They Call Me Galvez

Dragon Hill Lodge -38th Parallel Healthcare Symposium Day 1

I left for Korea at 3:30AM on 10/29 and I got into Seoul at 3 PM on 10/30.  It was a long flight with a 2 hour layover in Seattle.  I haven’t been to Seattle before, so it was exciting to be somewhere new.  I had a 2 hour layover there, so I had some time to do more exploring! Here are photos from my layover.  Got to watch 3 movies on the flight.  I still cannot sleep on planes.   I shut my eyes, but I cannot sleep no matter how tired I am.  I was surprised that 3 seats next to me were empty on the 11 hour flight from Seattle to Seoul!!  It was great! When I finally got to Seoul, I was totally out of my element. I had no idea where I was going!  Going through customs to in Singapore will be exciting because I am flying on Korea Air, so I’m not exactly sure how I will communicate with the people there…  Being disabled and unable to speak the language will be huge barriers!  I could already tell that some people were already uncomfortable with me.  Lots of confused looks.  I’m not sure if it was the language barrier or the fact that I was a person with a disability traveling by myself.  The stigma of disability is very strong in Asia!  I recall that the only people I see in wheel chairs are older patients with family members with them.  I have yet to meet a younger person with physical disabilties on my travel.  Trish the stewardess from Delta was so helpful after I deplaned!  I recall that last year traveling to Honolulu, Tokyo, and Manila finding the elevators in airports were difficult due to placement of the signage and the language barrier. Will def have to study the Airport Maps when I get to Singapore before deplaning.  Luckily Trish and some of the other members of the Delta flight crew waited for me on the other side of customs and walked with down with me to baggage claim.  I would have been totally lost!  My friends Leah and Jorge were there to pick me up in by the baggage claim that was so helpful.  I already anticipate an issue trying to find a cab or shuttle from the airport in Singapore to the Hotel.  Going through customs in Singapore from Korea will be very interesting!   Today is a day of rest and exploration.  I’m still trying to adjust to the time difference!  Tonight I’m going to a Halloween party in Seoul!  Should be fun!  Seoul is very hilly, so I anticipate lots of difficulties with the mAss Kicker mobile.  Maybe next time, I bring my manual chair… stay tuned… tonight is halloween in Seoul…

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!

My grandfather is still inspiring me even though he passed away my sophomore year of high school.  A few years ago, we went to the Philippines for my aunt and uncle’s wedding anniversary and grew interested in the things my grandpa did.  My brother and I brought a camera with us and we made our one of our first videos. My cousin Jojo Calora found some old yearbooks from his early years at East High School (now gone) in Minneapolis, Minnesota and from the University of Minnesota where he was a Chemistry Major.  It blows my mind knowing that he was one of the FIRST Filipino exchange students in the United States in the 1920s!  After that, he spent some time in Germany and got his PhD!  This was probably right before World War II and the rise of Nazi Germany!  I still can’t believe he was there!  He returned to the Philippines and was a Professor in Soil Sciences.  Anyways, I wish I knew more about him.  I’m sure that he had a bunch of interesting stories!  I was told that he used to visit us in Michigan when we were babies and toddlers.  The only thing that I remember was that he would always pinch our cheeks.  I hated that… His activity in the midwest probably explains how we ended up in Michigan.  I am so proud to be descended from such an interesting man!  I was surprised to learn that he even has a High School named after him and a lecture hall dedicated to him in the Philippines!  Our dad is a reserved guy, so we never talked about this stuff growing up… kinda cool that we can actually do our own research!

high school in Minnesota in the 1920s

College in the 1920s at the University of Minnesota

Last weekend I had the opportunity to go to Austin, Texas to check out the Brain Power 5K race/walk created by Kelly Bollinger.  It was great because I got to reconnect with my friend, “Hawktober for Brain Tumor Awareness” founder, and fellow brain tumor survivor Matt Cotcher I was also excited to reconnect with my other friend, Runi Limary.  Another brain tumor buddy, Iram J. Leon was kind enough to host me for the weekend.  J. is a very accomplished runner and has garnered national media attention.   He has won multiple races after brain surgery and qualified for the Boston Marathon earlier this year! He picked me up from the airport on Friday and we went directly to one of my favorite restaurants in Austin so I could have some brisket tacos.  I was first introduced to brisket by a friend in San Jose, CA years ago.  When I learned about the lengthy preparation of brisket, I became a big fan of Texas BBQ!  They take their grilling very seriously in Texas!  After college, I proudly held the tittle of “Grill Master” after years of “apprenticeship” watching my dad and my housemates in college!  I was told that I have to check out more Texas BBQ places the next time to get an idea of the different types of BBQ! Later that evening our friend Chris invited us to an acrobatic-equestrian-Cirque du Soleil-type show, Gladius.  Physical displays of skill always impress me!

The next day J took me to an Ultimate Frisbee Tournament. I was surprised that teams from all over Texas came to this tournament!  On the way back, we did a “drive by” of the University of Texas Campus in Austin on a Football Game day!  I def want to check out an authentic Texas tailgate before a football game.  I’ve been to tailgates in Ann Arbor, Columbus, East Lansing, Chicago, and Pasadena.  I want to go one for a South Eastern Conference game and a Pac-12 game.  I always enjoy “geeking out”, so J took me to the Texas State Capitol in Austin!  After the trip to the capital, we stopped by this really cool graffiti art wall where artists paint whatever they want on the walls!  Here are some pictures from the day!  Instead of lunch, we decided to get some ice cream, so we went to another Austin staple,  Amy’s Ice Cream.   For dinner, we met up with Chris to catch up and watch a little football.  Later that evening, J went out while I stayed in to watch the Michigan-Notre Dame football game.   I am addicted to Michigan Football.  My general mood in the fall is sadly dependent on the outcome of the Michigan football games.  The past few years I have been pretty grumpy!  I’m learning to let go!  Sadly, it was an early night for me because Michigan got demolished, which in hindsight was probably a good thing since we had to get up early for the Brain Power 5K.

Kelly and Runi have done a great job organizing the Brain Power 5K.  I was very impressed with the turnout and growth of the event!  In a short time it has grown from 300 participants to over 14 hundred!  It was great running into Matt at the start of the race!  When I first found out that he writes about sports, I was intrigued.. We got along well from the very beginning.  The mAss Kickers Foundation Support Campaign, Rock Da Hawk is very closely tied to the “Hawktober for Brain Tumor Awareness” Campaign.   Matt has taken the mohawk campaign and run with it!  I support “Hawktober ” 100% because mohawks are hard to ignore, and ANYONE can participate in the campaign! Anyways, I had to explore the Brain Power 5K venue because I was amazed that the event was actually created by survivors and run by survivors!  You don’t see that too often!  Here are pictures from the Brain Power 5K event!   J organized one of the larger teams and had the top 3 male overall finishers and the top 3 overall female finishers!   I was honored to be a part of “Team Scarecrow” so I created the video above!  After the race, we went out to eat at another Austin restaurant that was kind of like a Denny’s.  An omelet and pancakes for dinner, is always filling!  The people in Texas are so hospitable!

The next day, my friend Gayle picked me up from Austin, and took me to Texas State San Marcos to lecture to Physical Therapy Students about my experiences as a young healthcare professional turned brain tumor patient!  I always enjoy lecturing to students because they always keep me on my toes and ask some of the more interesting questions.  I did not realize how far San Marcos was from Austin.  Gayle had to pick up her kids from school so I had to find a ride to Austin.  The last time I spoke at Texas State, another one of my friends drove me there, and back.  I thought that I could simply take a Uber car from the school back to Austin.   I was wrong.  There were no Uber drivers in San Marcos plus I found out that a taxi would be ~$100 to take back to Austin.  I was so lucky that Dr. McDowell was able to give me a ride back to Austin on her way home from San Marcos!   Dr. McDowell dropped me off at a restaurant and I met up with Gayle again and another survivor friend, Deb.  I always enjoy meeting other survivors, even survivors of different types of tumors/cancer. There is always an unspoken bond that “connects” us.  I always have a great time in Austin and look forward to returning.

I have some more cool stuff in the works.  I just confirmed that I’m speaking at a military healthcare conference in Seoul, S. Korea in November.  They want me to:

1. share my story as a healthcare professional turned oncology patient
2. present the benefits of physical activity/exercise in a post oncology treatment population.

I have to alter my presentations for a military and Korean audience.  This will be exciting!  I’m thinking about going to S. Korea early to experience Halloween in another country… I’ve had some pretty exciting Halloweens in the past, but that is a story for another time… Seoul here I come!  I wonder how people will respond to the “mAss Kicker Mobile” there…  it was a different in experience in Japan and the Philippines last time.

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!