Thursday, July 21, 2011

MD Anderson, Together in Hope Brain Tumor Conference 2011

I had the privilege of attending my first brain tumor specific conference at MD Anderson last weekend and it left quite an impression on me. It was co-sponsored by MD Anderson Cancer Center and the National Brain Tumor Society. Personally, I like it when two monster organizations collaborate on events and show unity against a common foe! It seems like I always find a handful of young adult survivors at these conferences! We tend to gravitate towards each other because we totally stick out. It may be due to the fact that we're the ones that tend to be the loudest and have the most "spunk" at these conferences. Whenever I go to these things, I feel like I'm crashing a "grown-up" party. I'm always happy to come across a fellow young adult survivor because we are familiar with what the other has been through and are eager to "celebrate" life. It makes me want to celebrate because you go from feeling alone to having someone there who understands. Young adult survivors are too young to get grouped in with the older cancer patients our grandparents age and too old to be grouped with the pediatric population. In the young adult population, many of us are still trying to find our life path or are just starting our families. A tumor or cancer diagnosis can seriously derail our plans or limit our potential.

This weekend made me realize that we can fight back. Emotional support for survivors is growing. Survivors are getting stronger through the numerous programs out there, but I think it is time to mount a counter attack directly on these diseases. Unity for survivorship is very prominent, I think that concrete strategies are just now developing to fight these diseases. Then it reinforced a weapon that we can use to fight back against these diseases... RESEARCH. I don't think people really understand it, but this is the best way. People walk charity walks and hold fundraisers, but what exactly are you supporting? Stand Up to Cancer and the Brain Science Foundation are taking the lead in this charge. I personally think a "cure" is still a long ways away, but I think we have the resources to more effectively manage the symptoms to live with these diseases. As a physical therapist, I know that we can't always heal a chronic orthopedic issue, but we can offer strategies to help manage them.

I think that we will have an easier time controlling the diseases through:
  1. early diagnosis,
  2. lifestyle modification (diet, exercise),
  3. medication, or
  4. surgery
I think this is a more efficient approach to the war on cancer rather than finding an absolute "cure" for tumors or cancer. In a way, I think we can make these diseases our "beeeee-ooootch" by more efficiently managing the symptoms! HAHAHA!

Anyways at the conference at MD Anderson, I was able to connect with so many amazing people: survivors with incredible stories, doctors/health care professions who devote their lives to helping brain tumor patients, and philanthropists who work tirelessly to fight these horrible diseases. The most memorable thing that I will take home from the conference was meeting so many people similar to me face to face! I've been to cancer conferences and meningioma meetings, but the informal interaction with the participants at this conference made going all the way to Houston worth the energy. Although I am physically tired, I'm emotionally recharged! TUMORS SUCK! Wait till you see what mAss Kickers Foundation is up to...

*originally published on May 24, 2011 @ 8:06

OMG! 2011

Last week I got to spend some time in New York City. On Thursday, I had the privilege of speaking at Columbia University’s Doctor of Physical Therapy Program’s PsychoSocial dynamics of Disability Class. I have spoken at many physical therapy programs, but this time would be different. This time, I brought two other young adult survivors with me. We are all young Filipino Americans “re-entering” the world as young survivors each at different stages of our survivorship. Normally, I speak to classes by myself about my story, but it was nice to step out of the spotlight. Jenn and Ligaya did a great job answering questions and telling their stories. We had very unique discussions because we are all at different stages of our recovery. We felt very comfortable answering ALL questions and challenged the students to ask us ANYTHING. That statement lead to some very "interesting" discussions. I was the senior member of the presentation at 5 years out. I think having male and female perspectives on survivorhip were interesting to students and hopefully made them realize young people can and do get diagnosed with cancer and tumors.

Our friend Zac met up with us later that night and we all crashed in a tiny New York hotel room for the I’m Too Young For This, OMG Summit for Young Adult Survivors. I was sooooo excited to meet other young adult survivors because we are very difficult to find! It was great meeting many of my Facebook friends for the first time in person at the summit! It was even more fun to reconnect with friends I've met on this crazy brain tumor ride! Young Adult Survivors have a hard time finding peers who understand our unique issues such as fertility preservation, employment/education issues, and relationships. I feel very fortunate to have a strong support system of family and friends, but to meet new friends close in age that can empathize with our unique situation was very empowering. It was actually nice to be a participant and not a presenter at this event. I can honestly say I've never been to an event like it! I'm close to the twilight of my young adulthood, but I feel confident that the young adult survivor will know where to turn for support! Participants at the OMG! Summit definitely got the tools they need to "THRIVE" after an intimidating tumor/cancer diagnosis.

*originally published on Apr 20, 2011 @ 16:29

A Physical Therapy approach to Survivorship

Uh oh, the "Physical Therapy Bug" just bite me again. Last week I went to New Orleans for the APTA Combined Sections Meeting (CSM). It was VERY different from the last time I was in New Orleans as a student on spring break... I'll keep those stories private... hee hee hee. CSM is a national physical therapy conference that brings together all the specialty sections of physical therapy practice (like orthopedics, neurology, pediatrics, oncology, etc). As a student and young professional I was a member of the Student Conclave and Sports Physical Therapy Section. I'm now a member of the oncology section for obvious reasons. Anyways, I got to attend 4 great sessions in which I have strong personal interest:
  • An Evidence-Based Approach to the Identification and Screening of Balance for Patients with Cancer
  • An Evidence-Based Approach to the Examination and Intervention of Balance Disorders for Patients with Cancer
  • Exercise and the Athlete with Cancer
  • Oncology Exercise Issues in Outpatient Physical Therapy: Beyond ROM and Fitness Prescription
There was no mention of brain tumors in any of the sessions I attended. In my situation, physical therapy/rehabilitation play a large role in my personal recovery. Now granted, I think I have a unique perspective on brain tumor survivorship, I think it is sad that I was left to fend for myself to reach my full rehabilitation potential. I was very lucky to have a strong medical team offering me sound advice! My rehabilitation potential would have been cut off from insurance a long time ago, but luckily I found the Challenge Center to continue therapy. Nobody knows how much I will recover. Since no one has answers, I will continue to push my limits. The Oncology Section of the APTA seems to be the best place for me to find answers. Unfortunately, there is nothing laid out there for young brain tumor survivors to improve function and quality of life. More digging is needed! The APTA Oncology Section is for healthcare professionals. I wanna do something that gives resources directly with patients. Enter mAss Kickers Foundation. I think that mAss Kickers Foundation can supply an arsenal of information and Knowledge for the newly diagnosed patients and their loved ones to battle a tumor mass or cancer diagnosis. Unity among all those touched by both malignant and benign tumors will only strengthen the opposition against these horrible diseases. Ultimately it will be scientific Research that will be our greatest "weapon" to fight a tumor mass or cancer diagnosis on much larger scale. Eventually, knowledge, unity, and research will lead to Empowerment for everyone touched by these horrible diseases. Confidence and Courage are some of the first things lost with an intimidating tumor or cancer diagnosis. By Using the K.U.R.E. we develop a strategy to manage these diseases until the "magic cure" is found! In Physical Therapy, we can't always cure a pathological or structural dysfunction/pain but we can offer strategies to manage the symptoms. I think that same approach can be applied to survivorship.

*originally published on Feb 13, 2011 @ 17:09

"I'm a mAss Kicker! Pass it on!"

Check out ALL the mAss Kickers Videos here!

2010 was a banner year for mAss Kickers Foundation (MKF). Past success leads to higher expectations in the future. Higher expectations in 2011 brings with it bigger goals. mAss Kickers will continue presenting unique articles/interviews/resources for newly diagnosed patients on our website.

We do have some cool new events and activities planned in 2011. You'll have to stay tuned on to keep up with us! In addition to providing resources and articles for newly diagnosed patients and their loved ones on our website, we are planning at least 3 major events in 2011:
  • in Summer 2011, the 3rd Annual TUMORS SUCK! Paintball Benefit in Michigan
  • in Fall 2011, TUMORS SUCK! DAY Event in sunny San Diego CA
  • in SPRING 2011, an exciting new mAss Kickers Foundation event in sunny San Diego (details to come... stay tuned!)
Our goal is to raise at least $5000 for MKF in order to host at least the three major events listed above, fund smaller MKF projects (conference registration, website maintenence, office supplies, operational costs, etc) and to donate funds to our selected 2010 tumor/cancer research beneficiary before December 31, 2010. We have very ambitious plans in 2011.

If you are a mAss Kicker, please consider a tax-deductible donation and pass it on! Please forward this webpage to your contacts so that we can fight back against ALL tumor masses! Be a part of the begining of "Something Special"! If you feel more comfortable, mail a check addressed to "mAss Kickers Foundation" to:

mAss Kickers Foundation

2010 Inaugural Fundraising Drive

1950 Camino De La Reina #312

San Diego, CA 92108

The funds raised from this campaign will go to: the 2011 general operations of MKF - printing brochures, distributing stickers, participating in conferences across the US, creating unique mAss Kickers events, and supporting our 2010 research beneficiary. In 2011, we will focus more on using the "K.U.R.E." as a strategy for ALL individuals touched by a tumor mass. When someone gets diagnosed with cancer or a tumor, Knowledge, Unity, and Research lead to Empowerment for everyone affected by these horrible diagnoses!

What are mAss Kickers Foundation's Ultimate goals?
  • Provide unique articles and interviews useful to the newly diagnosed patient and their loved ones on our website.
  • Promote Unity among ALL cancer/tumor types and between patients and their loved ones through a common "pugilistic" attitude.
  • Support research through articles, events, and donations.
  • Empower the newly diagnosed patient and their loved ones with a strategy to become proactive in their care so they feel less helpless after getting intimidating news.

To see what we have accomplished in 2010: click here!



- the mAss Kickers Foundation team

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*originally published on Dec 22, 2010 @ 15:51

2010 LiveSTRONG Young Adult Alliance Conference

I can finally catch my breath. Got back last night from an epic trip to Austin, Texas and then Chicago, Illinois. I'm now taking a break... but not for too long... already thinking about mAss Kickers Foundation (MKF) stuff for next year! Things with MKF are starting to get very serious and I'm starting to gain credibility in the Physical Therapy community. I got to represent mAss Kickers Foundation at the LiveStrong Young Adult Alliance meeting in Austin a couple weeks ago. Then I had the opportunity to speak at Rehab Grand Rounds at Rush Hospital in Chicago. My buddy Blayde Carrol, a fellow brain tumor survivor, helped me out in Austin. I was telling him mAss Kickers Foundation is still on the "JV team". Soon we will be ready to "move up to varsity". I'm still laying the ground work for MKF to make a big splash in the survivorship community. I'm working on a way to combine: survivorship, research, advocacy, and physical therapy/rehab. I've got a a pretty good idea... just have to work on the details. I've made some great contacts there. Organizations like i2y, First Descents, Imerman Angels, MyLifeLine, Chasing Rainbows Productions, The Ability Center, Ulman Cancer Fund, Rise Above It, Tamika and Friends, Movember, and SeventyK are already doing some great things. I consider them to be "varsity" organizations. mAss Kickers Foundation (MKF) is almost ready to make the jump from "junior varsity" to "varsity". Things are getting much more serious now. I'll admit I was screwing around before. I will be much more serious now. We will be addressing a need in unifying ALL types of tumors because everyone with cancer has a tumor, but not everyone with a tumor has cancer. Since my tumor was "benign", I didn't officially have cancer. I related more to the young adult cancer survivors than I did to the typically older brain tumor demographic. When I was diagnosed I didn't know any young adult brain tumor survivors. I have always been a little different from everyone, so it didn't bother me that much. (OK, maybe all the initial "babying" kinda bothered me.) Anyways, I am so glad to have finally found a group of survivors who are similar to me. We still stick out, but at least we will stick out together. This is the perfect opportunity to cause a "ruckus"! That is what the "TUMORS SUCK!" campaign is meant to do... Anyways, MKF made some great new connections in Austin. I kinda wish I had more time to mingle with some of the other organizations there! They unveiled a new awareness campaign called "BREAK CANCER". It is essentially a way to break silly world records. Hee hee, I know some pretty creative people so it will be fun recording some of the stuff we do... Anyways, it was great seeing familiar faces in Austin. I had the scooter with me so I tried my best to stay out of trouble. I tried to behave myself, but I think I did run some people over... :D I can't be good all the time! Anyways, it was a great time in Austin! I look forward to next year! From Austin, I flew directly to Chicago for Rehab Grand Rounds at Rush Hospital. I forgot how much I love the Windy City! To be continued...

*originally published on Nov 15, 2010 @ 17:25

Houston - MD Anderson Conference Fall 2010

It has been a hectic two weeks! I'm still trying to catch up. Two weeks ago, I had the opportunity to go to Houston, TX to attend the MD Anderson Survivor Conference. The weekend marked many firsts for me. It was the first time speaking at a cancer survivor (not brain tumor conference), first time sleeping in a nice hotel room by myself, and my first time hanging out on my own away from home with my mobility scooter (which I dubbed the "mAss Kicker Mobile".) The first night I met up with some other young adult survivors at the hotel bar! Was great just hanging out in an atmosphere that wasn't sterile like an organized group setting. mAss Kickers Foundation had an information table at the conference which we shared with the Young Survival Coalition. It actually affirmed for me how young adult survivors really stick out in the survivor population. There is an immediate bond when you find out a person is also a young adult survivor. There were a few young adult volunteers that created our "science project" display, passed out brochures/Tumors Suck stickers, and spoke with people about what we do. Our booth was constantly surrounded by laughter. We were always cracking up about something... not something you usually see in the survivor world. Anyways, we all stuck out and it was great! I think everyone got to take a spin on the "mAss Kicker Mobile"! Always good for a laugh...The workshop I was involved in went well. Dr. Anna Franklin and Rhonda Armstrong Trevino were on on the panel with me to talk about Adolescents, Young Adults and Parents: Becoming the Best Health Care Advocate. It is funny, public speaking is getting easier now that I have something to say. I still don't like being in the spot light. I'm like Statler and Waldorf. Anyways, The conference ended with a very cool drumming session... On a side note, I think drumming could be used in my personal OT rehab. After the conference ended, a buddy of mine from college picked me up and we planned to go out to grab a bite to eat and then grab a drink. The mind was willing, but we ended up ordering pizza at his place and watching football while I struggled to keep my eyes open! 10 years ago, we prob would have gone out to eat and then went out... things have really changed... hahaha. I hope to come back to Houston and participate in another MD Anderson event! After Houston, I went back to MI for the wedding of one of my best friends. It was a great time! to be continued...

*originally published on Oct 7, 2010 @ 13:08

Re-cap: Second Annual Tumors Suck Paintball Benefit

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.

*originally published on Aug 16, 2010 @ 13:37

Stache for a good cause!

eg_7906091_nMagnum 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!

*originally published on Dec 6, 2009 @ 19:31

LiveSTRONG Young Adult Alliance (LSYAA)

livestrong 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!

*originally published on Nov 16, 2009 @ 23:20

Re-cap: Inaugural Tumors Suck Paintball Fundraiser

033August 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!

*originally published on Aug 9, 2009 @ 21:31

The Wolf Pack at First Descents

FD blue logoWhat 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

*originally published Jul 12, 2009 @ 16:25

Young Adult Survivor Conference at Camp-Mak-A-Dream

dscn2545I had the opportunity 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.

*originally published on May 24, 2009 @ 23:10

Wednesday, July 13, 2011

That Damn Freckle... PART I

It's hard for me to simplify the last 3 years of my life... so, if you're reading this I sincerely appreciate your willingness to hear PART I of my story. It was the Summer of 2008 & I had been happily living & working in San Diego for almost 2 years. Life was good...

That June, my mom noticed something on my left calf when my parents were visiting me in San Diego for the US Open. From across the room she saw that damn freckle & asked me how long it had been there... I told her I'd seen it when I was shaving my legs but hadn't really thought anything of it. I mean, I knew the danger signs & it didn't match up to any of them... it wasn't assymetrical, raised, large in diameter, bleeding, etc, etc. In fact, the only thing that made that damn freckle different from the hundreds of other freckles on my body was that it was black... all my other freckles were various shades of brown. But, for some reason that damn freckle gave my mom a bad feeling -- & my mom doesn't freak out about anything -- so I promised her I'd get it looked at as soon as I could.

So, on Friday, July 11, after a carefree, sun-filled vacation with my ex-boyfriend, I went to see my primary care physician for the first time. Lucky for me he was not only very cool but also very thorough... AND, I had great health insurance. I showed him that damn freckle & nervously laughed as I told him the story of my mom's worrisome discovery. Based on the lack of danger signs, he too thought it was nothing of concern. But -- & I'm thankful everyday for this but -- he said, "If it'll make your mom feel better, I can biopsy it." So, he shaved that damn freckle right off, put a band-aid on my leg & sent me on my way. I had a happy hour to go to after all... & that band-aid wasn't going to stop me!

A week & a half went by & still no word from the doctor... they always say "no news is good news" but something just didn't seem right. Finally, on Wednesday, 7/23, I got a call from the nurse on my way home from work... "The doctor would like you to come in ASAP so he can review your biopsy results with you." I knew that was a bad sign. I started to panic & begged her to tell me what was going on. Why did they need me to come in? Should I be worried? Why couldn't she just tell me everything was ok? After insisting she couldn't tell me over the phone, she put me on hold. I guess she got the doc's permission to tell me because when she came back on the line she said the 3 words that would haunt me til this day... "IT'S A MELANOMA."

The next week was a total blur... breaking the news to my family, lots of crying, scheduling my first oncologist appointment, shame, emotional phone calls with family & friends, internet research, anger, a likely stage I diagnosis, sleepless nights, denial & complete & utter confusion. How can I have cancer? What does this all mean? How bad is it? Does stage I mean I shouldn't be worried? Aren't I too young for this? Is it my fault? What's the oncologist going to say? Does cancer automatically mean chemo? Will I be allowed to be in the sun again? What if it spreads? Am I going to die? My imagination filled my mind & heart with fear that took me on an emotional rollercoaster I couldn't have prepared myself for no matter how hard I tried.

Friday, August 1 was my surgery... the oncologist cut a chunk out of my leg, both around & under where that damn freckle had once been, just to make sure the surrounding tissue was clear. Fortunately there was no pain... I would just be left with a dent in my leg & a lovely scar. After a very long week of waiting for results, we were given good news: CLEAR MARGINS. It was confirmed as stage I melanoma, the cancer cells hadn't spread internally & my lymph nodes were all healthy. I was physically "cancer free"... little did I know that emotionally the cancer would stick with me for the next 3 years...

Stay tuned for PART II...

Tuesday, July 12, 2011

Running is Living

Simple sentences sometimes tell complex stories. One such sentence says so much about the life I have lived for the past two years and the life I will most likely have to live for as long as I’m around. My story goes like this: I am living with cancer.

I was born with a genetic disorder called Multiple Endorcine Neoplasia 2A, but I wasn’t properly diagnosed until I was 28 years old. This disorder consists of tumors of the endocrine system, particularly on the thyroid and adrenal glands. On a cold February day I received results that would not only change my life completely, but would take the living breath out of my soul in that very moment. I tested positive for Medullary Thyroid Cancer, the main component of my genetic disorder. Two words from the oncologist’s mouth spun around in my head: cancer and incurable. With no medicinal cure to date we took advantage of my only option and I underwent a nine hour neck surgery to remove my thyroid and forty seven lymph nodes. The doctors removed as much of the cancer as they possibly could, but they were unable to remove all of it.

That was two years ago and today we play what is called the watch and wait game. I have been knowingly living with cancer since then. I was unknowingly living with cancer before then. I didn’t look sick five years ago, I certainly don’t look sick now and for the most part I’m really not that sick. Scientifically, though, I guess you could say I’m sick. Technically, I suppose. I try my best not to label myself as sick, but I am reminded of my disease with every scan, needle poke and doctor visit. This is my new life: Living with cancer.

Not all things that have stemmed from my cancer have been completely horrible. As a matter of fact, some things have turned out very well. I take my time more often, I watch the sun set every night, I think sunrises are amazing, I am more aware of life around me, I take better care of myself than I ever have before and I try to have fun, lots and lots of fun. I am involved in the cancer community, physically active, motivated and confident. I truly don’t “sweat the small stuff” and there isn’t a whole lot that gets me down. These are all wonderful things. They are simple things, like sand between my toes, but they are wonderful things.

The best thing that has happened to me is running. Yes. Running. It’s invigorating, empowering, meditative and so full of flaws that it’s perfect. There is nothing more revealing about yourself than a good run that leaves you with only your very own thoughts. Believe me: when I run, I sort out problems that I never knew I had. There is nothing more captivating than the very world that we live in as I explore it on my own two feet. It’s like watching life happen all around you, but it happens at your own pace.

There is nothing more satisfying to me than tearing out of the house at dusk and pushing myself beyond any limits I ever thought I had. Cancer does that. It can make you want to run around the world and see what you can do with yourself. And, in a way, running helps me put the sentence, “I am living with cancer” to work. To me, the words running and living are interchangeable. While the cancer may try to put some limits on my life, running helps to make some of those limits disappear. I plan to keep on running. After all, running is living and living is running.

I lost one of my best friends!

My name is Matt Ferstler and I am a Testicular
Cancer survivor and advocate. In January of 2008 I notice something different on my left testicle; for a year I kept pondering what it could be until one year later on January 23rd 2009 I mustered up the strength to find the answers! I remember that day; the office was cold and lonely and I thought no one knew the fear I had. Two weeks prior I had done research on what was attacking my left testicle and much to my surprise I self-diagnosed myself as having the C word. I lost it! In my mind only people who are 70- or over are diagnosed with cancer, I was 22 and invincible. So, back to the doctor’s office; as I waited and waited my world was shaking beneath me. I knew that in only minutes all this cancer talk would become a reality. I got the verdict around 10:30am that morning and at about 10:39am I was a passionate fighter. I knew right away what my calling was in life.
The following Monday I had my scheduled left radical orchiectomy in which I lost one of my best friends. It was a sad moment for me but also a new beginning. I took on the nickname that January of “single jingles” meaning one testicle.
Over the next year in a half I created a non-profit to educate young men about the importance of self-exams. It is my goal to spread the word about Testicular Cancer all awhile helping men along the way. TC is the number one most common cancer among men in the US ages 15-35. Scary huh! Then let’s start talking about it!
Single Jingles has created shower cards and education materials all because TC is 98% survivable if it can be caught early and TC self-exams are the best way to check for signs monthly. I am now 2 years in remission and God willing I will be for a life time.

Everything was going well until ... it wasn't.

When I was growing up I used to get in trouble if I used any form of the word “suck.” Well mom, some things just suck. Tumors suck, cancer sucks ... suck, suck, suckity suck. Everybody knows it. Up until my own experience, cancer hadn’t touched my life personally. I had only seen it portrayed on tv or in movies. Nothing about my cancer journey was really what I expected. I thought in chemo I would be miserable, vomiting, frail and bed ridden. But thankfully I tolerated it really well. Unusually well, I thought. I thought I would be eager to be done and back in the real world. The latter has proven to be the most difficult part.

It all began with an itch. I wish it was the figurative itch like an itch to travel around the world but instead this is the literal itch. Nonetheless, it was the beginning of an adventure. I’ve been known to take a midday cat nap and one fateful day I woke up scratching my legs and feet like crazy. After the itchiness persisted for more than a week I went to my primary care doctor who kept asking me about a rash that did not exist, did blood work that came back normal and sent me on my way to a dermatologist. Dermatologist’s diagnosis: eczema. Antidote: shorter, cooler showers, less soap and vaseline (lots of vaseline). I felt dirty. I felt gross. And I felt worse.

I only saw that dermatologist and his voodoo medicine twice before I turned 23 and lost my health insurance. Off to fend for myself I began to uncontrollably cough (usually in your face) and once I started it was difficult to stop or catch my breath and each time I would nearly vomit or pass out. I dreaded anything funny because laughing got the coughing fits started too. It became difficult to breathe while laying down flat and I usually had to sleep nestled in the corner of our couch or steal pillows when everyone went to work to create a pillow “teepee” to perch myself upright. I remember sending a text one night that said “I’m afraid this is going to be something I can’t handle or afford.”

Shortly after that text I found myself in the ER, my heart and lungs were surrounded by immediately life threatening amounts of fluid, a huge tumor in my chest and lesions in my liver. I was finally diagnosed with stage IV Primary Mediastinal Large B Cell Non Hodgkin’s Lymphoma. I started chemo immediately and all was going well until ... it wasn’t. I stopped responding to chemo. I was immediately put on salvage chemo (the first of which failed too) and shuffled off to have stem cell transplant. In conjunction with the stem cell transplant I participated in a clinical trial for Bexxar which made me radioactive (but not a superhero, I thought I should at least glow green or something). On 09/09/09 I finally heard the sweet word “remission.”

Since then I’ve been active in starting up the San Diego chapter of the I’m Too Young For This! Cancer Foundation for Young Adults, volunteer at the Leukemia & Lymphoma Society and active with other cancer non profits like Imerman Angels and First Descents. I’m really passionate about connecting with and advocating for young adult cancer survivors.

I thought being a cancer survivor and not a cancer patient would be the easy part. I thought life would continue as normal but now I would have a few extra battle scars and some cool stories. Being a survivor is really just the beginning.

Friday, July 8, 2011

The Beginning of a Long Road

Let's get it started, hah!
Let's get it started in here
Let's get it started, hah!

Black Eyed Peas, Let’s Get It Started, Elephunk 2003

I've been kicking mass for about 4 years now as a brain tumor patient and activist for young adults. I found the mAss Kickers Foundation while searching for pages on Facebook about brain tumors, hoping to find a group of people who understood what it was like to be out of the pediatric phase of their lives but not yet into the adult classification of the medical world.

In September of 2007, my life transformed from that of a “normal” teen to that of what I like to call a “frequent flyer” for hospitals. I had been experiencing chest pain accompanied by tingling, numbness, and an electric shock in my head on and off for about a year; the symptoms gradually accumulated after starting off with originally just the chest pain and occurred once every few months, then once a month, and finally multiple times a week to the point where I was worried about when the next attack would strike each day. The chest pain began waking me up from deep sleeps, and the electric shocks would zap out of nowhere, leaving me tired and confused with occasional headaches.

I went to see a cardiologist first because the chest pain was the most frequent symptom and easiest to link to a field of medicine, cardiology. The doctor had me wear a heart monitor and prick my finger for a month to check for heart problems and diabetes, both of which came back negative. The next test he ordered would change my life and eventually lead me to discovering mAss kickers: an MRI to check on the neurological nature of the tingling and numbness symptoms.

Two hours after I had my first MRI I received a phone call explaining that I had a brain tumor in my left frontal lobe that was about the size of a thumb (from the tip to the 1st knuckle) made of galglioglioma/astrocytoma cells. While I was happy to have a diagnosis, my family was freaking out! It wasn’t until a week later that we found out the tumor was benign, and this past year the specific cell type after a checkup MRI showed the tumor to be slightly more prominent than the previous screening.

Doctors couldn’t definitively link the tumor to my symptoms, now known as focal point seizures, and the location of the tumor was too close to speech and sight headquarters in my brain to do surgery and guarantee the successful elimination of the symptoms. Naturally, most surgeons don’t jump at the chance to operate on a benign tumor unless there is a dire need to, but I’ve always believed that the tumor plays a role in whatever produces my symptoms. After seeing several neurologists whose migraine/seizure medications knocked me on my ass for months at a time without reducing my symptoms, I found one in 2009 who took a personal interest in my case and vowed that her medicine would make a difference. Two years and 1,000mg of Keppra a day later there has been a huge decrease in my symptoms and I have a seizure once a month if that.

The mAss Kickers Foundation turned my perspective on tumors/cancer from embarrassment to pride! I didn’t want to let people know why I was missing school or always tired because my medical life just wasn’t “normal,” but since discovering the MKF I shout my diagnosis from the rooftops to spread awareness about statistics and treatment options. I love wearing my bright yellow TUMORS SUCK! t-shirt on casual days at school and handing out stickers to spread the mAss kickers message and attitude about putting up a fight to kick mAss. My mAss hogged my free time for over a dozen MRI scans, EEGs, weeks, and weekends in half a dozen hospitals - it doesn't get to take up any more time (unless it's for a checkup appointment haha)!

Being involved with and advocating for the MKF for me entails meeting amazing people, learning about other fantastic foundations/organizations, staying up to date with research, promoting events, and encouraging my community to get involved with us tough cookies who make up the mAss Kickers Foundation. Supporters of the mAss Kickers Foundation are funny, artsy, athletic, and knowledgeable patients/friends/family members who aren’t afraid to say that TUMORS SUCK! join us in the fight against tumors/cancers with a spunky attitude and take charge against mASSes of all types and sizes! This blog is the start (get the “Let’s Get It Started” intro now?) of me getting more involved and connecting with the tumor/cancer community out there in the world. Here we goooooooo!

Thursday, July 7, 2011

My lovely lady lumps

I don't like attention. I'm not the propagating type. But a breast cancer diagnosis challenged my concept of life and offered me a kind of purpose- to reach out to others. I am writing this and doing all I can to make "kicking mASS" a positive and growing experience.
Last summer, at the age of 30 I found a tiny lump in my breast. I was motioned through all of the doctor visits, mammograms, ultrasounds and even an excisional biopsy. All the while every medical professional along the way reassuring me with the words, "It's nothing. You're too young and healthy." When the biopsy pathology report was available I went to see the surgeon with my two young boys in tow. I was sat down in his office, not an exam room, and still failed to recognize that I was about to be delivered a big blow.
"They found cancer." It was shocking news, especially when all the doctors anticipated the tumor to be benign. The first few hours after diagnosis were difficult. I didn't know anything about cancer. The very word was synonymous with terminal, death. But I wasn't devastated or even angry. I was instead very driven to learn all I could and particularly interested in breast cancer in young women. I may have been blind-sided with the diagnosis, but I was not about to fight cancer blindly.
In a matter of weeks I was wearing a hairnet and an equally unfashionable gown, giving thumbs up to my husband from a rolling bed. I had undergone a bilateral mastectomy with immediate reconstruction and a sentinel node biopsy in the five hours prior.
I was staged at 1A. Although my cancer was invasive, it had not spread to my lymph nodes. I did not carry any known breast cancer gene mutations (BRCA 1, 2) and further testing done on the mass provided a detailed biology that determined that I would not benefit from chemo. I did not do radiation either. My only treatments were surgery and 5 years of tamoxifen.
In this past year, I have met many young women who have and still fight breast cancer. I am very active in our young survivor group, serving on the committee for the Pink Ribbon Cowgirls, a program of the Breast Cancer Resource Center of Texas. I volunteer my time with this local group to make sure that other women are afforded the same information, support and comfort I was given. My quest for the latest and greatest news on breast cancer is unending.
I am testimony to the importance of early detection. Be your own health could save your life.

Wednesday, July 6, 2011

Life As I Knew It Stopped: My Cancer Story

My name is Patti Murillo-Casa and I am a Cervical Cancer Survivor and advocate. In October of 2008, after having several symptoms and feeling very fatigued, I finally went to visit my GYN after almost 4 years of not doing so. Why did I not go sooner? The same reasons that many women have - we are too busy, we feel fine, there is no "need" to. I had been with the same partner for over 10 years, what could possibly happen to me? Well I soon found out that a lot can happen. Life as I knew it STOPPED!!

Here I was, about to enjoy life to the fullest, my husband and I had made so many plans after we both retired from the New York City Police Department after 20+ years of service as Police Officers. All those plans were NOT happening after my doctor hit me with the shocking news that I had Stage IIB Cervical Cancer. I thought, I'm finally retired, and now I'm going to die from cervical cancer? I had so many questions-- Where did it come from? How did this happen? Have they just given me a death sentence? C'mon I carry a gun and I'm a pretty good shot-- Can I shoot this intruder dead? So many questions to be answered, and not all the answers made sense. My husband and I left the doctor's office numb. Due to my lack of education and misconceptions of this disease, I was ashamed that I had cervical cancer due to HPV (the Human Papilloma Virus - a sexually transmitted infection). We did a lot of crying and a lot of hugging and I kept asking myself what did I do wrong to deserve this? I was about to start the fight for my life....

Being my tumor was too big I was not a candidate for surgery, so my treatments consisted of chemotherapy, external and internal radiation. I was going to get radiation five days a week for seven weeks, chemotherapy once a week for seven weeks, and if that wasn't enough, two treatments of internal radiation. The journey was long and difficult to say the least. It's something I would not wish on anybody.

On May 5, 2009, I got my PET scan to see if all of these treatments had worked. I had never felt so anxious before in my life. Thankfully, my tumor was GONE and there were NO cancer cells visible. My prayers had been answered, the nightmare was over!!!

Now I use my story and my experience to make women aware about this preventable disease and to not become a statistic. Currently, I am the New York Chapter President of Tamika and Friends, Inc. T&F is a non-profit organization dedicated to raising awareness about cervical cancer and its link to the Human Papilloma Virus (HPV). Cervical Cancer is preventable yet, every hour a woman gets diagnosed with cervical cancer and every 2.5 hours a woman dies from cervical cancer. We know where this cancer comes from - a virus (HPV) and we have the tools to prevent it. Know that you do NOT have to be ashamed if you have HPV. It is NOT the result of promiscuous sexual behavior, or being unfaithful to your partner nor does it mean that you will automatically have cervical cancer. HPV is the most common sexually transmitted infection. According to the Center Of Disease Control and Prevention (CDC) in the United States over 6 million people (men and women) get an HPV infection every year and at least 50% of the people who have ever had sex will have HPV at some time in their life. The good news is that for most people the infection is transient.

This disease takes away your identity, it changes your life and it affects the people around you and unfortunately, in many cases it can even take your life. No woman should die from this preventable disease or lose their fertility to cervical cancer. I have been cancer free for two years. It's still nerve wracking when I visit my doctor because the fear of the cancer returning is always there, but I try to keep a positive attitude and keep moving forward. This is now the norm for me, and God willing I will be cancer free for many years to come.

Sunday, July 3, 2011

Introduction by Eric Galvez, President mAss Kickers Foundation

Welcome to a New Group blog. A few of my friends decided to get together and combine forces on a unique new cancer blog. You will be exposed to different types of survivorship. Just thought it would be cool to see what different survivors were up to. The goal of the blog is to expose people to the different issues that survivors of different types of tumors/cancer have to deal with. We all have issues we have to deal with, but we all have what it takes to mount a unified counter-attack against these diseases. In the wise words of Sesame Street, We are different but the same. We will be posting at least once a month. You will find each of us has a unique story. WE ARE NOT VICTIMS! Here is my story as a video.

Please take a look around! We will be open to suggestions to improve the Group Blog.

Are you Ready to be a mAss Kicker?

We think ALL Tumors Suck! We believe a stronger community needs to be formed to more efficiently fight these diseases. JOIN THE MASS KICKERS ARMY! Content here will be provided by real people who have been affected by tumors/cancer. Any one can be a "mAss Kicker". When facing a new intimidating diagnosis it is easy to loose confidence. We've found that the "Right ATTITUDE" will help get you through a difficult time! Are you ready to be a "mAss Kicker?"