They Call Me Galvez

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!

I went to the International Comic Con in San Diego this weekend for the third time.  In 2009 and 2010, I actually got tickets to go to the event at the San Diego Convention Center!  This year, I learned about the FREE off site events open to the public.  The last few years, I’ve been out of town, but this year there was no way I was going to miss it.  On day 1, I went to the Petco Park Interactive Zone. It was packed!  I got free Pizza Hut pizza at the Teenage Mutant Ninja Turtles booth and picked up some cool swag from the discovery channel, the BoxTrolls movie, the Amazon Geek Boutique, Alienware, Sin City, and other vendors! Check out the Day 1 pictures. On Day 2, I stopped by the interactive zone again to get a poster signed by Jessica Alba, Rosario Dawson, Josh Grodin, and the director of Sin City, Robert Rodriguez – I was hoping to go to the Game of Thrones interactive experience, but the line wrapped around a city block!  I’m a big fan of the show, but I was not going to wait 4 hours in a line by myself!  Instead, I decided to do some people watching down town.  I was not disappointed.  Check out Day 2 pictures. All the “characters” come out at Comic Con!  Comic-Con weekend is like Halloween, where people get dressed up and parade around as their favorite pop culture character but over a span 3 days.  There are a lot of really impressive costumes there! Some people go all out with elaborate costumes.  In downtown, San Diego bars and clubs would throw pop culture themed parties.  Pretty cool, but I’ve out grown the party scene.

As a latch-key kid from the 80s, I was really into watching movies on the VCR every day over summer vacation.  The original Star Wars trilogy, Rocky movies, Indiana Jones series, Star Trek movies, Schwarzenegger movies (Conan the Barbarian/Commando/Predator), etc were always on the TV.  Our dad used to bring home movie rentals from Meijer for my brother and I every week over the summer.  We watched A TON of movies every summer but going to the theater was always the funnest!  I always loved going to the movies.  It was so funny watching my dad cheer in the theater at the end of Karate Kid and at the end of Return of the Jedi when the Millennium Falcon escapes the exploding Death Star.  HAHAHA!  Pop culture has always been an interest of mine so Comic Con was an added bonus of moving to San Diego!  Comic Con is essentially a “pop culture” convention which evolved from a comic book convention.   I remember going to my first comic book convention in Michigan in the mid 90s.  I loaded up on classic Transformers and The Amazing Spiderman comics.  As a kid, I remember my parents let me get a comic book mail subscription I’ve always been drawn to stories where the outcasts were the heroes.  Hey, it got me interested in reading!  In Spideman, Peter Parker was a social out-cast/nerd, the Autobots were never fully accepted by humans because they were aliens.  I really related to both stories because  I’ve always felt like an outsider.  I realize now that EVERYONE feels like an outsider at some point!

Growing up in Midwest there were few people similar to me so I always felt like I stuck out.  I was always one of the smallest kids at school (so I got picked on a lot), one of the few Filipino/APIA (Asian Pacific Islander Americans) kids in my school, and I was the shy/quiet one because I always felt different.  I was good at sports so I never felt lonely and I always had friends with similar interests.  I was constantly trying to fit in.  I am still close with many of my friends from elementary school and high school.  It was through sports that I made most of my friends. Athletics defined me growing up and continued through college, grad school, and the early portion of my professional years.  In college I finally discovered people ethnically similar to me.  It helped me to come out of my shell and feel comfortable in my own skin.  Sticking out was always “social suicide” as an adolescent!  After college, I learned that how you react to standing out/being different can determine success.  I learned that essentially, “Everyone is unique.”  You can try to hide it or learn to embrace it.  I’m proud to be different.  The tough part is figuring out how to use your “geekiness/uniqueness” to your advantage.  Geekiness is engrained in me.  I have become comfortable with it!  Most of my insecurities were removed along with my brain tumor!

This week, I’m heading to Michigan for our Annual Paintball Benefit!  Always a fun time!  Looking forward to reconnecting with old friends!  Stay tuned!

I found this…  Was weird because I treated many of his patients and I think one recognized me in the waiting room!  Every patient should have a list like this whenever visiting their doctor!  Make sure your concerns are addressed!  Doctors are very busy so there may not be time for small talk!  PRINT OUT 2 COPIES:  A COPY FOR YOURSELF AND A COPY FOR THE DOCTOR TO KEEP IN YOUR FILE.  MAKE SURE THE DOCTOR KNOWS YOUR CONCERNS!

I.  Current Symptoms (it’s in your chart but make sure they know!) 

WHEN:

All the time:  left sided facial numbness, left sided tongue numbness, loss of appetite, malaise, clumsiness can’t walk a straight line

Occasional:  Nausea and vomiting, lightheadedness (when working out), headaches (with increasing intra-abdominal pressure)

ACTIVITIES THAT BRING ON SYMPTOMS: 

With quick movements: headaches (also when changing positions/levels), dizziness

II.  Questions

1. What is the prognosis? I’m very concerned about the cranial nerves, with the basic body functions and the blood supply to the cerebrum, cerebellum, and brain stem.
2. What specific procedures can be done to take this thing out?  Will the entire thing be able to be removed?  How much damage will be done to the cranial nerves/vascular tissue during the procedure?
3. How common is this tumor?  How did it grow so big?  What was the blood supply for the tumor/what “fed it”?  How long do you think it’s been there?
4. I’ve been having dizziness with exertion, Should I worry about the carotids or any other arteries that supply the brainstem or cerebrum.  The last 2 really bad dizzy spells I had came with running ~5-6 miles.  Are there any vascular tissues affected with the tumor location?   I also notice dizziness/lightheadedness when working out.
5. Was the cerebellum (or vestibular nuclei in the pons) also affected? My coordination has been off for a few months.
6. How long is the rehab?  What kind of lingering effects should I expect? Timelines?
7. Once it is out, is there a chance for relapse?  Is there anything I can do to prevent it from happening again? What caused the tumor/where did it come from?
8. Am I now at risk for new tumors to pop up?
9. When can a procedure be scheduled?  I really need my parents from Michigan to be here for me.
10. When can I return to surfing, triathlons, work?  Is there anything I should avoid post-op?

Earlier this week, a good friend from PT school called me out!  It was exactly what I needed to hear. The past few months I have been extremely busy doing MKF stuff that I’ve been neglecting my own personal rehab.  It totally put my priorities in perspective.  Somehow, he talked me into catching a movie after dinner.  I did not anticipate this because I used only my crutches going to the restaurant.  This would mean having to use the crutches to go to the theater in the mall!  I hadn’t tried this before because after prolonged sitting my legs stiffen up and walking becomes difficult.  After a few taunts, I decided to give it a shot.  This was going to be interesting because there were time constraints with walking to the theater (we had 20 minutes to catch the beginning of the movie.)  What I didn’t realize was that there were ~20 minutes of movie previews before the movie started.  I had plenty of time to use the crutches to walk to the theater in the mall, walk to the bathroom in the theater, and walk back to our seats before the movie started!  I was pleasantly surprised!

I had to test this out again.  Last night I went to a Challenged Athletes Foundation fundraiser in Ocean Beach sponsored by students in the San Diego State University Doctor of Physical Therapy Program.  I really wanted to go because:

1. I worked with many of these students in a neuro lab last semester so I wanted to congratulate them and wish them luck entering their clinical affiliations
2. I got to know a few of them at the Charity Kickball Tournament
3. I wanted to meet some people from the Challenged Athletes Foundation

I decided to try attending the event with only the crutches because I was surprised at how well I maneuvered after prolonged sitting at the movies.  I took an uber car down to Ocean Beach.  I hadn’t been there in years by myself.  I do recall going to a couple bars out there when I first moved to San Diego as a young single healthcare professional.  It was a strange feeling going back there knowing that the last time I was out there the circumstances were completely different!  This event was for the students to celebrate, so I didn’t want to intrude on their celebration for too long. My old friend Rosalia is now a professor at SDSU so luckily she was able to give me a ride home early.  Hee hee hee… wow, how things change.

I’ve def got a new FIRE to push myself, but instead of just randomly trying things that I want to do, planning and preparation will be the key to success!  The 2014 Paintball Event is coming up and Comic Con is next week so some exciting stuff is coming up!  Stay tuned!

Thanks for including me Emily and Selma!  This in an old interview!

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 battle against myself is waged every night.  I’m noticing lately that I’m more conscious about what I’m eating and drinking.  After I found out how much sugar is in coke, pepsi, and other soft drinks I stopped drinking it!  I’m also eating healthier, but occasionally I’ll have my slip-ups when my alter ego, “Fat Eric”, is the decision maker.  I’ll always have a soft spot for fast food.  Growing up, a trip to McDonalds every Sunday for a Happy Meal was a reward for being well behaved in Church.  It was probably the toys that drew me to the Happy Meals.  In college, the easy access combined with a small budget, frequently led me to the Golden Arches.   Actually, I would pool up McDonalds Monopoly pieces with my roommates in the hopes of winning a million dollars!  My sweet tooth is my biggest guilty pleasure.  I’m definitely more aware now of what I’m consuming.  I’ve read books about the “Raw Diet” and done a lot of research online about how diet plays a large role in a healthy lifestyle.   I’ve been trying to make a conscious effort to eat healthier.  I’ve been eating healthier out of convenience.   My current reasoning for eating healthier is simple:  “Salads are easy to cook.”  I’m definitely more conscious of what I’m consuming.

While I’m become more aware of the importance of nutrition, exercise/ physical activity has never been an issue for me.  However, practicing “functional” activities is tough because it gets repetitive and boring.  I have noticed that I’ve been gravitating away from the balance and gait training exercises because it not a cardiovascular activity that generates Delayed Onset Muscle Soreness (DOMS) or sweat.  As former physical therapist, I understand the importance of functional goal setting, but with so many accessibility resources /alternative means of accomplishing things, I think  that I have managed to adapt to my impairments.  This is great, but I’m not content with adaptation.  I want to continue to address the impairments.  I do realize the I’m at risk for disappointment if my progress has plataeu’d, but part of me still wants to believe the potential to walk or even run is still there.  I just have to return to rehabbing. Time is precious, but I do realize that things are not going magically improve by them unless they are addressed.  Good intensions mean nothing unless an action plan is executed.  There is so much I want to accomplish, I just wish I had the energy to do what I want!

Memorial Day Weekend used to have a completely different purpose/meaning for me.  In college, I used to go to my fraternity’s national convention Memorial weekend.  Of course we met to discuss issues of expansion and business, but it was also like a “mini Spring Break.”  The convention always coincided with a sorority’s national convention so there were no shortages of mixers and social events that weekend!  After college, my friends kept the tradition of meeting up Memorial Day weekend alive.  We use to make a concerted effort to meet up and stay in touch.  Many of my friends decided to get married Memorial Weekend thus keeping the Memorial Weekend tradition alive.  We have so many crazy stories from those weekends!  Now that many of my friends are now starting families and becoming respected professionals, the time for reunions/get together are becoming rare.   I’ve also started to appreciate the true meaning of Memorial day: Honor the men and women who gave their lives for the freedoms we enjoy in this country!  Being in San Diego with so many military personnel has made me appreciate the job that they do to defend our way of life.  To actually meet people, in the Military is very humbling.  Sacrificing time away from their family and dedicating their life for a cause larger than themselves is something I truly admire.  When I was younger, I didn’t appreciate the sacrifices these people make to serve their country.  I’ve gotten to meet so many members of the Military and I’ve grown to respect all of them.  Many of my own personal beliefs are very similar to their values.  I have so much respect for their code!   Let’s not forget the reason WHY we have this holiday!  Thank you to all that serve or who have served!

This past week, I had the opportunity to speak at the Physical Therapy Assistant program at Concorde College in San Diego.  I have been doing a lot with Healthcare Education programs recently.  Last month I did a google hangout with a Physical Therapy Class at The University of New England.   I really enjoy speaking to students because I feel like there is so much potential in them to do something great!  I have had great mentors growing up and transitioning to the next phases of my life.  In high school, it was my sports coaches. In college, it was the student organization faculty advisors and my older friends. In grad school, it was the faculty and my clinical instructors.  As a young professional, I was assigned a mentor in the clinic.  In the nonprofit sector for the past few years, I’ve had the pleasure of meeting so many individuals who offer me priceless advice.  I’ve realized that no one person accomplishes things completely alone.  Everyone needs guidance.  This is probably why I’m so drawn to educating people about how to “thrive” after a tumor/cancer diagnosis!  I’m realizing that I’m really going to have to leap out of my comfort zone to truly raise awareness for “post treatment thrivership” to go beyond “survivorship.”  To me, being a “survivor” is something every individual diagnosed with a tumor/cancer looks to become.  Weathering the emotional and physical storm of a tumor or cancer diagnosis and becoming a “survivor” is a very great accomplishment, but that experience can ignite a fire in an individual to advocate against these diseases through research, psychosocial support, patient advocacy, patient education, political lobbying, etc.  The next step after becoming a survivor is becoming a “thriver.”  To become a “thriver”, a “survivor” begins to stand up against against these diseases and actively promotes the fight to conquer these diseases.  Becoming an advocate for post-treatment “thrivership” is no easy task.   It takes the right attitude and the genuine ability to promote the fight against tumors/cancer based on personal experience.

This weekend, I stepped out of my comfort zone again. I went to my first charity fashion show to see if a similar event would be appropriate for mAss Kickers Foundation.  It was a very interesting event.  Fashion is something I know very little about.  I was hoping to meet people from the beneficiary, International Children’s Cancer Foundation. They were hard to identify.  I really appreciated all the hard work by Ella PR that went into creating this unique charity event. I was very impressed with the number of sponsors, the turnout, and the accessibility of the venue.  I honestly had no idea what to expect!  Everyone was friendly and very accommodating to the “stranger in the mobility scooter.”  I only stayed for the actual show, so I didn’t get the chance to “mingle” as much as I would have liked.  I did meet some cool people there.  I’m learning that if you don’t have the guts to start conversations with complete strangers, you will never get out of your social network.  I’m finding that everyone I meet is amused by the name “mAss Kickers.”  People chuckle when I tell them about the name and why we think life after a tumor/cancer diagnosis needs a different approach!  The logo was designed to be a subtle way to promote a proactive lifestyle.  I still feel very lucky to be able to do everything that I’m doing now!  The past few years has been filed with “experiments” and “tests.”  I’m starting to figure things out!   Just getting downtown at night by myself was fun.  I’m faced with numerous physical challenges, but I’ve learned that you need to adapt or get left behind.  I appreciate the help from all my friends and family in supporting all the crazy ideas that pop in my head!  I’m really starting to get busy with things I never dreamed I would do!  I’ve leapt way outside of my comfort zone.  I am still surprised at some of the things I’ve already accomplished!  I’ll admit meeting new people who share the same passion about fighting these diseases is pretty cool!  New ideas are starting to solidify.  I’m very thankful for everyone that has supported me in the past!  There is still a lot of work to be done.  I’ll make you proud.  Stay tuned… more fun stuff is in the works!

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…