They Call Me Galvez

8/14/10 Pinckney, MI – Hell Survivors Paintball Field. Despite a humid midwestern summer day, >150 people came out to support the 2nd Annual Tumors Suck Paintball Benefit.  The inagural event, the first of it’s kind last year, was cursed by severe thunderstorms but it was energized by the enthusiasm and dedication of Team FUBAR.  This year there were no thunderstorms, and the expectations were raised with a year of experience in planning the event.  The 2010 event was highlighted by a few new wrinkles,  a logo was created specifically for the event by Enuf Marketing and Design, a bounce house for kids was introduced, and many new faces participated in the event.  A lot of newbie paintballers got their first taste of paintball play and Team FUBAR once again put on their “mentoring mask” for all the new players.  This year there were more female players, and the enthusiasm for the event increased by at least 10 fold!  The event t-shirt featured the slogan “this ain’t no pity party” that expressed the sentiment underlying the purpose of playing paintball as a benefit for cancer and brain tumor advocacy. There are many similarities between paintball and a new tumor diagnosis. One needs to be cautious, yet stay on the “offensive”.  Much like a medical situation, it is also important that all teammates (medical team +family) are working in a coordinated effort towards accomplishing the mission (beating the tumor mass.)  In a new intimidating situation, one can choose to:

• survive – weather an “attack”,
• dive - give up hope,
• or thrive – continue to do what you need to do and fight back

The paintball benefit is an event where both survivors and non-survivors can thrive by uniting to show support combating all tumors.  mAss Kickers Foundation (MKF) looks to provide support and motivation to all newly-diagnosed patients, family, and friends affected by tumors or cancer.  MKF serves this mission through its website, fund-raising, and select events (such as paintball) throughout the year.  MKF uses two campaigns in the war on both malignant and nonmalignant tumors.  TUMORS SUCK! is a public awareness campaign. It is meant to unify all those touched by a tumor or cancer with a pugilistic, rebellious attitude. Basically, people just wear the logo or post the logo somewhere people can see it to show support for someone under going treatment for a tumor mass… malignant or “non-malignant”. USE THE K.U.R.E. is an action campaign for the newly diagnosed patient and their loved ones to combat any intimidating diagnosis. K.U.R.E. stands for Use Knowledge, Promote Unity, Support Research, and EMPOWER YOURSELF. It’s an excellent strategy to combat an intimidating tumor mass diagnosis not only on an individual level but also on a larger community level.

Many of the participants this year expressed how much fun they had.  They look forward to next year’s event.  The highlight of the event was “the gauntlet”.  Members of Team FUBAR again volunteered to be moving targets as a unique way to raise funds for mAss Kickers Foundation and the National Brain Tumor Society.   As a “sniper” in the gauntlet, I couldn’t help but laugh at the way Team FUBAR hammed up the gauntlet .

The 2010 paintball benefit was a huge success and doubled funds raised from last year under the leadership of Angel Bureau and Andrew Wlodyga.  With another successful event under our belt, we expect an even bigger event next year.  I can’t wait to see the new wrinkles in the 2011 paintball benefit.

This song by The Clash has been in my head the past week. Reminded me of this funny video. The Carlsbad 5000 is a race that has a special place in my heart.  It is one of the largest 5K races in the US and consistently draws elite runners because it is a flat/fast course. In fact many world records have been set there! In 2005, at the 20th Anniversary Race I set my personal record for a 5K and ran a scorching 20:47.  I earned my first long distance medal there for finishing in the top 250 out of ~1000 people in my age group (20-29.)  I’ve always been a sprinter.  I was the little guy who used his quickness in all competition.  I never thought I would like distance/endurance racing.  After the race in 2005, I remember thinking, “Hey, That was kinda cool.  I can only get better.”  Months later I was diagnosed with a brain tumor, which prevented me from enjoying most of the athletic hobbies that used to define me.  I am very lucky to be alive and am now learning new hobbies, but I still yearn for the physical activities I used to enjoy.

Three years ago, I returned to the Carlsbad 5000 with the mission to simply finish the race.  It took me almost three hours with the help of my brother and friends to walk the 5 kilometers (or 3.1 miles).  Two years ago, I returned to walk again with the help of my friends in honor of an online friend lost to brain cancer.  We finished the race in a little over two hours.  Last year, I was out of town for the race.  This year was the 25th Anniversary race.  I wanted to walk for all the brain tumor patients and young adult cancer survivors I’ve met in the past 4 years.  There was no way I was going to miss this race.  A few of my friends agreed to walk with me this year!  I created a team, with the help of the Challenge Center, an awesome nonprofit organization that provides skilled physical therapy and fitness to patients with neurological deficits. They will help me in my quest to return to running.  We decided to start our walk with the Women’s Masters Race early in the morning to avoid the crowds.  This year I finished the walk in 1 hour and 25 minutes.  We shaved off close to 45 minutes off my time.  Today has given me hope.  It made me even more hungry to return to running because I know there is still room for improvement!  Every year I have improved.  I just need to figure out how to improve my balance reactions.  Things are starting to come in focus now!  It’s only a matter of time before I figure out how to walk and run again.  I’m confident the Challenge Center will help formulate a plan.  My goal is by the 30th Anniversary Carlsbad 5000 I will jog it.

Magnum P.I. had one. Mike Ditka has one. Hulk Hogan has one.  Reno 911 cops have them. The Beastie Boys in the “Sabotage” music video had them.  I’m talking about the mustache. You don’t see them very often, so when you see so many of them gathered in one place, you can’t help but chuckle! On Dec 3, 2009  an enthusiastic group of men and women gathered at Bondi, in downtown San Diego to celebrate hairy upper lips.  A little strange?  Perhaps, but there was a message behind this madness.  Men’s Health Awareness, specifically Prostate and Testicular Cancer.  The movement called “Movember” was started in 2003 by Adam Garone and a bunch of his friends in Australia. Men are given one month to grow a mustache and raise funds for prostate and testicular cancer research.  Women help recruit men to grow a “mo”, Australian slang for mustache, for the cause.  They are an integral part in supporting the Movember movement!  It is rapidly turning into a global event!  Women have a very successful pink campaign for breast cancer awareness and generally have an easier time discussing their health.  Men typically don’t like to talk about their health issues.  The mustache is a symbol that opens the door for men to speak about their health.  A new mustache is the first thing you notice on someone when they walk into a room.  I needed the full month of November to grow my mustache, but I was amazed by the responses I got from it.  As a typically clean cut guy, the shock of my “mane” of facial hair drew snickers and jokes about my inability to wipe my mouth after drinking chocolate milk.  Once my friends got over the shock of it, I quickly explained the reasoning for my attempt at a hairy upper lip.  (I hope they will be participating next year so I can crack jokes about them.)   The party at Bondi was full of characters!  From “the Swedish Muppet Chef” to Olympian Swimmer, Mark Spitz I was cracking up the whole night!  It was great to see people having fun rallying together to raise awareness for a common cause.  There is something strangely entertaining about people with mustaches dancing!  hahaha! Men’s Health is an issue that definitely needs to be addressed!  Women show a lot of solidarity in cancer with the pink campaigns.  People rally around pink!  Often it is for their mom, aunt, or grandma.  So many people are touched by cancer.  It’s time we start looking out for brothers, dads, uncles, and grandpas!

Last week I had the privilege of flying to Austin, TX to attend the LiveSTRONG Young Adult Alliance Conference.  This organization is only a few years old, but I think it has a lot of potential to really make an impact on the fight against cancer.  Throughout history, it is the young adults that stimulate change.  This organization brings together the leaders in young adult cancer community.  I met many of my online friends/advocates for the first time face-to-face.  Voices of Survivors, Imerman Angels, Planet Cancer, Tamika and Friends, the Colon Club, Movember, the Testicular Cancer Resource Center, the LiveSTRONG Foundation, the Ulman Fund, and numerous others are doing amazing things!  Them, along with I’m Too Young For This, SeventyK, Camp Mak-A Dream, First Descents, the National Brain Tumor Society, and the Kelly Heinz-Grundner Brain Tumor Foundation inspire me to bring my organization, mAss Kickers Foundation to the next level.  I was able to attend panels discussing: fundraising in the current economy; treatment issues for young adults; psychological, social, behavioral, and health service research; patient education nonprofits; and the YAA Science task force.  There were plenty of opportunities to network with other organizations and even a tour of the LiveSTRONG Headquarters in Austin, but quite honestly the most memorable networking moments for me were the “unsponsored” activities.  I got to room with First Descents and even hit the town with a handful of conference attendees.  Those were the memories I will remember most.  All I have to say is “if you work hard, you deserve to play hard!”.  The LSYAA has a lot of potential to unite a number of organizations with a common goal of fighting cancer and brain tumors for young adults.  I personally would like to see measurable short term and long term goals for the organization.  There is no doubt that this organization has the potential to bring about real change due to the leadership, passion, and skills of all it’s members.  We are all relatively young, full of energy, and passionate about a cause that will unite us.  I think that the potential of the Alliance will be something to take notice of in the next few years!

August 8, 2009 Pinckney, Michigan

On a damp and stormy Saturday in Michigan, ~100 brave souls endured the elements to raise awareness and funds for brain tumor research in a unique new fundraiser, the “Tumors Suck! Paintball Benefit”. That’s right… paintball!  Paintball falls directly in line with the attitude of “mAss Kickers”.

The day started off with a heavy downpour and the chance of thunder showers.  Within minutes the chance of thunder showers turned into actual thunder showers.  The enthusiasm of the members of the FUBAR paintball team provided a “calming-spark” to those eager to play yet disappointed by the weather.  Everyone had to patiently wait out the lightning.  FUBAR’s participation in the event was key to it’s success.  They volunteered to mentor participants in this event to share stategy, techniques, and paintball etiquette.

Some of the participants drove hours from the other side of the state to participate in the event!  The inclimate weather would not be a deterant for these “mAss Kickers” looking to try paintball.   There were creative variations on typical paintball games including “capture the cure” and “survivors vs tumors”.  The highlight of the day was “the gauntlet”.  Members of FUBAR volunteered to literally be targets for participants who donated to the fundraiser!  They would run across the open field and hide behind targets (or chose to instigate the shooters in the open field!)  It provided some humorous moments for everyone involved.  Their willingness to “take one for the team” was a display of the solidarity that is essential to combat an intimidating diagnosis.  Everyone had the opportunity to take a shot at moving “targets” for charity.  FUBAR definitely created some memorable moments for a lot of people.  For one day, patients and their loved ones didn’t have to worry about their medical battles and feel like they could go on the attack.

As the day progressed, the clouds disappeared and the rain finally stopped.  The day was very sympbolic of the attitude a newly diagnosed patient and his/her loved ones must possess in order to effectively battle an intimidating diagnosis.  Things look stormy at first, but with correct knowledge, the right attitude, and patience… things can get better.  We are looking forward to the next paintball event.  Stay tuned, mAss Kickers has a few more events planned!

What a great week! I got back last night from Glacier National Park and I was honestly amazed by the whole experience. The superficial purpose of the week was to teach young survivors how to kayak in white water rapids. What I found was an experience that brought everyone (“campers” and “counselors” alike) together as we prepared for the unpredictable river. It was very symbolic of the struggles one experiences when faced with an intimidating diagnosis. When you look at what is coming up, it looks scary as hell. You got to do it and you need help to get to the other side. The first day, we (the “campers”) were all nervous about turning over in our kayak and being stuck turned upside down under water in the kayak. As the week progressed, our confidence grew with the help of the counselors. Just like our loved ones, they were looking out for us. Their enthusiasm and confidence in us was contagious. For a young adult with an intimidating diagnosis, it is difficult to get that type of response from the medical community because there is still a lack of knowledge on how to treat these diseases with young adult issues.

Unlike a brain tumor or cancer diagnosis, many of us would face a challenge for the first time in the company of others similar to us. We faced the same fear of the river, but this time around we had so many “experts” in our corner. I was amazed by many of the stories I heard… breast cancer, sarcoma, colon cancer, etc… all very different diagnoses, but we all had similar experiences in the fight for our lives. Fighting our fear of the rapids was just another battle we would face but this time we had so many people to lean on. It was very easy to build bonds with everyone because it really was “Us vs the River”. The campers were initially intimidated and the counselors were very enthusiastic about helping us overcome our fears and enjoy the river. By Day 6, we all felt confident in each other, our counselors, but most importantly ourselves. It actually reminded me of a quote I once heard.

The strength of the pack is in the wolf. The strength of the wolf is in the pack.

I look forward to staying in contact with my new friends and taking on any new challenges with them in my corner.

Check out our pictures here

I had the oppurtunity to attend the young adult survivor conference at Camp-Mak-A-Dream in Gold Creek, Montana.  The name is deceptive because anything associated with the word “Camp” for me conjures up images of singing kumbaya, roasting marshmallows, and eating hotdogs.   I didn’t know what I needed to bring with me to a “camp” for young adults.  I honestly did not know what to expect there.  What I found was something I haven’t experienced since I was diagnosed with a brain tumor…  people like me to talk to face-to-face that understood first-hand how much it SUCKS being a young survivor.  It was the first time I’ve felt comfortable talking about my experiences.  I haven’t participated in support groups since I was diagnosed because I thought they weren’t for me.  It’s much harder for me to verbalize my thoughts.  I’m sure there were people there that felt the same way.  We shared laughter, tears, and were able to be ourselves.  The conference held different workshops ranging from “Getting and keeping a job after cancer” to “Dealing with Loss”.  It was nice because all of us were isolated from everything in Montana and only had each other to hangout with.  I felt like I really bonded with people there.  It was kinda cool because they flew us in, and nobody knew each other that well, so everyone was “forced” to get to know each other.  The highlight for me was climbing “the butte” the last day.  The  “butte” is this huge hill with a great view of the mountains.  It took us a 1/2 hour to climb it.  I’m convinced that we couldn’t have done it without each other.   Our mantra was “don’t look back till we get to the top.” The climb was really symbolic of how we were there to support each other.  Some of us had doubts about getting to the top, but we were there to pull each other up physically or mentally.  It could have been really easy to turn around halfway up and be satisfied with the view, but you only get to see one side of the “butte”.  The 360 degree view from the top was truely amazing!  Although I didn’t know what to bring with me to Montana, I definitely left with more than I brought.