TUMORS SUCK 2014 Part 3

OMG 2014, Las Vegas

*originally published on www.ericgalvezdpt.com

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.

TUMORS SUCK 2014 Part 2

Tumors Suck 2014 Part 1

TUMORS SUCK! 2014 PART 1

               Becky MacK Goes to Washington

        Every year, in the United States, more than one million people are diagnosed with cancer and every year, more than 500,000 people die of cancer.  That is one big ball of stunning, unbelievable and scary to say the very least.  Those facts shouldn’t just scare you, though; they should catapult you into action.  When I was diagnosed with Medullary thyroid cancer and learned that there was no cure for my disease, suddenly whether or not clinical trials would be funded was important to me.  Suddenly, my priorities consisted of things like making sure that treatments and healthcare would be available when I needed them.  The National Institute of Health, comprehensive cancer centers and new drug developments became my central focus. 

That is why I involved myself with the American Cancer Society Cancer Action Network (ACS CAN).

 ACS CAN works with lawmakers to ensure that cancer is a national priority.  The organization works every single day advocating for public policies in the United States that are helping to put an end to cancer and cancer disparities.    More importantly to me, the organization gives me a loud, powerful and effective voice.  ACS CAN gives me knowledge in the land of cancer legislation keeps me up to date on the latest laws that affect cancer patients across the United States.  ACS CAN gives me options when my cancer tries to take them away.

  On Tuesday, September 10^th, 2013, I joined ACS CAN’s staff and volunteers in Washington, D.C.  Together, we covered our capital building in a sea of blue ACS CAN shirts and advocated, educated and told our stories.    A total of 450 volunteers, including 256 cancer survivors attended 463 meetings with lawmakers, demanding that cancer be seen as a national priority.  I was fortunate enough to be a part of this important lobby day and very loudly and proudly represented Florida’s 19^th Congressional district.  Together, we asked for lawmakers to consider three things:

First, we asked lawmakers to replace funding for cancer research that was taken away when the sequestration occurred.  Specifically, we asked that funding for the National Institute of Health and the National Cancer Institute to be restored and for continued funding for both cancer prevention and early detection at the Center for Disease Control.  I am living with a type of cancer that does not have a complete, systemic cure and this funding is essential for people like me because we depend heavily on cancer research and clinical trials.  Less funding means less research, less drug development and less hope for my cure.  Less funding means limited access to clinical trials.  Less funding means less lives are saved.  I will not accept that.  It’s time for less cancer and more funding, research and options. 

Second, we asked lawmakers to support legislation that encourages palliative care or quality of life, something that has been proven to decrease healthcare costs and improve the quality and length of life in cancer patients.   When I met with members of Congress, I explained to them that cancer comes with physical pain, nausea, anxiety and emotional distress.  Palliative care involves addressing the needs of the whole patient, not just the disease and, while palliative care does involve things like hospice and end of life care, it doesn’t begin there.  Medical professionals make use of palliative care at the beginning of a patient’s diagnosis and continue with it during treatment.  Every cancer patient has the right to be free of pain and nausea and to have his/her entire self treated.

 I will never forget laying in an MRI scan for over an hour.  I was required to lie completely still the entire time, but all I did was worry and cry.  I knew that the radiologist was looking for tumors and I panicked at the thought.  I couldn’t stay still and as I sobbed, my entire body shook.  Because I was moving so much, we had to repeat the procedure the following week.  This time, the nurse offered to give me something to calm down and rest before the procedure began.  Repeating the procedure unnecessarily cost both me and the hospital more money.  Had someone addressed my emotional needs the first time, it not only would have saved money, it would have helped my anxiety and saved time.  That is palliative care.  Yes, we need to treat the cancer, but we also need to consider every other aspect of a cancer patient’s experience. 

Finally, we requested that Congress increase the federal cigarette tax by 94 cents.  An increase in the federal cigarette tax has been proven to deter youth from smoking and decrease healthcare costs.  I recently learned that for every pack of cigarettes a smoker purchases, it adds $10.47 to the United States economy.  Nothing, and I mean absolutely nothing, good comes from smoking a cigarette or using any type of tobacco product.  

  It isn't just research that is going to help find cures for people like me.  It is also the public policies that allow for the implementation and funding of that research.  Know what’s happening in your community.  Demand that your lawmakers at the local, state and federal levels are paying attention to their constituents, people that are affected by this disease every single day.  Let’s hold them accountable.  I know I will.

Tell That Tumor Off!

For all you patients with tumors or loved ones of patients with tumors this is your chance to “vent”. Leave a comment. We will not edit anything, but we do have one rule: PLEASE REFRAIN FROM USING RACIALLY, CULTURALLY, SEXUALLY, OR RELIGIOUSLY DEROGATORY WORDS! Remember anyone can read this. Thanks. 

Sup Brain Tumor

My name is Eric. I’m a 38 year old guy originally from Michigan. We met in Sept 2005. We had a 1.2 in 100,000 chance of meeting. Because of you I haven’t been able to return to work as a Physical Therapist, go surfing, run, swim, or bike. My balance is all messed up because of you. You scared the hell out of me, my parents, my family, and my friends. “F” you. Actually, thanks for making me stronger, smarter, and more focused. You picked the wrong guy to mess with. There are a bunch of smart people doing research to fight you. It’s only a matter of time before before someone finds a cure to fight you. Your days are numbered.

Sincerely,

Eric AKA “Galvez”

2013 Year in Review

2013 was another exciting year for mAss Kickers Foundation! We got our first office space at the prestigious San Diego Foundation. This was the first step in attaining credibility as a startup nonprofit. In the San Diego Foundation, we would be neighbors with CoTA (Collaborations: Teachers and Artists), Voice of San Diego, Pacific Arts Movement , and other San Diego based nonprofit organizations. We made some great connections and look forward to future collaborations.

2013 was also the year that we created mAss Kickers Sports. This was the first year we had athletes pushing themselves through competition to honor the people who are in an epic “battle” for their lives and well-being. People ran, biked, swam, played soccer, and played basketball to honor the brave people combating these horrible diseases!

mAss Kickers Foundation attained new video equipment and created a bunch of new videos here: 

We were very excited to start 2013! In January, mAss Kickers Foundation was well represented at the American Physical Therapy Association’s Annual Combined Section Meeting in San Diego. We are looking forward to getting more involved with the APTA Oncology Section to address physical rehabilitation for post-treatment impairments in tumor/cancer patients.

mAss Kickers Foundation had our first table at the C4YW(Cancer 4 Young Women) conference in Seattle, Washington in February. It was very interesting gaining insight on the unique issues of survivorship after breast cancer treatment. We met many new friends there and we look forward to returning in 2014!

In March, mAss Kickers Foundation had the opportunity to travel to Hawaii and speak about young adult survivorship at the University of Hawaii at Manoa, School of Social Work. Hannah Hansen, Marc Rodriguez, and Eric Galvez shared their personal stories as young adult survivors with future Social Workers and addressed questions from the students. One of the first high school mAss Kickers, Catherine Blotner, attended Cancer Treatment Center of America Blogger Summit again in Arizona. So many great connections were made there.

Later in March, we were introduced to the concept of “Integrative Medicine.” To learn more about Integrative Medicine to fight cancer, Arilda Surridge, Monika Allen, and Eric Galvez attended the UCSD Integrative Oncology conference. 

In April, we had a table at the Stupid Cancer, OMG Conference for young adult cancer survivors in Las Vegas, NV. It was great reconnecting with old friends and meeting new friends who are just starting their survivorship journey. OMG is the premier gathering for education and networking for young adult survivors.

Collaboration is the KEY to winning the war on tumors/cancer. Realistically, no single person or organization will defeat these diseases. In May, we brought together scientists, patients, healthcare professionals, and advocates together to talk about how, TOGETHER, WE CAN FIGHT THESE DISEASES

In July we continued our international travel.  We visited Tokyo, Japan and met up with a few survivors in Tokyo.  We then went to Manila, Philippines and gave a talk at Ateneo De Manila to future healthcare professionals and met some cancer survivors.  We made many new international friends and look forward to returning some day.
Japan Day 1 Japan Day 2 Japan Day 3
Japan Day 4 Japan Day 5 Japan Day 6
Philippines Day 1 Philippines Day 2 Philippines Day 3
Philippines Day 4 Philippines Day 5 Philippines Day 6 Philippines Day 7, 8

We returned to the USA in August and spent a few days in Michigan for one of our signature events. Angel Bureau and Andrew Wlodyga organized the 4th Annual TUMORS SUCK PAINTBALL BENEFIT at Hell’s Survivors Paintball field in Pinckney, MI USA . The event has gotten more popular every year! We are always honored to meet new survivors at this event! It is also great seeing the die-hard paint ballers every year because their enthusiasm in the event embodies the assistance from friends and family that a “post-treatment survivor” needs to become a “post-treatment thriver.”

In October, we did a minority bone marrow registry drive for A3M at the FilAmFest cultural festival in San Diego, CA USA. We believe that it is imperative for ethnic minorities to be on the registry because life saving bone marrow matches are based on the similarities in the genetic codes of people of similar ethnic backgrounds. Later in the month we held our annual International Tumors Suck Day: Celebration of Life in San Diego California. At this event we honored the people that stuck by us through the difficult times with toasts for family, friends, and fellow survivors. Check out the video

In November, we teamed up with A3M again to host a minority bone marrow registry drive at the Pacific Art Movement’s 2013 San Diego Asian Film Festival. Many new connections were made there, opening the door for future collaborations.  Of course we had to participate in Movember/"No-shave November"... always funny seeing the pictures and the nicknames for the facial hair!

In December, we are moving offices again because we do too much travel to necessitate a formal office. We decided to look into renting desk space at 3rd Space in San Diego. There are many start-ups and creative organizations there. We are looking forward to the new collaborations we create there!

We have big plans in 2014. We want to do more international travel next year to educate people about post-treatment “thrivership”… We potentially have the University of Singapore and hospitals in Vancouver Canada on the agenda. We also may return to the University of Hawaii at Manoa. Please consider a tax-deductible donation so that we can fund our ambitious 2014 plans! THE WORLD NEEDS TO LEARN THAT A TUMOR/CANCER DIAGNOSIS IS NOT A DEATH SENTENCE. THEY MUST LEARN HOW TO KICK MASS!