RESPONSE TO HUFFUNGTON POST ARTICLE about "Nonmalignant" brain tumors

To the Huffington Post, Dr. Bederson and Ms. Crow:


While I appreciate your raising awareness about brain tumors by publishing this story, I would like to express my concern with two phrases used in your article; "benign brain tumor" and "likening the tumor to a wart."

Benign Brain Tumor: Understanding Sheryl Crow's Condition 

As a former physical therapist turned nonmalignant brain tumor patient, I have experienced first hand the severity of these tumors. I am glad you reference the location of the nonmalignant tumor, but the long term effects of a nonmalignant tumor can greatly affect quality of life and this issue needs to be addressed.


 While the mortality rates for the medical treatment of nonmalignant brain tumors are comparatively low when contrasted with certain other types of tumors/cancer, the long term impact following treatment of these tumors can have significant lasting effects. This may include short term memory loss, coordination impairments, balance impairments, alteration in affect/mood, chronic pain, seizure disorders, visual loss, difficulty swallowing and a variety of other life-changing symptoms. Nonmalignant brain tumors can be life-threatening as well. People diagnosed with these tumors need long term follow up scans to be sure their tumors are not growing. Those whose tumors have been treated also need follow up scans to detect possible tumor recurrence after treatment.


 It is very common for medical professionals to dismiss a malady that appears to be not as serious as a "cancerous" tumor. As a medical professional, I realize the short term emphasis is on treatment of the condition. As a 6-year nonmalignant brain tumor survivor, I think it is important that medical professionals and the general public understand the severity of specifically nonmalignant brain tumors. As a medical professional turned nonmalignant brain tumor survivor, I urge you to consider the long term effects of a nonmalignant brain tumor before dismissing a "benign" tumor.


Please do not describe a nonmalignant brain tumor as a "wart". The long term effects on a patient can be quite debilitating dependent on the location of the tumor, plus any deficits that occur following treatment. There's nothing benign about any brain tumor!


I sincerely wish Ms. Crow luck in her journey with this disease and her recovery.


Eric Anthony Galvez DPT
6 year meningioma nonmalignant brain tumor survivor
Founder, President mAss Kickers Foundation

Survivors & S'mores

The original mAss Kicker himself

San Diego - Mission Beach - May 25, 2012
What do you get when you combine an evening of sand, Survivors & s'mores? The 1st Annual YACS* Bonfire & Soiree, of course!


Our Soiree came complete with an amazing all-star lineup of cancer rockstars! Not only were we lucky enough to have Jenna Catalona from First Descents in town with the FD Mobile, but Eric Galvez, founder of mAss Kickers Foundation, Brandon Bethea, founder of Fin Forward, Amanda Hitt, founder of IAP4P & Trevor Jones, founder of Flex Watches all shared in the Survivor love... not to mention an eclectic group of Survivors, caregivers & advocates representing various Survivor organizations such as Stupid Cancer, LLS, Relay For Life, Keep A Breast & Young Survival Coalition.


Some of us have known each other for years, while some of us were meeting for the first time that night. Either way, regardless of our unique backgrounds, diagnoses or personal connections to cancer, we all came together to make friends, spread awareness & enjoy yet another successful San Diego Survivor event!

A beautiful Survivor sunset

There's something incredibly empowering about being in the presence of this many fearless, genuinely positive young adults who are all 100% committed to fighting cancer & celebrating Survivorship... it fills you with an energy that you can't help but share with everyone around you. Our bonfire was exactly that... the s'mores were just icing on the cake! :)


Check out the First Decents | Flex Watches video from the event!


* YACS = Young Adult Cancer Survivors :)

"Let's Kick it!" 2012 Charity Kickball Tournament recap

 San Diego, CA - Liberty Station. May 19, 2012 mAss Kickers Foundation hosted the inaugural mAss Kickers Foundation Charity Kickball Tournament. The event was created by four friends in the San Diego area that wanted to create a unique and fun event to support the efforts of mAss Kickers Foundation. The event was organized by Lyman Ng, Brent Glova, Joyce Tam, and Eric Galvez. With little event planning experience, the team was eager to attempt to create the event last year. But due to busy personal schedules, the event was difficult to get off the ground. The addition of Joyce Tam finally got the ball rolling and brought much needed event planning experience and structure to the table. We wanted to create a fun event to support newly diagnosed patients and our loved one affected by that diagnosis. mAss Kickers Foundation prides itself on creating unique events! Every summer, we partner with Hell Survivors Paintball Field in Pinckney MI to host our Annual TUMORS SUCK! Paintball Benefit. Eight San Diego based teams participated in the inaugural kickball event. Teams were encouraged to come up with their own unique team names. These are the teams/team colors:

• Sexual Chocolate - Burnt Orange
• Ball Busters - Red
• KickaDoodleDoo -Kelly Green
• The Jenemies -- Carolina Blue
• All-Stars - Lime Green
• SoCal Riot - Own Jerseys (Daisy Yellow)
• Self Esteem Busters - Grey
• Menace II Sobriety - Pink
• Event Staff - Orange/Gold

The morning of Round Robin group play determined the seeding in the afternoon competition. It was also a time for players to reacquaint themselves with their favorite elementary school reccess past-time. The Urban Eats food truck stopped by at lunch to provide delicious community oriented gourmet food for the event! The intensity of the afternoon games was heightened after the announcement of Individual Championship P.I.M.P. (Pugilistic Individuals Masskicking with Pride) Cups. The teams playing for the Championship and the Consolation Titles were: The Ball Busters-SoCal Riot and All-Stars-Sexual Chocolate. Congratulations are in order for the winners of the 2012 mAss Kickers Championship P.I.M.P. Cups, the SoCal Riot. Sexual Chocolate won the Consolation bracket! Everyone had a great time and we look forward to hosting this FUN event next year with a little more experience under our belt!

Special thanks goes to Cynthia Comacho of the Cabrillo Rec Center, Urban Eats, CreateMyTee, Joey Evans, Aaron Lebsack, Amanda James, Gabby Penn Farmer, Marie Pancotti, Lorraine Painko, Athena Feinauer, Mark Feinauer, and Jaime Schnable.

Inaugural mAss Charity KickBall Tournament 2012

We've learned that tumor/cancer survivorship needs a little more "attitude", AKA "thrivership."  mAss Kickers Foundation (MKF) was born out of the necessity to supply those affected by tumors/cancer with that attitude.  MKF has grown leaps and bounds since we were created, but we still want the newly diagnosed tumor/cancer patient to feel a little less scared after hearing difficult news.  One of the first things a newly diagnosed tumor/cancer patient loses is confidence.  To make up for that loss, we figured out that Attitude = Confidence.  More importantly, we learned that an individual's confidence can be strengthened though UNITY.  We decided a Charity Kickball Tournament would be a fun way to support newly diagnosed patients.  We will be hosting this event at Liberty Station in San Diego, CA on 5-19-12 from 8:30AM-4PM.   Registration is at 8:30.  Games start at 9:30 with round robin play to determine seeding. Championship bracket play begins after lunch.  This will be the inaugural event, so we need your support to ensure it's success. 

Please consider a tax-deductible donation in order to support our efforts to assist everyone affected by a new tumor/cancer diagnosis. FOR MORE DETAILS ON HOW TO SUPPORT THE MKF KICKBALL TOURNAMENT, CLICK HERE!

ANNOUNCEMENT: ++All teams will break for lunch between 12:30-1:30PM. Our featured food truck My Urban Eats will be stationed in the parking lot from between 11:30-1:30PM to serve hungry players and participants. ++Urban Eats is a community oriented Gourmet Food Truck focused on "Fresh Affordable Fare". Urban Eats delivers honest food at a good value, utilizing local ingredients and enterprising healthy consumption.

If you can’t make a donation at this point, help us reach our goal by sharing this page on Facebook and Twitter!  Please send a personal e-mail sharing this page to the friends who maybe be interested in supporting our cause. Thanks so much for your generosity! About mAss Kickers Foundation mAss Kickers Foundation takes pride in providing tumor/cancer patients & their loved ones with a "puglistic" attitude to fight this intimidating diagnosis! Together, we can build a strong support group and defeat these horrible diseases. We call it "Tumor/Cancer Thrivership with Attitude."

Look For the Good

Things that I try to live by and integrate into my daily life to create positivity. You have the option to dive, survive, or thrive. Choose to thrive.

That Damn Freckle... PART II

August 1st I proudly celebrated my 3-year "cancer-versary"... 3 years since melanoma entered my life, 3 years since my surgery & 3 years of being cancer-free! I've been waiting for the right time to tell you PART II of my story... well, it's time.

Cancer changes you... PERIOD.

Post-surgery: My body was clear of any cancer, so I was "ok"... right? I could just go back to my life like nothing happened... right? Everyone congratulated me & simply moved on with their lives. Meanwhile I was stuck in a dark, lonely, unfamiliar place. At age 30, I was already a statistic... I had had cancer. Where did that put me in the scheme of the world? Was I supposed to feel normal now? And, what the hell is normal after cancer anyway?

Was I a victim or just unlucky? I didn't have to go through chemo or radiation because it was stage 1 cancer, so I didn't feel "worthy" of people's pity. But, I had still received a cancer diagnosis & I still had to live with the fact that there was a 1 in 20 chance that damn freckle could pop up again in the same place, or worse, internally... so I did feel i was entitled to a sense of "why me?"

Would I live in the dark the rest of my life? I lived in sunny San Diego & suddenly I couldn't just enjoy the sun like everyone else. I was pissed off & paranoid. Why can't I layout at the beach? How much sun is too much? Will I be pale forever? As vain as it sounds, I didn't realize how much those beloved tan lines were a part of my everyday life & my self esteem until that option was taken away from me.

Over the last 3 years, however, I've been coming to terms with all this & I have found ways to shed a positive light on my cancer experience. I've discovered & immersed myself in amazing organizations like American Cancer Society Relay for Life, Stupid Cancer & mAsskickers Foundation (the brains behind this blog). I've had the honor of meeting the most kickass group of young Survivors & cancer advocates & I have gained so much perspective & inspiration from their friendships... you guys know who you are!!

I've allowed myself to heal not only physically, but emotionally as well. I realized that what I went through was worthy of all the anger, fear & sadness that followed. I no longer feel the need to downplay the fact that I had stage 1 cancer & I've found strength in knowing that I beat it! I feel united with anyone who's ever heard the words "you have cancer" & I have made it my personal mission to stand by them, support them & honor them in every way I possibly can. And, most importantly, I have embraced the fact that thanks to that damn freckle I AM A SURVIVOR & I am damn proud of it!!

Cancer changed me... PERIOD.

______________________________________

"That Damn Freckle... PART I" - July 13, 2011

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 asymmetrical, 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 worrysome 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...

Guest post: Dr. Tanya Kormeili

TIME TO KICK SOME MELANOMA MASS!

May is Skin Cancer Awareness Month. So -- what makes Melanoma such a dangerous and unique cancer?

The answer is this: Melanoma kills young people who can be otherwise healthy. It doesn’t care if you are Black, White, Middle Eastern, Latina or Asian! That’s the dangerous part, and it’s unique because we can often see it with the naked eye, and it’s curable. So this is one cancer we should be talking about!

Let me get medical for a second: Melanocytes, the pigment cells on our skin, are actually made near the primitive spine of the embryo, and travel all the way to the skin. Once they reach the skin, they are in charge of producing the pigment in our skin, which you may have heard of - called melanin. Ethnic people produce more melanin, but everyone has melanocytes in about the same number.

So, what happens when these cute pigment-producing melanocytes go bad? The answer is the scariest type of skin cancer called melanoma!  The same way those cells found their way to the skin as an embryo, they can start to spread its way back through the body and fill other organs with tumor cells.

There is a LOT we can do about melanoma.  Here is what you can do to fight the good fight:

1. Protect yourself and the people you love from the sun. UV rays can cause DNA damage to the melanocytes and turn them “bad” (cancerous). I’m not popular for saying “no tan is a healthy tan”, but it’s true! Slather SPF lotion on and find shade if you’re in the sun. Got a loved one? Remind them to do the same.

2. Look at your body, especially any moles! Learn the ABCDE’s of melanoma and spot any new or changing moles: you’re looking for Asymmetry, Border, Color, Diameter and Evolving changes (for more detail on each of these, go here). Look at your loved ones too and share what you’ve learned. There are angles of their body that you can see (such as their back) that they simply can’t. If you check your bodies frequently, you’re more likely to notice changes as they happen, or a mark that wasn’t there before.

3. Get a skin cancer check!  A skin cancer check with an expert is quick and easy, and is part of a good health regimen.  Have a qualified dermatologist look at your skin for any suspicious lesions and those “hard to reach” areas!

Melanoma is amazing in that it is 100% curable if diagnosed early and treated properly. Unfortunately, as we all know, most cancers don’t give us this chance. We have an opportunity here to catch this cancer before it can spread rapidly and leave the skin, or metastasize to another body part. Let’s catch melanoma while it will still respond to treatment. Or, as we say at MKF, let’s kick some mAss, shall we?!

Dr. Tanya Kormeili is an internationally recognized dermatologist practicing in Santa Monica.  She is an Assistant Clinical Professor of Dermatology at UCLA’s David Geffen School of Medicine and Cedars-Sinai Medical Center and a proud supporter of mAss Kickers Foundation! Please visit www.DrTKDerm.com for more information on melanoma and how to prevent it.