They Call Me Galvez

I have been shifting away from blogging to using video. https://www.youtube.com/channel/UCb-4Zridp0KqFm7_XIPIsHA

I’m seriously wondering if I should get a get a new manual wheelchair. I think that I would benefit from a new chair because it would force me to be even more physically active. I discovered the Wijit lever propulsion system
a few years ago and more recently I discovered . the Nu-drive Air

I would use a regular manual chair, but I have difficulty propelling the chair with my grip/hands. My coordination is horrible. I wonder if using the Nu-drive Air will improve my coordination by strengthening the proximal muscles that control my tremors. I’m curious to hear what other rehab professionals think. I had an appointment with my PCP to get a script for a WC evaluation. I’m told this process will take anywhere from 3 to 6 months. Should make traveling easier… We will see what happens next…

I just “pressed the reset button”.  I had to take a little break from the oncology world, but I’m ready to jump back in the survivor advocacy game. This time around, I’m armed with the bitter taste of loss in my mouth. For the past 10 years, I’ve had the pleasure of meeting incredible post-treatment thrivers from around the world. Unfortunately, I have also experienced losing so many close friends to tumors/cancer.  That is why I had to take a break and try something new.  It pissed me off. I tried going back to grad school to approach the issue of post treatment thrivership from an academic angle.  I discovered that my post treatment impairments (and age) put me at a HUGE disadvantage in an academic setting with so many gifted colleagues in the program.  I thought I stuck out before, but now I felt like I was sticking out out for the wrong reasons.  I am not the same student I was in physical therapy school.  Somewhere along the line I became academically cynical. I didn’t enjoy the classes, I questioned why we had to do things, I had very little in common with my classmates, and then I became the guy in the scooter who needed help taking notes/needed extra time to take tests & quizes/ the guy you didn’t want to do group projects with.  I started feeling like a burden. My classmates on group projects didn’t trust whatever input I had. Sadly my disabilities are hard to hide. Going back to school was a challenge I needed to try because I was getting too comfortable where I was. It definitely opened my eyes to the plight of students with disabilities. I realized that many young brain tumor survivors probably deal with similar issues… making it difficult to attain higher education. It pissed me off. I’ve never felt so helpless to things out of my control, BUT I now have a greater understanding of the issues many survivors face in returning to school. Helping survivors figure out how to adapt to their impairments and become thrivers is something I can still do. Oncology thrivership has always been at the heart of mAss Kickers Foundation.  We want to empower ALL survivors and see them become leaders and powerful advocates for other survivors. 

mAss Kickers Foundation is already planning on going back to tabling at conferences and doing more presentations.  I have also realized that all survivors have a unique story that needs to be told. Our stories can benefit someone facing the same diagnosis or the challenges that come with that diagnosis. I’ve found that healthcare professional students are very receptive to hearing stories from people close in age to them. These stories resonate with students because they are typically identify with lecturers in the same social/life stages.

I’ve been in Houston for 2 years and I’m finally meeting other survivors! I didn’t realize how alone I felt without connecting to others with similar experiences.  Honestly, I was so preoccupied with academics that I ignored the fact that I was pulling away from people. Perhaps everyone feels like this at some point in higher education. I have more time now, so perhaps I’ll start blogging more frequently.

I think I may have bitten off more than I can chew.  I moved to Houston in August to go back to school in the hopes of pursuing a PhD in Public Health.  It has been quite an adventure since I’ve moved.  Just getting my stuff here was a huge ordeal!  Dealing with movers and the weather was much more expensive than I budgeted.   Hurricane Harvey flooding complicated the delivery of my things.  The move was supposed to cost me an estimated $1700, but it ended up costing $3000!  I missed the first week of classes waiting for my furniture to arrive, so I was already behind academically.  This was a very big issue because returning to school as an older student with a physical disability definitely was going to be very challenging.   The fact that my background is not in the social sciences AND the fact that the program is in “Health Promotion and BEHAVIORAL SCIENCE” definitely has made the transition more challenging.   I was prepared for the “Health Promotion” aspect of the program through my work with mAss Kickers Foundation, but not the “Behavioral Science”/ psychology aspect of the degree.  Good thing that this was caught early on.  The combination of a lengthy break from academia and a weak background in social science research led to the decision that maybe I should pursue an MPH in Behavioral Science and Health Promotion instead of struggling through a PhD program.  Will have to consult more people… The intent to pursue a degree in Public Health is still there, but maybe a PhD is not appropriate yet.  For the first time in a while, I am not able to do what I want.

The reality of the situation is frustrating, but all is not lost.  A few weeks ago, I met Lex Frieden.  He is “a chief architect of the Americans with Disabilities Act” located in Houston.  I am very excited to announce that I have the opportunity to work him next semester at the Texas Institute of Rehabilitation and Research (TIRR).  It will be an excellent opportunity to learn more about disability advocacy directly from him and apply my rehabilitation/non profit knowledge to his current work in rehabilitation research.  Most of my focus since my brain tumor diagnosis has been on oncology related issues.  I have done a few things in the disability community, so I’m very excited to learn from Dr. Frieden and get more involved in rehabilitation research.  I still am very interested in the role of physical activity/exercise in tumor/cancer survivors, but I think that physical disability and exercise/physical activity could be another factor worth studying… You can’t always get to do want you want, but you have to be resilient and be able to adapt.  Things have been challenging since I’ve been in Houston, but I’m starting to adjust…

Finding a “new norm” was something I struggled with after brain surgery.  I’ll admit that I was “broken”.  I survived major brain surgery, but lost 90% of my hobbies and professional identity!  I used to think that when you meet someone new, you are defined by “what you do.”  For me, it was merely a way to categorize people in your memory.  After surgery, I couldn’t do much of anything.  I was searching for any identity other than “handicaped person”.  I lost the career in Physical Therapy that I worked so hard to establish and I lost the very thing that defined me… sports.  I remember wanting to go back to the Physical Therapy clinic where I used to work and “shadow” one of my colleagues because I was so bored!  Part of me didn’t want to let go of the career I was just starting.  I even renewed my California PT license and CSCS certification by taking online courses.

I felt like I was broken… kinda like Humpty Dumpty.  That feeling of hopelessness finally went away when I created the Tumors Suck group on Facebook.  I met so many people that felt the same way about brain tumors.  I quickly found that people felt the same way about ALL types of cancer, which led to the creation of mAss Kickers Foundation (mKF).  I eventually recreated myself by finding new hobbies and following new interests.  I decided to focus on what I could do, not what I couldn’t do. It has been fun figuring this out AND stay tuned because I’m still figuring it out!  Through mKF, we started meeting survivors from around the world!  We went to Tokyo, Japan and Manila, Philippines in 2013.  In 2014, we went to Singapore, Singapore and spoke to students at the National University Singapore.  Last year, we went to Brussels, Belgium and met with Flemish survivors then spoke at the Institute Gilles Bordeaux. This year, we are planning on going to Cape Town, South Africa in the Fall!  We are planning on meeting South African survivors, and presenting “Post-treatment Thrivership” at different venues in South Africa. We could definitely use some help with this ambitious undertaking!  With a donation of at least $20 here, we’ll send you some Tumors Suck stickers and put you in a video!   Check out this link to see the videos from the past “How to Kick mAss” Programs.  Stay tuned for updates!

On Saturday, I went to my first CrossFit session at KDA CrossFit in Miramar.  I wanted to find out why many of my friends were so involved in it!  The camaraderie I found there was very similar to high school sports.  I was a part of some very focused high school teams that were very successful in football, wrestling, and track.  The common denominator on those teams was that everyone was on the same page and knew how each individual’s goals related to the team’s goals.  In college, I found the same similarities in vastly different organizations: Lambda Phi Epsilon: develop a sense of unity among Asian Americans and attaining full national chapter status; Filipino American Student Association:  educate young Filipino-Americans about their roots and develop a sense of pride; 58 Greene a cappella: help establish the group on campus as a legitimate performance organization and explore our personal artistry.  In Physical Therapy school, that same camaraderie was formed very early on in our first year of the program together as future young professionals.  As a physical therapist, I experienced the same type of “professional” camaraderie in continuing education courses and conferences through the professional organization, the American Physical Therapy Association.  I’ve seen hints of this same type of camaraderie in the survivor world, however it is difficult to maintain because other priorities arise once a patient starts to feel better.  Anyways, I’ve re-shifted my focus to health/well-being based on the influences of my experiences:  athletics, ethnicity, creativity, physical rehabilitation, and post-oncology-treatment “thrivership”.  This time, I’m looking to explore the benefits of physical activity/exercise for tumor/cancer patients.  It took me a while to cope with my own physical limitations and establish new goals.  Establishing “functional goals” for ADLs or mobility is great, but for me it wasn’t enough.  My interests are now on personal fitness. At the CrossFit gym, I realized that it is very time consuming for me to move from exercise to exercise due to my mobility impairments.  It requires a lot of help setting up the equipment so perhaps “one-on-one” training is more appropriate. Many of my rehab colleagues cautioned me about overuse injuries.  The coaches do a great job assessing technique, but I can see how the focus can become on the completion of a certain exercise.  I’m liking what I’m seeing in the CrossFit community, but I’m still very cognizant of my functional rehab goal for improved mobility… I still have to check out a few more gyms vs personal training, but a new challenge is coming into focus this year…

This fall was extremely packed! I got to hangout with so many cool people, but at the same time I have lost A LOT of close friends to cancer. For me, it gets harder and harder to deal with these losses because I tend to get very close to people!  I’ve talked to other leaders in cancer advocacy about this.  It supposedly gets easier to recover from the loss.  Every time we lose somebody it still hits me pretty hard!  It hasn’t gotten any easier for me.  I recently closed my personal Facebook account because Facebook is where I interact the most with people.  I think I need a break from advocacy for a little while because the loss of my friends is emotionally draining.  It’s crazy… before I got involved in advocacy, I hardly knew anyone that was sick.  Now it seems like almost everyone I meet has been affected by a tumor or cancer.  It seems like most of the stories I hear… don’t have a happy ending.  The loss of the last three friends hit me pretty hard because I had so much in common with them.   I think I just need some time away from the oncology/cancer world for a little bit to recharge and organize my thoughts/ideas…

It’s funny. I thought things would be slowing down this month since I’m not traveling, but things are actually getting busier!  I’m already starting to set stuff up for next year.  There are plans to do more traveling internationally, but we need a more consistent source of revenue to take more post-treatment “thrivers” on these trips.  The purpose of these trip is to promote a proactive life after a tumor/cancer diagnosis and dispel the international stigma that a tumor/cancer diagnosis is a death sentence.  Right now, your donations are supporting MKF activities.  In order for MKF to grow, there needs to be a more formal staff to manage everything.  I’m realizing that the type of assistance MKF needs requires hiring someone!  The direction MKF is heading is WAY out of my professional expertise!  Early on my vision for MKF needed to be established and I took on much of the work/responsibility myself.  I think this is typically called “Founder’s Syndrome“.  The problem now is finding reliable people who want to make the organization grow.  Finding people with the same passion is not difficult because people generally don’t like tumors/cancer.  But when personal responsibilities start to arise, it is hard for people to make time for the organization.  Herein lies the problem, at this point in the organization’s life span, we need to hire formal staff.  The staff at this level require a salary, but funds/donations still come in inconsistently.  Getting MKF this far, took a lot of blood, sweat, and tears. I’m realizing now that I may not be the right person to lead MKF into the next stage of organizational growth.  We’ve been stuck in the “Adolescent/Growing phase” for quite some time.  I think I might be too “emotionally invested” in MKF.  I just want to make sure MKF is left in the right hands.  I’m getting ready to add more teammates because I’m realizing that one person alone can’t handle everything!  I’m starting to think partnerships with the right organizations will be key for MKF in the future.  Please contact me through mAssKickers.org if you are interested in formally helping with MKF.  Be prepared to share a resume/references.

10 years ago today, I left the intensive care unit after major brain surgery with a new attitude. I was a pretty happy-go-lucky guy before the surgery, but I came out the ICU more focused than ever before!  I was still recovering, but I made the decision that I wasn’t going to be defeated by a brain tumor.  I just needed to find a way to fight back!  I lost my career working as a physical therapist, the majority of my hobbies, and very briefly my confidence.  Over the past 10 years I’ve built myself back up and:

One of the 1st videos…