHAHA!  After the show, we took some pictures and grabbed a bite to eat at the Luxor.  It was so cool getting to know everyone there!  After a pretty eventful day, we decided to just hangout at the hotel while everyone else partied the night away!  Totally fine by me because I got to know the NorCal guys pretty well.  You really get to know people when there isn’t loud music or an artificial aura of trying to impress someone.  Chill and shooting the breeze… more my style then the club scene lately.

Anyways, on Sat, I am taking my first trip to Washington DC to speak to our congressmen/senators about brain tumor advocacy!  Should be interesting.  Stay tuned.

Last week I had the opportunity to speak at the School of Health and Rehabilitation Sciences at Indiana University – Purdue University in Indianapolis.  I got to reconnect with the former Dean at the School of Health Professions and Studies at the University of Michigan – Flint .  He was instrumental in getting me to speak at IUPUI.  10 years ago, when I was a student at the Physical Therapy School at the University of Michigan – Flint, Dean Austin Agho was very involved with students so I had numerous opportunities to meet with him and the faculty as a student.  We’ve kept in touch since I graduated.  I was very happy to see that he is still involved with the students at IUPUI!  I also got to meet Dr.Christina Mushi-Brunt who heads the Diversity Committee at IUPUI.

As an undergrad at the University of Michigan – Ann Arbor, I was very involved in the Asian American and Filipino American Student organizations.  Growing up I always felt like an outsider, but in college I felt like I finally fit in somewhere!   When I started my recovery from brain surgery, those same feelings of isolation resurfaced.  I didn’t technically have “cancer”, so technically I wasn’t a “cancer survivor.”  I never quite fit in, but this time around I would not be passive and stay quiet.  I couldn’t go anywhere without someone coming to pick me up!  I became the awkward junior high kid who would entertain himself.  I figured out that I could connect with people similar to me online! I tried to get involved with cancer organizations, but still felt like an outsider looking in because I was “not technically a cancer survivor.”  Many organizations welcomed me with open arms, but I still felt different because my impairments made me stick out  I’ve learned to embrace my differences by taking ownership of of them.  I’m not the guy in the mobility scooter.  I’m the owner of the “mAss Kicker Mobile.”  Fortunately, over the years, I have been able to find brain tumor survivors similar to me!  I have also found survivors that felt the same way about living a PROACTIVE life post tumor/cancer treatment fighting these diseases.  We’ve created a “small town” community of post treatment thrivers.  This attitude has translated well into my professional pursuits.  I’ve been doing a lot of speaking at health profession schools and hospitals sharing my experiences.  Internationally, MKF is planning on taking survivors out to educate healthcare professionals and patients about life after a devastating tumor/cancer diagnosis.  We have some pretty cool stuff in the works!  STAY TUNED!

On Tuesday last week, I was featured on the front page of the Health section of the San Diego Union-Tribune Newspaper.  The days leading up to the publication reminded me of playing sports in high school and anxiously waiting for the write-up after a good game/match.  It’s funny, because I’m a pretty laid-back guy. I’ve never sought to be the center of attention, but now I’m learning to “embrace” it and become a proud advocate for “post-treatment thrivership”.  Thriving starts with attitude.  Attitude breeds confidence. Whether that confidence is real or an act, it creates a strong sense of UNITY between the individual fighting and his/her supporters.  I have observed it numerous times in the 8 years since my diagnosis.  I call it being a mAss Kicker.  The right attitude in the face of an intimidating obstacle can be a powerful factor in the fight against tumors/cancer.  LET’S KICK MASS TOGETHER!

I HATE stereotypes and preconceived notions. Everyday, I have to deal with these things as both a brain tumor survivor and a person with physical impairments. I thought my professional background as a Doctor of Physical Therapy would prepare me for this, but I still found things very frustrating.  I’ve experienced first hand that there is still a stigma associated with people with disabilities. Early in my recovery, I was confined to a wheel chair and had to rely on people pushing me around if I wanted to go ANYWHERE. It used to drive me CRAZY when I was in my wheelchair and people assumed that I couldn’t understand them.  People would talk directly to whom ever was pushing my wheelchair, completely ignoring me sitting right in front of them!  I became a “second-class person.”   As a “free spirit” and social creature, that drove me nuts!  I was also reduced to an “elementary school kid” since I couldn’t go anywhere unless somebody was willing to take me.  I felt like I was in an adult sized “stroller” whenever I was in the wheelchair.   I realized that once a patient in outpatient rehab goes home after their physical therapy appointment… those impairments are STILL THERE and go home with the patient as well!  It was easy ending the day as a physical therapist.  I would finish up my paperwork and leave my “work mindset” at work.  Taking my post-surgery impairments home with me from a physical therapy appointment, made me realize that rehab is a full time gig.  I couldn’t leave things on my desk to address later.  As a physical therapist, we teach independence/ modified independence for rehab patients.  To experience it first hand has definitely been an eye opening journey. 

It gets frustrating at times not being able to do the things that I used to enjoy doing.  All of my hobbies(surfing/racing) and my career as a doctor of physical therapy were taken aways from me after brain surgery.  A large part of the old me was gone.  I was left with the dilemma, “What do I do now?”   I’ve learned how to adapt to my impairments. My mind /cognition still functions as it always has, but I still get a lot of curious stares from people because I now use a mobility scooter AKA the “mAss Kicker Mobile” to get around.  I’ve learned to ignore those stares, but occasionally I still notice them.  I hope that someday people can look past the scooter and crutches I use for mobility and see the individual WITH those assistive devices.  Those things are now a part of my life, but they don’t define me.  They are hard to ignore, but they are only a part of who I am NOW!  Granted, my goals in life have changed but I’m on a new path is starting to emerge where I can still use my education/experiences to teach others about a living life after a devastating diagnosis.  I’m having A LOT OF FUN discovering new hobbies and interests, but part of me misses the activities that I used to enjoy.

My personal experiences have led me on an exciting new journey around the world! I’ve traveled all over the United States talking about my experiences on both sides of rehabilitation.  Recently, I’ve taken the message of  “post-treatment thrivership” international.  Last year mAss Kickers Foundation, the organization I started, took a group of cancer survivors to the University of Hawaii, Manoa and Ateneo de Manila University in the Philippines to speak to college students about life after a tumor/cancer diagnosis.  We also went to Tokyo and met with fellow survivors in Japan.  We’re trying to set up more international talks to spread our message of “post treatment thrivership.”  A strong global community needs to be created to efficiently fight these diseases.  A strategy is starting to form… We’ve started a “How To Kick Mass” educational program for: Healthcare students, healthcare professionals, and for cancer survivors.  The world needs to know and see that there is life after a tumor/cancer diagnosis.  I think that young adult “thrivers” (proactive survivors) are the perfect messengers for this… “All I Ever Wanted to Do” was help people.  It is the reason that I initially chose a career in physical therapy. In the past 8 years I’ve used my physical therapy background to adapt and discover new skills I can use to HELP PEOPLE!  The next few years should be exciting!  Please check out mAss Kickers Foundation a consider a donation to support the further growth of the organization and our programs.  STAY TUNED!  I COULD ALWAYS USE HELP WITH THE NEXT BIG STEP!

This past week, I took the first class for my fundraising certificate from the Lilly Family School of Philanthropy at Indiana University -Purdue University, Indianapolis.  The class was held at the San Diego Foundation, where we had our first official office cubicle.  We moved to 3rd Space earlier this year because the SD Foundation was too big of a jump for MKF as a startup organization.  Part 1/4 of the class was Tuesday-Friday from 830AM-5PM.  I was curious to see how I would hold up in a “full work day.”  I found out that my post-treatment fatigue in the afternoon is still a HUGE limiting factor.  I caffeinated myself up every afternoon, but I would physically crash from exhaustion when ever I got home!  Probably, not too healthy doing that.  I’ve found that I’m most productive in the morning, because that is when I have the most focus/energy.  In the afternoons, I feel like I’m just going through the motions.  I’m not sure if I’m retaining anything unless I write it down.  This is usually alleviated if I take my “afternoon siesta” to recharge my brain!  I’m good to go the rest of the afternoon/early evening after a good siesta!

Anyways, I picked up a lot of great information in that class!  The Fundraising School at IUPUI is a series of four classes (Principles and Techniques of Fundraising, Interpersonal Communication, Planned Gifts, and Developing Major Gifts) spread out every few months till October.  I then get an official Certificate in Fundraising Management!  The class was represented by an interesting mix of well-established organizations with huge budgets to young organizations like mAss Kickers Foundation.  I made a lot of great local connections there!  It was nice interacting with people outside of the tumor/cancer world and get new perspectives on things!  A lot of education nonprofits were there. I really enjoyed the networking aspect of the class. It was also great to interact with the Special Olympics and the physical disability organizations!  I very easily could have gotten involved with them, had I not gotten involved with brain tumor advocacy/ young adult cancer advocacy.  My experiences as a physical therapist definitely gives my a unique perspective in the advocacy world!  I see the potential for many future collaborations coming out of this class!  Ironically, the Department of Health Sciences at IUPUI is flying me out to Indianapolis next month to speak to their healthcare students about my experiences as a young physical therapist turned young neuro-rehab patient.  I’m finding that I really enjoy presenting to students because there is so much potential in students to make substantial changes in healthcare.  I will try to connect with the non-profit management school while I’m in Indianapolis at IUPUI!

There are a few more things in the works!  Stay tuned…

I’ve been doing a lot of soul searching lately.  Not because anything was wrong.  I’ve have just felt like something has been missing.  One of things that I’ve started doing is exploring my spirituality.  I feel very fortunate to be able to do all the things I’m able to do.  I figured out how to get around (mAss Kicker Mobile/ public transportation), how to fill my days (mAss Kickers Foundation), but most importantly I found new hobbies/activities (reading, writing, making videos) that I can appreciate.  I do realize that things could have been A LOT more difficult based on the location and size of my brain tumor!  I’ve been going back to catholic church for mass since the beginning of the year.  I was finding that for years I’d go to mass and go through the motions for 50 minutes without understanding the reasons.  Recently, I’ve taken a different approach finding the connections between the readings.  It made things a lot more interesting for me trying to figure out the connections between the first reading, Second reading, and the Gospel.  I will not categorize myself as a religious zealot or a robotic scientist.  However, I do realize that there needs to be a balance between science and faith.  You can’t reason faith.  Faith is not tangible or even quantifiable.  Either you have faith or you don’t.  On the other hand, you will have a hard time disproving traditional scientific laws.  I think my attitude falls safely between “religious zealot” and “scientific robot.”  I’ve had many informal conversations with friends discussing this.  Each side in the argument of religion vs science has no definitively correct answer.  I’m neutral.  I can accept the fact that the beliefs in each faction are extremely different, but I like to take pieces from both perspectives.  I see the value in both.  My mind sees the value in science, yet my heart cannot ignore the benefits of faith.  After going through so much the past few years in my personal rehabilitation/recovery, I have realized that along with my scientific/healthcare background…FAITH has help me accomplish much.  Nobody told me a definitive prognosis after major surgery and months/years of rehabilitation.  I had to turn to my faith (for many it is divinity or God) that I will get back on my feet (literally).  In my case, it was Catholicism.   It is not my place to say one religion is better than the other.  As long as “FAITH in something” is present, the soul should have some sort of  guidance ultimately leading to a common moral order. Holy wars that have been fought for generations have always focused on the differences in beliefs.  Why not focus on the similarities in those beliefs?  Are the beliefs really that extreme?  I’m looking forward to exploring other faiths.  If only there was more time in the day…

Movies are a great escape from everyday life.  It is easier for me to get lost in a good movie vs a good TV series because I don’t have the patience to wait every week for each cliff hanger.  I like reading books, but it takes me awhile to feel engaged in a good book.  Movies are convenient little vacations for my imagination.  I only have to invest a couple of hours into a good movie story vs days or weeks with a good television show or book. I’m a slow reader because I like to absorb every detail in every word/sentence a writer creates.  I really started watching movies with my brother over the summer breaks on VHS.  Before we really got involved with sports, we used to watch a lot of movies… The Rocky movies, the original Star Wars Trilogy, Top Gun, the original Karate Kid, and corny comedies like Top Secret were played everyday.  Movies tend to hold my attention because the good ones always have awesome soundtracks that enhance the story.  That lead to the creation of the Reversal Blook Soundtrack and the Awakening Blook Soundtrack.  I’ve found that early on movies were a great means of entertainment!  Luckily, I currently live really close to three movie theaters!  This week I went to the Ultra Star theaters twice on work nights to see The LEGO movie and a Kung-Fu movie through the Pacific Arts Movement, Journey to the West.

The LEGO movie appears on the surface to be a kid movie, but there were plenty of witty jokes and references that adults would actually appreciate.  There were many references to common everyday items given diabolical names with the emphasis on the wrong syllable to make them sound like elaborate evil villain weapons.  Pretty creative.  I met up with a San Diego movie club for the first time.  They go pretty much every week to catch the latest shows at “cheap movie night”.  Luckily it is only 2 trolley stations away, so I think I will be going there more frequently.

2 days later, I went back to Ultra Star Theater and saw Journey to The West, which was a featured movie of the Pacific Arts Movement.  The theater was packed!  There is definitely a community of Asian Film fans in San Diego.  I’m definitely going to be exploring the San Diego movie scene more frequently!   I’ll admit that I’ve always been a big fan of animation, science fiction, and fantasy.  If I wasn’t into sports growing up, I probably would have been considered a nerd. As a kid, my family really encouraged me to like science so I never really got to explore my creative side.  Sports was a huge part of my adolescence.  Naturally, physical therapy, a profession that combined “the science of healing and the art of caring”, was the perfect profession for me. I always liked creating stuff, so when my career was impeded by my physical disabilities, my creative side came to the forefront.  In hindsight, I was drawn to the profession of physical therapy because I could be creative in how we addressed the impairments in patients.  After assessing each patient’s impairments the physical therapists help patients create plans of care/goals to address those impairments. That was always the fun part of physical therapy for me… co-creating the plan of care with patients and working together to meet those goals!

Anyways, I watched the Academy Awards tonight so I’ll def have to catch 12 Years A Slave and Dallas Buyer’s Club.  Movies are becoming a new hobby.  I wonder how you get involved in the production of them…

Earlier this week I had the opportunity to speak at San Diego State University’s Doctor of Physical Therapy program.  I’ve spoken at different Physical Therapy programs all over the United States over the past few years, but this one felt different.  The program at SDSU is only 4 trolley stops away so I have a feeling that I will be visiting there more often.  I lectured at a neurology class for 2nd year students.  Last semester I helped out there at a neurology evaluation lab.  Last month I went up to Loma Linda University to help out with a lab.  I really enjoyed helping out at the lab because I felt like I was giving back to the profession that has served as the foundation for the MKF concept of post treatment “thrivership.”  I wanted to show the students that we don’t just “have a tumor/cancer”, we are “LIVING with a tumor/cancer.”  I think that message can resonate with many groups.  You educate the students that tumors/cancer are not always a death sentence, and that they can educate their patients that people can live productive lives after being diagnosed with these diseases.

Earlier this month I was in Las Vegas for the American Physical Therapy Association’s Combined Sections Meeting. This is is a big conference where PTs/PTAs/students have the opportunity to learn the latest news and clinical techniques in the profession.  I always enjoyed meeting other therapists and vendors at these conferences.  The past few years, I have been attending the Oncology Section programming.  I was formally introduced to the benefits of a post treatment physical rehab program for tumor/cancer patients.  After I did my radiation treatments, I tried to keep physically active because I needed to stay active to keep my sanity.  I now have “Peer-reviewed” evidence that confirms the benefits of a physically active lifestyle for general health benefits after treatment.  In my humble opinion, when done safely, under the supervision of a qualified healthcare professional, the benefits of physical activity (PA) after treatment are too great to ignore!  I have seen many survivors fall into “self-defeating ruts” after treatment.  There are so many benefits to physical activity!

I truly believe that post-treatment exercise programs need to be formed to harness the benefits of physical activity.  Dr. Steven W. Morris at St. Jude’s Pediatric Research Hospital in Memphis, Tennessee has presented numerous in-services/seminars addressing the benefits of physical activity for post-treatment cancer patients.  I was lucky enough to present his findings at a young adult survivor event in San Francisco a couple years ago!  I think young adult survivors turned “post treatment thrivers” are in a prime position to become the leaders in the promotion of a physically active lifestyle after treatment!  We are the ones with all the potential and the loudest voices.  Throughout history, revolutions are propagated by young people who realized there needed to be some sort of change.  This is a prime opportunity for Generation X and Generation Y to create our legacy!  The change in society starts on an individual level before it can catch fire.  If we truly commit to a healthier lifestyle, we should see changes in the prevalence of these diseases!  The trick is getting the under represented populations to follow suit.

Music has the magical ability to transport you to a different place, time, or situation.  A couple months ago I found a bunch of old cassette tapes in my room back in Michigan.  I was dying to listen to a few of my old mix tapes that I made in the late 80s and early 90s.  Before iTunes, Napster, and CDs… I used to record songs off the radio from the show, Rick D’s Top 40.   I even found a few of the first cassettes albums I bought!  My friend let me borrow her cassette player to figure out what songs were in my old collection of cassettes.  I was really into hair bands and pop music growing up because I had easy access to those genres through the radio.  Before my rock-n-roll phase, I remember singing Barry Manilow songs and “Tiny Bubbles” with my dad on guitar as a toddler.  I’m pretty sure we lost those “recording sessions”(at least I hope they are lost.)  When I got to junior high, I realized that those songs weren’t going to be cool with my friends… HAHAHA!  My interests shifted to the music my friends thought were cool.  The Beastie Boys, Michael Jackson, Aerosmith, Guns N’ Roses, and Def Leppard were huge influences on me.  When I got older, our family got our first video camera.  I used to tape my brother and cousins lip syncing songs… usually these lip syncs ended up me filming them jumping off stuff with cool background music.   Anyways, I borrowed my friend’s cassette player to find out what songs were on those old cassette tapes.  What I found took me back to an innocent and curious time.  I was transformed into the quiet and awkward pre-pubescent version of myself who was still trying to figure things out!  These were a few of the songs:

• Los Lobos – La Bamba
• B.B. King – Stand By Me
• White Lion – Wait
• Bon Jovi – Bad Medicine
• Counting Crows – Mr Jones
• Spin doctors – 2 Princes 
• Us3 – Cantaloop  
• PM Dawn – Set Adrift On Memory Bliss 
• Lenny Kravitz – Are You Gonna Go My Way 
• Spin Doctors – Jimmy Olsen Blues 
• Nirvana – Lithium 
• Cypress Hill – Insane In The Brain 
• Marky Mark And The Funky Bunch – Good Vibrations

Hee hee… those songs brought me back to a simpler time where my only worries were: getting good grades, winning the football game at recess, and learning as much as I could about EVERYTHING!  People always assumed I was a quiet guy, but in reality I think I was just being extra “observant” about everything.  I recently found the Goldbergs on TV.  That show cracks me up because it embodies my awkward years in the 80’s.  Of course the 90’s, 2000’s, and 2010’s were also “awkward” in their own ways, but I’ve learned to embrace the awkwardness.

Freaks and Geeks was a short-lived TV “dramady” about high schoolers from the early 80s trying to fit in.  Some big names in movies came out of that show: Judd Apatow, James Franco, Seth Rogan, and Jason Segel are a few.  Although it only lasted one season, it is definitely one of my favorite shows because I could relate to the coming of age “awkwardness” of it!

“Awkwardness” in new situations make for some great stories!  ;P  STAY TUNED because I’m still getting into a lot of NEW awkward situations as a “Kick mAss” brain tumor thriver… These songs from my past reminded me that I can get through any situation no matter how uncomfortable it is.  The old cassettes from my “wonder years” took me back to my first round of awkward years.  Combining music with an experience always enhances a memory.

Thoughts from the train…

Well, the train broke down AGAIN!  I’m stuck between San Diego and Oceanside probably until 1AM.  Other than this hiccup, I’ve had a great start of the week!  On Monday, went up to Loma Linda in San Bernadino county.  I had never been up there before, so I was excited to explore a new area! San Bernadino is east of LA, located close to “the valley.”  I was going to give a talk at the Loma Linda Physical Therapy school and help out with 2 neurology lab sessions (basically, I was going to be a “Guinea Pig” for a bunch of 2^nd year Doctor of Physical Therapy students to practice on.) My main duties in lab were to give them feedback on their technique and teach them some tips on dealing with patients.

* YIKES!  OK, THE LIGHTS JUST WENT OUT ON THE TRAIN…. I’M SITTING ALL BY MYSELF IN COMPLETE DARKNESS IN THE CABOOSE OF A STRANDED TRAIN IN THE MIDDLE OF NOWHERE!  THIS IS THE PREMIS FOR A HORROR MOVIE! At least I have a window seat… actually a bunch of window seats!  I’m not claustrophobic cause I can see the sky!

Was kinda funny because I remember the whole student mindset.  In grad school, we had to learn how to do “critical thinking.”  Sometimes there is not clearcut right/wrong answer. We had to choose “the most correct” answer.  Determining the “more correct answer” drove me nuts!  Each question had something “correct” in it, but there was always one little detail that made it incorrect!  I had friends in school argue every little point of each question they answered incorrectly to squeeze every point on their quest for the perfect score.  That was definitely not me. I figured that ultimately, I’m not going to waste my energy arguing minute details if ultimately I understood the value of the question. Anyways, I got to tell my personal story as a young physical therapist who got the rug pulled out from underneath him and had to recreate himself. I usually talk about helping patients find their own path.  In the lab session, I got to meet the students and challenge them face-to-face. It was kinda cool seeing the “light click on” when I’d give them feedback on their techniques.  The fact that I actually taught someone something that they can use to help someone else was a pretty cool feeling!   It was similar to the feeling I first got when I taught a patient with a spinal cord injury how to successfully transfer from his wheel chair to the mat table independently!  I remember thinking “Someone will actually be applying what I taught them! COOL!” This is what drew me to the Physical Therapy profession in the first place!

*Lights Back on now!  The last trip I scheduled to LA got canceled because someone decided to literally lay down on the track!  Yikes!  Anyways, I’m doing a lot more speaking at PT programs.  I think I’ll be helping out at labs more often now.  I find them more fun because there is more interaction.  Seeing the light “click on” was such a cool feeling!  Plus I enjoy messing with students… hee hee hee!  There are no “nervous testing hands” because I’m not grading them.  I’m really looking forward to doing another lecture and lab at San Diego State University this semester!