They Call Me Galvez

The last few weeks have been crazy.  I’m doing a lot of new things A few weeks ago, I took the train up to Los Angeles to attend a UCLA Brain Tumor Research event,  15th Anniversary 2014 “Art of the Brain” Gala.  I actually enjoy taking the train to LA because it’s relaxing and you don’t have to worry about traffic.  The seats are comfortable and it’s a relatively stress free trip!  I don’t know why people don’t take the train more often.  As someone who doesn’t like sitting in traffic, the train is a great alternative to the stress associated with traffic and the cost of gas in California!  When I got to LA I decided to go on another adventure there!  Public transportation.  I’m becoming familiar with it in San Diego, but Los Angeles is a whole different beast.  I took the bus to UCLA, which was fine with me because I had time to kill before the event!  It was like a tour of my old stomping ground when I briefly lived in Los Angeles after undergrad.  The bus passed through: Beverly Hills, Hollywood, West Hollywoood, and finally Westwood. When I finally got to the event, I met up with a friend, changed out of my t-shirt and jeans, then scooted around to expore the event venue.  I was very impressed with the turnout and amount of donors/vendors associated with the one night event.  The event showcased some photographs and paintings created by brain tumors survivors, and a had pretty cool musical performance.  There was a really unique string instrument there that stretched from the floor to the ceiling!  Very unique and pretty cool. It was the first formal Gala that I have ever attended.  There were so many people there… It was ~$300 a plate with so many event sponsors!   The highlight of the night for me was meeting more brain tumor survivors.  These people understand what it like to live with the after effects of a brain tumor.  There is an automatic kinship that is formed immediately when meeting people who “understand”.  Traumatic experiences have a tendency to bring people together.  I have noticed that the “kinship” among survivors is very powerful.  After going through so much alone, it is extremely comforting to connect with people who understand!  I felt to same bond when I want up to LA for my first brain tumor event in Hollywood.  My buddy let me crash on his couch after the event and took me to the train station the next morning.  It was quite a fun trip!

At the beginning of October, mAss Kickers Foundation hosted the annual Celebration of Life ceremony to honor the people that helped us get through everything:  our family, our friends, and our fellow survivors.  We honored those special people with toasts given by survivors.  Here are the videos from the past three years!

• 2014 Celebration of Life video recap
• 2013 Celebration of Life 
• 2012 International Tumors Suck Day

The event is literally a Celebration of Life organized and run by survivors.  We have met so many cool people at the event.  It is a potluck so everyone that attends feels invested in the celebration! We just figured that THE PEOPLE THAT WERE THERE FOR US DESERVE RECOGNITION!

Last week I had the opportunity to go the San Diego, ACS CAN RESEARCH BREAKFAST at Scripps Memorial Hospital.  I was attracted to this event because it highlights the promotion of science and research in the fight against tumors/cancer.  One of the reasons I did not get involved with the American Cancer Society was because I felt that a lot of their energy was spent on fund raising events.  I was very happy to see their commitment to research and advocacy.  I’m very attracted to the research side in the fight against ALL forms of tumors/cancer.  I do have some knowledge of the research process.  I do realize that I’m not qualified to do research myself, but I fully support the organizations and individuals that do.

Things are still keeping me busy.  I’m going to Korea next week to speak at a US Military Rehabilitation Conference then meeting up with some American cancer survivors in Singapore to do a presentation about a proactive lifestyle after a tumor/cancer diagnosis.  Stay tuned!

It’s been a while since my last post.   So much has happened!  I went back to Michigan for our Annual Paintball Benefit, my bro came back with me to SD so I got to do some touristy stuff in San Diego, and my fall traveling schedule is finally starting to solidify.

This was the 6th year we’ve had the TUMORS SUCK Paintball Benefit and it is still continuing to grow.  This year there were more kids and survivors.  Check out the pictures!  The “tween” survivor population is starting to come out for the event!   We also had a volunteer cameraman from my old high school in Ann Arbor who recorded interviews for us.  I was very happy to see more high school athletes from my old high school at the event this year.  Hopefully more will come next year to support this event.  We also had more survivors and staff attend from the University of Michigan Mott Children’s Hospital Pediatric Oncology Unit.  It was cool to see the “gruff” paintballers giving back, teaching kids how to play, and ultimately playing with the survivors.  These diseases affect everyone so it is great to see people team up to help each other.  The Tumors Suck Paintball Benefit has become a fun event for die hard paintball players to share the fun in paintball with kids and tumor/cancer survivors who want to do something different and enjoy themselves.  Each survivor was assigned a “body guard” who’s job is to protect them while completing each game scenario’s mission.  It makes it fun for both parties and builds a bond between the survivor and the “body guard!.  It is truly unique event that brings people together for a unique and fun time!  At lunch, there is always a big raffle where paintball gear and gift certificates are given away!  There is always so much given away!  The smiles on everyone’s dirty faces at the end of the day only builds the excitement for the next TUMORS SUCK Paintball Benefit.  We have plans to expand next year.

After the Paintball Benefit, my brother came back with me to San Diego.  Too funny because our collective maturity level drops whenever we are together.  We have always been very competitive.  Coaches use to pit us against each other all the time to get the best out of both of us!  I have a Connect Four set in my place. My brother found it, so naturally I was challenged.  We ended up playing a best of 7 series everyday.  All I can say is that “Big Brother” officially won in a 4 day sweep.  I swear that our collective maturity level drops to junior high level when left alone.  Smack talk, put-downs, and bodily noises fill the air whenever we get together.  I’ll admit that he has the advantage in the face-slapping department due to my ataxia but my advantage is that I wake up early.  Payback will be harsh… We did do some cool stuff tho while he was here.  We found a really good empanada place in Pacific Beach!  I hadn’t been to Pacific Beach (a college town/beach neighborhood) in a while.  So much empanada variety at Papa Luna’s!  Will definitely have to go back and try the other ones.  I didn’t even know dessert empanadas existed!  “Fat Eric”  approves.  We also went to the USS Midway museum.  We grew up watching Top Gun on the VCR during summer breaks, so we were both pretty excited to check it out!  The last time we went to a museum this happened.  I’m a geek, but put me in a museum and I turn into a HUGE dork who has to know everything!  HAHAHA!  Starting to confirm my travel schedule for the fall!  Looks like I’ll be in Austin, San Francisco, and Michigan for sure.  Should have confirmation on a couple international trips soon!  Pretty exciting stuff in the works!  Can’t wait to announce it!  Stay tuned!

So much has happened since my last post! As a child, the month of June not only meant the end of school year, but also the beginning of summer and a bunch of fun activities.  Earlier this month, I went back to Michigan for one of my best friend’s 40th birthday!  We are all evolving!  A few years ago, everyone was getting married and buying houses.  Now, kids are started to pop up and priorities are changing.  It is so crazy that we are now older than our parents were when they immigrated to the United States to start a new life!  It was so cool going back home to Michigan and not having to worry about an event or a speaking engagement. I got to see many of my friends from undergrad at the birthday party.  I also got together with some of my friends from grad school for a barbecue!   I also got to meet up with some of my mentors from grad school!  It was so great catching up with everyone and taking a short break from everything..

I returned to San Diego for our Second Kickball Tournament.   This year teams included: Local PT/PTA programs, a team of survivors and their loved ones, a team of PTs, and the defending champs!  It is really turning into a fun event!  This year, we let the family members of survivors play so a bunch of little kids made some great plays playing with their parents!  Pretty cool seeing families play together!  Things went very well.  We see a lot of potential for expansion!  It was great seeing future healthcare professional interacting with the families affected by tumors/cancer.  We are making plans to recreate this event with other PT/PTA programs in different states!

The week after the kickball tournament, I had the opportunity meet with the Founders of the Belgium Based website, Esperity.  They are early in their development, but they share with MKF a strong interest in clinical trial recruitment.  They realize that common cancers like breast or prostate cancer get the most research funding and get the most subjects recruited for research studies because of their prevalence.  If we can combine resources globally on clinical research studies for the less prevalent tumor/cancer types, this could address the need for the recruitment of rare tumor/cancer subjects.  EVERYONE BENEFITS!  Instead of looking in one region, lets search the world for eligible research subjects.  It makes sense to me.  Collaboration is key, but people need to understand the benefits of participating in clinical research.  It was great to hear their vision and add my input!  I’m still not sure how an international “IRB” would manage this, but it is an interesting concept.  We’ll definitely have to keep an eye out of them.

After our meeting, I wanted to relax, so I stopped by Lucha Libre Taco Shop.  As a kid, I was really into pro-wrestling.  I am proud to say that I was going crazy at Wrestlemania 3 at the Pontiac Silverdome when Hulk Hogan slammed Andre the Giant.  When I heard about a luchador (masked pro-wrestlers) themed taco shop in San Diego I had to check it out!  Nacho Libre was one of the silliest movies I had ever seen, but it awakened my inner-child! The 11 year-old version of myself would not have been disappointed by Lucha Libre Taco Shop.  The place was covered with luchador memoriabilia and bright colors that screamed “NOTICE ME!” Of course, the food was incredible!  Their California Burrito was rated as one the top 10 in San Diego by San Diego Surfers.  The place literally had a line out the door!  The menu did not disappoint!  If I like something, I tend to order it again.  The California Burrito has been my “Go-To” order for years.  I’m just now starting to explore San Diego Mexican food outside of my first love, the California Burrito.  I will definitely have to return and try something different…

Anyways, still have a lot on my plate… gearing up for our paintball benefit in MI in August… stay tuned!

The past few days, I tried something new.  I’ve considered myself a “patient advocate” for quite sometime time.   My purpose in pursuing a career in physical therapy was deeply rooted in the belief that I just wanted to help people.  I attribute that to all my experiences in community service growing up.  We were sometimes forced to do it, but I always had fun doing it!  Early on in Cub scouts, later through Team Sports Service projects, and later through college volunteerism I found that being active in philanthropy/ service projects satisfies an intangible need that can fill an empty space in your soul.  Although faced with numerous physical obstacles, the fire to contribute to the community has not only gotten stronger but has become more focused.  Surprisingly, this fire has been spreading to other individuals.  The past few years, I have been meeting more people with similar beliefs/values about tumors/cancer.  I honestly think that something big is brewing.  I don’t know what it is exactly yet, but the seeds are being planted for something potentially BIG!.  On Sunday, I had the opportunity to go to Washington DC to advocate with the National Brain Tumor Society to congress about 3 pressing issues in Brain Tumor Advocacy:

1. Seek support/ thank them for supporting federally mandated Oral Chemotherapies Drug Coverage by insurance for drugs like Temodar. Support Cancer Drug Pairty Act (H.R. 1801)
2. Seek support/ thank them for supporting the collection of bio-specimens in pediatric cancer patients through The Carolyn Pryce-Walker Conquer Conquer Childhood Cancer Reauthorization Act (H.R. 1553).  This would lead to more research
3. Support NIH Funding for future research. Increase National Institute of Health to $32 Billion. NCI, National Cancer Institute funding to $5.26 Billion to fund tumor/cancer related research.

We got to meet with California Senators and California House Representatives.  I wanted to sit back and observe how they did things the first couple meetings.  It was the first time formally advocating for something.  We got to meet with Legislative Assistants, a Legislative Director, and a Healthcare fellow from the offices of Sen. Barbara Boxer (D), Sen. Dianne Feinstein (D), Rep. Mark Takano (D), Rep. Susan Davis (D), and Rep. Dana Rohrabacher (R).  I was comfortable talking about statistics because I didn’t feel strong enough in my knowledge of the bills.  Each meeting was only 15-20 minutes, so the “pitch” had to be structured and rehearsed.  I realized how formal the attire was at the meetings. Definitely not the laid-back attire I’ve grown accustomed to in San Diego.

Since I started down the advocacy road, I have been focused on providing resources for patients and healthcare professionals.  I’m starting to realize the importance of educating public officials about these issues.   Advocacy is not only educating healthcare professionals and patients/loved ones, but also education of public officials so they can become powerful advocates for your cause.  It is extremely important to find powerful supporters!  I’ve been averse to politics because of all the “negative smear campaigns”.  Don’t tell me why your opponent sucks!  Tell me why I should support you!

Anyways, it was so cool meeting and hanging out with so many of my online brain tumor friends!  I really got to give props to my friend Liz for encouraging me to attend the event in DC.  She introduced me to the world of public policy.  I was so excited to hangout with Monika, David, BethAnn, Jim, Ashley, Raechal, Sarah, Patti, Ron, and Pati U. I do realize that it is essential to “tread lightly” when it comes to the nonprofit sector’s interaction with politicians.  I’m very cautious of that.  I look forward to returning to DC to do more brain tumor advocacy!  Perhaps I will return as a disability advocate to address legislative disability issues.

For now, I rest.  I have a few more things up my sleeve… hee hee hee… STAY TUNED…

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.

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…

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.

Earlier this week,  I was supposed to go up to Los Angeles for a meeting, but my train got cancelled.  It left me with a bunch of time to kill.  Exploring new areas has become my mission the past few years, but from the perspective of someone with a physical disability.  I decided to check out the San Diego Central Liberty.  Such a cool building!  I had not gone to a public library by myself since I was in high school.  In college going to the library was social time at the UgLi (The Shapiro Undergraduate Library).  I’d spend more time hanging out with my friends then I would actually studying at the library.  I couldn’t sit still in there because I have always had a very short attention span and I was always distracted by all the pretty girls… HAHAHA!

I figured out in grad school that I  need to be alone to get things done because the temptation to do something  more fun was ALWAYS very high!  I’ve forgotten that the library has so many resources! I vaguely remember going to the library as a kid and reading Curious George, Where the Wild Things Are, and Pockets For Corduroy.  I also vaguely remember eating toasted jelly sandwiches and Oreo cookies.  I recall my parents telling me “if you are loud you’ll get in trouble!”  I was always a quiet kid after that!  Most people go to Barnes and Noble to find books or other resources.   I think it is largely due to the fact that it is open later which makes stores and coffee houses more conducive to people looking for a book after work or school.   Technology is making information more accessible, so  I’m very curious to see how digital books/media will affect libraries.

Anyways, at the library, you can borrow CDs, movies, books, ebooks, and even e-readers (with a deposit)!  Pretty cool!  You don’t really appreciate things until the trivial things become difficult to attain. This trip to the library was an unexpected surprise years in the making.  I didn’t realize how much I enjoyed that place until I was immersed in it.  I spent the whole morning exploring a exciting new place!  I even ran into a buddy of mine with his kid!  I found out from him that they also have free classes there!  There are so many interesting resources there!  A genealogy section, a rare books section, San Diego History section, a computer lab, a whole section dedicated to baseball, a roof top view of downtown San Diego… so much going on there!  I’ll definitely be going back there!  The last stop on the trolley goes to the library…very accessible!  Now, I just have to find my library card…