They Call Me Galvez

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…

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.