Saturday, December 31, 2011

Wrapping Up 2011 - Diagnosis Reflection



As the year comes to a close, I thought I would share this video as my last MKF Group Blog post of 2011. The video touches on my mAss kickin' journey since my diagnosis of a brain tumor in September of 2007 and how in the grand scheme of things I am changed for the better. The biggest change since my diagnosis was shifting my mindset from the underdog perspective to using what I have experienced and learned to help others - thinking bigger than just my individual diagnosis has made a world of difference in my perspective and attitude.

After re-herniating and rupturing discs in my lower back last fall and eventually having surgery to repair the damage in the spring, I expected 2011 to be a year dedicated strictly to recovery. However, my year of recovery turned into a year of discovery. Although I didn't even realize it at first, I spent my newfound free time away from sports and socializing reevaluating myself.

Key thoughts from 2011:

- You only get once chance to get things right; make this life one worth living

- Life is a class, make sure you put to use what you're learning (outside of the classroom)

- You can always turn a negative situation into a positive. Things can always be worse, much, much, worse

- Everything happens for a reason, even if that reason isn't apparent or doesn't become apparent until years down the road

Wednesday, December 21, 2011

Navigating Cancer, what's that?



Mumford & Sons, Awake My Soul
Sigh No More 2010
Lend me your hand and we'll conquer them all
But lend me your heart and I'll just let you fall
Lend me your eyes I can change what you see
But your soul you must keep, totally free


Navigating Cancer is a community of cancer survivors, caregivers, professionals, friends, and family who support one another, share their experiences, discuss relevant topics, and contribute helpful resources. The MKF Group Blog received the Inspirational Cancer Blog award recently, and is now listed as a blog reference source for: brain cancer, breast cancer, cervical cancer, testicular cancer, thyroid cancer, and lymphoma information and support. From what I have gathered, like many other tumor/cancer resources, Navigating Cancer’s main function is to develop support systems and provide situation specific information.


From a community standpoint, Navigating Cancer is home to over 740 users with 35 diagnosis specific groups, not including subgroups. Users can join groups that are specific to their needs and interests where they have the option of participating in discussions with other patients, survivors, and supporters. These groups beyond diagnosis specifics range from patient empowerment to support for the supporter, nutrition during treatment, and more.


Most of the resources available through Navigating Cancer can be found in the Navigating Cancer Library, which focuses on three stages of information: understanding, treating, and monitoring. These resources are organized by diagnosis and include articles as well as links to other websites and blogs which are added by users, groups, and clinics. Users can also keep track of their symptoms, side effects to treatment, and progress in an organized fashion. There is even a handy calendar option where users can keep track of their appointments. Navigating Cancer is pretty cool!

Bake Sale Update

Coldplay, ParadiseMylo Xyloto 2011




This could be

Para-para-paradise

Para-para-paradise




A quick follow up to the original bale sale post...
I tried videotaping the mob of students that rushed our table of baked goods, but my camera battery unfortunately did not have enough juice left to take a video. I did have enough battery left to snap this snazzy picture of my friend Nick before the mob descended though! Imagine how excited puppies get when you offer them a treat (they jump up and down and flip out). My peers act similarly during bake sales..haha! The bake sale took place around 10:30am, but the early morning timing (anything earlier than 1pm is early for high schoolers!) did not stop students from emptying their wallets for a good cause and filling up their bellies with sugary delight. After they made their purchases, they went back to class, hyped up on sugar and armed with TUMORS SUCK! stickers to put up around the school. My Dad made his famous red velvet cupcakes with cream cheese icing which were a big hit along with chocolate chip cookie bars and double mint chocolate chip cookies. With the help of a few friends and my Dad, we baked our way to earning an honorable profit for my fundraising page in honor of the Holiday Drive.

Saturday, December 3, 2011

"Breaking Away"

My name is John Abbate.
I was a junior at Indiana University in Bloomington, Indiana. I was a "good" student majoring in secondary education...and was very involved in the Little 500 bicycle race...maybe you have seen the movie "Breaking Away"...well,it is sooo worth seeing.
One night in late February of 2007 I was at the library late again (class & riding my bike...etc cut into my day) I was walking from my car to my apartment, slipped on ice fell backwards & hit the back of my head. I did not think much of this,I kind of laughed it off and was feeling concussion symptoms, but not at all what was really going on. Feeling a bit woozy or concussed,I did not go to bed right away.

Waking up the next morning was not too bad...I had a headache, but I went along with my day. Legend exists among some family & friends that I rode like 100 miles, but that is BS...I rode 30 miles & felt better actually. Slowly, but surely the headache came back. Friday turned to Saturday & I felt weak...too say the least...I tried riding the bike,usually that was a form of therapy for me,well I rode a bit & finished an easy 15 miles,but felt awful. So, I wake up Sunday, I am really struggling by now manage a shower then I drove myself to the E.R. (I did not tell my roomies...sorry guys)

I have a few tests ran on me & long story short they had found a low grade astrocytoma on my brain stem,some of the cerebellum that had been growing for 6 or so years.  (Dr's always told me symptoms were sinus related) The walnut sized tumor was smack dab in my fourth ventricle. So, my brain was essentially drowning in CSF (cerebrospinal fluid) and I had two neurosurgeons saying if they did not operate within a week,I would possibly comatose & die. Anyway, the fluid that should have been draining was backing up because the fall had "jarred" the tumor blocking the CSF flow.
This is heavy stuff for a 22 year old.  Well, talk about a quick decision. I decided on a different Doctor @ Northwestern in Evanston, Ill.

March 2nd of 2007 I had surgery, stayed @ the R.I.C. (Rehabilitation Institute of Chicago) for almost 3 months. I came home June 15th of 2007 as an entirely different person...well, physically anyway. (be your own advocate, try not to be ignorant to warning signs, I kind of was) In August of 2008 I managed to get back to school @ a local campus...IU Northwest. Fast forward to December of 201, it has been a rough road to say the least,I am almost done with school and am already thinking about grad school(I am excepting donations...jj...ha) I have accomplished some pretty "cool" things in my wheelchair and I am just getting started/ trying to break away from stereotypes that disability is a "bad" word.

Thursday, December 1, 2011

2011-2012 Winter Fundraising Drive








THANKS FOR MAKING 2011 A GREAT YEAR FOR MASS KICKERS FOUNDATION! We are planning exciting, fun events for continuing our campaigns in 2012.  We are also planning two new unique events in 2012. See our awesome plans below, but WE NEED YOUR HELP!! Organizing these super fantastic things cost money and we need some to keep up the mAss Kicking momemtum going!  

We are hosting 4 major events in 2012:

Spring 2012 - "The mAss Kickers Charity KICKBALL Tournament" in San Diego. Have fun helping us Kick some mAss! Spaces are limited to 12 teams. Look for updates on the website soon!

Summer 2012  - in San Diego: "The RIC, Research Is Cool Seminar" for patients and loved ones! There are a lot of organizations that support tumor/cancer research. We want people to understand it AND use it! The seminar explains what research is, how to participate, and the benefits of participating in research studies. THIS WILL BE A UNIQUE TAKE ON RESEARCH! Website coming soon!

August 2012 - "TUMORS SUCK PAINTBALL BENEFIT", PINCKNEY, MI @ Hell Survivors Paintball Field http://www.tumorssuckpaintball.com

October 25 - in San Diego "International TUMORS SUCK DAY Celebration" Let the world know you think TUMORS SUCK! PLAN A GET TOGETHER WITH YOUR FRIENDS LET THE WORLD KNOW THAT TUMORS SUCK! https://www.facebook.com/pages/Tumors-Suck/145877928814836?sk=wall

We have a very ambitious 2012 planned and we need your support to host these events! Please consider a tax-deductible donation to mAss Kickers Foundation. The funds raised from this drive will support our 2012 activities AND fund tumor/cancer related research.
PLEASE BOOKMARK OUR WEBSITE: http://www.mAssKickers.org HELP US KICK SOME MASS IN 2012!!! JOIN IN THE FUN!  MAKE A DONATION AND WE'LL HELP YOU CREATE YOUR OWN PAGE! PLEASE PASS THIS ON!!!

Wednesday, November 30, 2011

Let's Rai$e the Roof This Holiday Season!

Two Door Cinema Club, Something Good Can Work
Tourist History 2010

You gotta step up your game to make to the top.
So go!
Gotta little competition now.

Tis the season to be jolly, tra la la la la, la la la la. Do you know what would make me jolly? If you joined in the MKF holiday giving drive by hosting your own bake sale or donating online! Check out the MKF Holiday Drive page, read what each mAss kickin' fundraiser has to say, watch their videos, and pick a member's page to support!

Last winter I held the first ever MKF bake sale at my high school. Hungry high school students loved the homemade cookies, brownies, and red velvet cupcakes - the bake sale was a huge success. The support from students was so overwhelming that we sold out in less than seven minutes! This year I’m hoping to double our profits, with the incentive of TUMORS SUCK! stickers for every purchase or donation of $5 or more. The bake sale will take place on December 9th, so stay tuned for pictures, videos, and other updates regarding fundraising progress!

Although I have a feeling that the majority of my fundraising this winter will come from my bake sale, I would love to have some support from everyone else out there. The more, the merrier! Bake sales are easy to arrange, and you can always save some of the goodies that you bake to eat for yourself. Check back in on here or on my fundraising page in two weeks for an update!

Thursday, November 17, 2011

The Island of Misfit Mos 2011

In honor of Movember, a crack commando unit was formed when they each were separately affected by a tumor mass that they were not willing to accept. In 2010, these men promptly joined forces to combat these horrible diseases. Today, they survive as soldiers of fortune. If you have a problem, if no one else can help, and if you can find them, maybe you can hire... The Island of Misfit Mos. (Cue the A-team theme song...)

JOIN US! ADD YOUR PICTURES ON THE WALL OF THE FACEBOOK GROUP! WE HAVE MEMBERS OF VARIOUS CANCER ORGANIZATIONS REPRESENTED ON THE ISLAND WITH A COMMON PURPOSE TO FIGHT ALL TUMORS AND CANCER... IS YOUR ORGANIZATION REPRESENTED?

Tuesday, November 15, 2011

Sunday, November 13, 2011

Seen Through My Eyes: Reflections on the YAA Conference

From the moment our plane touched down in Austin, Texas, I experienced a busy and meaningful time of connection with the Young Adult Alliance (YAA)! I observed and participated in this conference with unique eyes as I live in Calgary (Alberta, Canada) with my (Canadian) husband, Mike; am a supporter to him and the other young adult cancer survivors I’ve met; and am also an advocate for young adult cancer awareness. Although it sounds cliché to say it, both my husband and I were very honored to attend this annual meeting and hit the ground running with new-to-us faces, organizations, and a fervent zeal that was refreshing to engage in with others.

After a long day of traveling from Ottawa but a beautiful last flight, we arrived at the Omni Hotel in downtown Austin for the event. I did what any self-respecting traveler would do after a long day: tried out the bed!

It was nice, let me assure you.

After exploring the hotel we decided to grab a late-night dinner, chatting with a few people around the hotel but mainly getting excited about the event officially beginning soon.

Our initial impression of Austin was that it was a fun, thriving, “young” city, and the Omni Hotel left a similarly positive impression on us both as we enjoyed some food (fresh fish tacos! When in Rome…) and hit the hay for a full upcoming day. Wednesday began, after a short morning workout in their spacious gym, with our favorite meal of the day downstairs: breakfast! I’m always on the lookout for accommodations with healthy breakfast foods, and the Omni Hotel did not disappoint! I was thrilled to see steel cut oatmeal, fresh fruit options, strong coffee, my favorite nut butters, and even fage yogurt alongside the hot options like omelettes, waffles, and French toast. A healthy, delicious breakfast makes for one happy supporter!

Speaking of options, throughout the conference I was very pleased with the amount of optional breakout sessions that have were available to attendees to choose from and attend. Not wanting to miss any opportunity for learning and new information, my husband and I went to “How to Speak to the Media” by Jen Mills, Emily Peterson, and Amy Berry. It was jam-packed with information about public relations, including very practical “how to” moments with the opportunity to write down your own strengths, weakness, opportunities, and threats as a company or individual. It also highlighted the elbow work that has to go into solid PRC for a company – it’s labor intensive, requires hard work, and thrives best off of building into relationships with the media around you. This was extremely helpful for my husband with his new job at the Tom Baker Cancer Center in Calgary as well as for me personally as I begin to re-establish my job as a mobile personal trainer. I especially liked how engaging the session was, cancer or not, because it was practical and gave me tools to walk away with as I left.

The second session we attended and loved was entitled, “R2iSMASH: Tapping the Social Web to Reach Potential Members and Donors.” This session, run by Brock Yetso, Craig Lustig, Chris Chodnicki, and Samantha DeVita, was also full of relevant information because in the new field of young adult cancer, learning how to engage with and utilize social media goes a long way. Those affected directly (young adult survivors) are plugged into sites such as YouTube, Facebook, and Twitter, and knowing not only how to work those sites but how to engage in and build a community using those sites is extremely beneficial. Some key points to share that benefit everyone using social media:

1.) Get your house in order. In other words, perform a social media “audit” on yourself or your company in order to know how much of an influencer you are and whether or not you are truly engaging with your followers. (Helpful tools include Google Analytics, Hootsuite for Twitter, Facebook Insights, Klout, YouTube Insights, and Radian 6.)

2.) Publish audience-centered content that’s relevant. If the information isn’t applicable, then it doesn’t really matter! We all want to be spreading news as advocates, but we have to make sure what we’re spreading is information that those in the community want to hear. And lastly,

3.) Engage members and build relationships with influencers and brand advocates. Although the workshop was set up with a company’s social impact in mind, the information can certainly be brought to a personal level too as most of us today are using many, if not all, of the social media platforms out there. The truth is that if we are pumping information out, updating pages, and happy with the number of “likes” or “retweets” we’re seeing, if we’re not intentionally engaging with the social communities we’re helping to create then no true change is going to come from it. Those relationships must be maintained throughout the year and grown so they can take off on their own, member to member.

I was also reminded that it’s important to use each resource to its fullest advantage. For example, Twitter might be a great place to repost fast-acting, timely news targeted toward your demographic, while Facebook might work better for people posting photos and engaging with community events through your page. At the same time, a website or blog might lump them all together while streaming videos through YouTube is probably the most effective place to post film.

There was so much to take in, and as both a supporter and an advocate I got a lot out of the sessions because cancer or not, they related to me personally. I was also encouraged to see the positive benefits of what being intentional with technology can bring and reminded of how we can really use it to affect greater change than we perhaps ever could have before.

The power of social media: “Movember” in action.

From large group sessions to breakout workshops, from strolling the streets with new friends to networking over drinks, I learned so much throughout this conference and am so thankful we were able to interact with this thriving, passionate community in the United States. It’s a reminder to me of why Mike and I do what we do – why we choose to be involved and how we can be more effective in our involvement. I savored every bite, appreciated every moment, and enjoyed each experience and left with a sense of renewed vision and purpose in my role as a supporter and fellow advocate.

Learning, living, and growing,

Bonnie

Sunday, October 30, 2011

International TUMORS SUCK! Day 2011


Counting all different ideas drifting away
Past and present they don’t matter
Now the future’s sorted out
Watch her moving in elliptical patterns
Think it’s not what you say
What you say is way too complicated
For a minute thought I couldn’t tell how to fall out

Phoenix, 1901, Wolfgang Amadeus Phoenix 2009


I tried to do my part in celebrating and spreading awareness about International TUMORS SUCK! Day on October 25th by passing out stickers to friends and faculty at my high school. Last year most of the teachers declined the opportunity to wear a sticker and support the mAss kickers of the world, probably because they disliked the use of the word “suck.” But, this year I think that the teachers recognized the fighting message within the campaign, and they came up to me and other students asking where they could get stickers! It was nice to see such a wave of support from my school – people had fun taking pictures with the stickers and some have kept the stickers on their blazers, covering my high school's official seal haha. Most high school students don’t have to stop and spend time to think about how tumors/cancer affects their lives or others; I choose to, and am lucky to be surrounded with such supportive friends and family members who agree that TUMORS SUCK! I have a pretty cool plan for a photo next year, but it’ll take about 40 people to pull off what I have in mind..stay tuned!

Tuesday, October 11, 2011

What is Hawktober? By Matt Cotcher

Hawktober is a brand new organization that shows some attitude while raising brain tumor awareness: Hawktober was officially formed in 2011 and features supporters wearing Mohawks every October to bring more attention to brain tumors, those diagnosed with them, and survivors.

I like to say that supporters ‘Rock da’ Hawk’, because it conveys the spirit necessary to combat such an intimidating diagnosis. Patients, survivors, family and friends are showing off Hawks in support of the movement. In our first week, Hawktober has rallied support from coast to coast and even in Australia!

Hawktober was founded by a pair of guys that have taken survivorship to a whole new level – one they like to call ‘thrivership’. Certainly we understand the importance of raising awareness; after all, my diagnosis came as a complete surprise. It required such quick action that learning about the tumor, surgery or recovery wasn’t a viable option.

One of Hawktober’s goals is to give people what is often lacking in the drama of a life-altering diagnosis – more information and a better understanding of treatment options. With all the technology and information available, Hawktober will help folks that find themselves in similar situations be better prepared.

HISTORY

One of our co-founders, Eric Galvez, has been passionate about raising brain tumor awareness since his diagnosis in 2005. In an ironic twist, Eric went from being a physical therapist to having his coworkers provide him with therapy after undergoing surgery and radiation.

After rehab, Galvez started the Tumors Suck campaign and subsequently mAss Kickers Foundation. Then one of his friends, Al Chan, suggested the idea of rockin’ hawks to promote brain tumor awareness. I met Galvez online in 2007 while researching survivorship. Then, earlier this year, Galvez shared the Hawktober backstory with me and encouraged me to run with the idea. And just like that, Hawktober is rockin’ da Hawk around the globe!

THE 2011 CAMPAIGN

At the time of this writing, "Hawktober 8th", we’re only one week into this year’s effort. Between a rapidly growing Facebook page and an interactive website, it’s been a fun week of collecting photos of supporters Rockin’ da Hawk!

The organization is based in Austin, TX where Floyd’s 99 barbershops is supporting the effort. Each week in Hawktober, Floyd’s is featuring “Mohawk Monday” where supporters receive free Mohawks.

Beyond Austin, there are already supporters from Massachusetts to California clipping, shaving and styling their way to support family, friends and themselves in the spirit of Hawktober.

THE FUTURE OF HAWKTOBER

While I’m encouraged and overwhelmed by the amount of support Hawktober has received, I recognize we’re just getting started! Certainly, mohawks are attention-grabbers and we plan to use that to our advantage as we work to promote our goals and awareness.

Beyond fun pictures of supporters that Rock da’ Hawk, I’m always open to exploring partnerships with other related organizations. Awareness, whether it’s of brain tumors or breast cancer, is a responsibility that we all share, and Hawktober is always happy to help in the job.

In addition to promoting awareness and our patient support efforts, once we attain our 501(c)(3) status, we will target partners that research causes of brain tumors. I firmly believe that we need to direct our efforts towards finding causes in order to help find cures. With the variability (tumor type and location) of brain tumors, every ounce of support is needed and appreciated!

Matt Cotcher

Co-Founder, Hawktober

Thriving since 2007

Thursday, September 29, 2011

[Guest Post] Fighting Cancer With Physical Fitness

By: David Haas


Most people are aware of the health benefits of physical activity. Exercise controls weight, fights disease, improves mood, boosts energy, promotes sleep, sparks sex life, and is often just plain fun. Despite all this, exercise -- even going for a short walk -- is usually the last thing someone with cancer wants to do, whether they have a common and very treatable cancer like skin cancer or a rare disease like mesothelioma exercise can help.

Coping with an initial cancer diagnosis -- followed by the harsh treatment of surgery, radiation, or chemotherapy -- can destroy a person’s sense of control. The physical, psychological, and emotional barriers of cancer can overwhelm patients. Cancer fitness programs aim to break the barriers for cancer survivors, giving them back a sense of control. And the research on fitness for cancer survivors is promising.

Current Research

One Canadian organization, the Alberta Heritage Foundation For Medical Research (AHFMR) has funded research on the effects of exercise on cancer survivors. Led by Dr. Nicole Culos-Reed, the study centers on patients who have completed their last cancer treatment but remain on long-term hormone therapy.

Culos-Reed’s study, which examines patients with breast and prostate cancers, focuses on the relationship between exercise and emotional factors like stress, depression, and personal control, as well as physical factors like bone density. The primary goal is to change the cancer survivors’ lifestyle and improve their quality of life.

Past Research

According to the National Cancer Institute (NCI), an agency of the United States Department of Health and Human Services (HHS), extensive studies have been conducted on the relationship between exercise and various types of cancer. Colorectal, breast, endometrial, lung, and prostate cancers are just a few examples. The research suggests that exercise has a protective effect, reducing the risk of certain cancer types. Physical activity has also been shown to positively affect metabolism, inflammation, immunity, and other factors. Generally speaking, exercise enhances a patient’s sense of overall health and well-being and improves quality of life.

Fitness Benefits

Exercise offers many of the same benefits for cancer patients as for the general population. And it does not matter whether someone is facing highly treatable skin cancer or mid-stage mesothelioma treatment. Mild or moderate activity is possible for just about anyone, and it can help patients better cope with treatment or after-care.

Along with weight and diet, physical activity is a key component of energy balance. It can greatly influence a cancer patient’s ability to fight the disease and treatment side effects. Doctor-approved fitness activities, from cancer treatment center programs to personal exercise plans, can go a long way in giving them back a sense of control and well-being.

Wednesday, September 28, 2011

Tribute blog - Erich Zeeb!


I've been roaming around,
I was looking down at all I see
Painted faces fill the places I can't reach
You know that I could use somebody
You know that I could use somebody
Someone like you and all you know and how you speak

Kings of Leon, Use Somebody, Only by the Night 2008

My tribute is to Erich Zeeb, a super star mAss kicker who is almost twice my age with half of my maturity ;). Erich was diagnosed with a thalamic astrocytoma on July 5, 2008 and thrived through chemo and gamma knife surgery. He has taught me to never take anything too seriously or worry about what might happen. He currently lives in Colorado Springs where he trains at the U.S. Olympic Training Center for the Modern Pentathlon (Fencing, Swimming, Equestrian Jumping, Shooting, and Running). Erich has promised me numerous times that he’ll send me tickets to watch him in London at the 2012 Olympics hehe and I’m going to hold him to it. Sometimes he calls me his inspiration, but he is the real inspiration for getting back on track to participate in the Olympic Games after treatment and kicking mAss.

A life changed for no known reason,
A plan that had to be altered because of the season;
The season of cancer,
A time for the man to let the leaves fall.

The man received chemo and gamma knife,
The improvement was alright;
The man's doctors rocked,
Unfortunately, the treatments almost cleaned his clock.

Could the man handle this season of his life?
Could the man handle why he was faced with such adversity for no reason?
Could the man accept that the nurse helped his mother pick out the hearse?
Could the man fight against the temptation to ask his mother tosmuggle a gun inside the hospital within her purse?

Autumn ended just as fast as his life tried to dial one last call.
As he went to press the button to say goodbye, someone picked up; someone better than us all.
The call was to a friend from above,
Someone who knew that this man was full of love.

As family members planned a funeral,
The man sacrificed Heaven for just one more chance at being a juvenile!
A man with a brain tumor,
A man who rallied against a stormy season of his life and inspired me to fight for a cause.

Tuesday, September 20, 2011

Inaugural FD First Wave Camp 2011





This past week was amazing!  I had the privilege of participating in the inaugural First Descents Surf camp (First Wave) in Santa Barbara last week.  2 years ago, I participated in my first White Water Kayaking Camp in Glacier National Park, Montana.  I was hesitant to participate in another First Descents camp because I was afraid of tarnishing the memories of my first FD experience.  I was completely wrong.  New memories and adventures were created with a new group of friends in a new exciting adventure.

Before my surgery in 2005, I was just starting to get into a new hobby, surfing, in a new city with new friends.  I'd wake up early to go surfing before work, and found myself so relaxed the whole day.  A few months after I established my routine, I was diagnosed with a golf-ball sized brain tumor between the brain stem and cerebellum.  The new hobby that I was just learning to love was suddenly taken away!  Within a month I had:
  1. an eight hour brain surgery,
  2. an eight day visit to the Surgical Intensive Care Unit with 5 days in a medically induced coma,
  3. a six week stay in the rehab unit at the hospital I used to work,
  4. brain radiation treatments five days a week for eight weeks, and
  5. physical, occupational, and speech therapy with my former coworkers.
Since then, my life has taken a completely new direction from the plan I had since graduating from Physical Therapy school eight  years ago.   I'm very grateful for the new direction my life is taking me, but I sometimes wonder how things might have turned out if didn't need to take this new direction.  I have surprised many people (myself included) with some of the things I have been able to accomplish.  Publishing articles/books, going on national book tours, public speaking at universities/colleges/hospitals, and starting a nonprofit organization were never in my wildest imagination.  The brain tumor hit me pretty hard, but it didn't knock me out!  (It's my turn to counter punch through MKF!)   I hate to admit it, but the brain tumor was the spark that ignited a new fire in me.  I've also learned to appreciate all the little things in life!

I still miss the old activities I use to do.  The tumor took away so much.  Surfing is one of the few things that connects me to the "old" me.  I have met so many amazing people on this journey, but the people who inspire me the most are the survivors I have met on all my travels!  Every person I've met that has attended a First Descent camp (campers, staff, and volunteers) has a unique energy about them.  It's an attitude that is hard to describe, but easy to recognize.  I have met so many amazing survivors in these camps!  I have heard so many incredible stories of triumph that it is humbling being there to witness a fellow survivor's own personal triumphs.  To see it on their faces is an incredible feeling.  I unfortunately could not paddle out to the lineup myself, but the experience of being out there has given me something to shoot for.  Just knowing the journeys my fellow campers had to endure and watching them catch their first waves was so inspiring to me.  Watching someone do something they didn't think they could do is incredible.  Seeing the smiles on their faces coming out of the water with a look of confidence reminded me of my own experiences catching my first wave.  The feeling of riding a wave is nothing short of incredible.  The speed, the freedom, the fact that you are being propelled by pure energy that no human created is pretty cool when you think about it.  It made me smirk seeing the "awe yeah, I did that" look on everyone's face as they confidently walked back to our spot on the beach. I'm still improving physically, but it's taking much longer than I expected.  I look forward to the day that to will be able to paddle out to the lineup and catch my first wave on my own.  Give me some time to figure out how to do it... I can't wait to join my new friends on a wave.  ;P
originally published on www.ericgalvezdpt.com on 9/20/11

Tuesday, September 13, 2011

September is Gynecologic Cancer Awareness Month: A Survivor's Story




In the United States every hour a woman is diagnosed with cervical cancer and every 2.5 hours a woman dies from this preventable disease. Cervical cancer was once the number-one cause of death from cancer in women. Thanks to the Pap test, which can screen for this cancer, the number of women in the United States with cervical cancer has decreased but there is still a lot of work to do.

I met Jennifer Larmon, a cervical cancer survivor, at the NYC Walk to Beat the Clock last year, but it wasn't until we did the Revlon walk against women's cancers representing Tamika and Friends, Inc. back in April, that I really got to know her and her family. She is a beautiful young women who stands strong and with determination. She shares her story in the hopes to make a difference and bring awareness about cervical cancer. Jen is a strong believer that we can eradicate cervical cancer and is determined to help to do just that.

I was amazed to see her family's enormous support, but the one that caught my attention and moved my heart was her little girl, and I must admit, I fell in love with Alyssa.

Ally is such a sweet little girl and immediately became my little friend, so now, I want to pay honor to her mommy. Here is Jen's story.

1. How old were you when you got diagnosed and what was your official diagnosis?

On August 11, 2009 I was diagnosed with Stage IBI Adenocarcinoma Cervical Cancer, I was 30 years old.

2. Can you take us back to when your doctor told you had cancer and what went through your mind?

I found out I had cancer from my caller ID, not my doctor. My phone rang and on the caller ID it said, “Cancer Center. I answered the phone and on the other end was a woman telling me I need to come in for a consultation. “A consultation, for what?” I responded. I knew at that point, but needed to hear it to be 100% sure.

She then asked me if my doctor had called me. My doctor never called. I was then told, “Oh Jennifer, you better call your doctor.” I called my mother who works an hour away from my house and asked her to please come home something is wrong and I don’t know what exactly.

I then called my doctor and told her what had happened and she asked me to come in to talk with her. At this point I knew something was wrong, so I asked her to please just tell me over the phone. She did not want to, but after begging her to tell me…she said, “you have cervical cancer. I started shaking uncontrollably. After a minute or so I asked her what had to be done. She told me I needed a radical hysterectomy.

Upon hearing this news I screamed at the top of my lungs and starting saying “why?” over and over again. Hearing you have cancer and that you will never be able to have another child in the same conversation is horrifying.

How can this all be happening? Just a couple of months ago I was pregnant and so happy. I was pregnant with our second child and miscarried during my third month on June 23, 2009. The only thing that was comforting me during the time after my miscarriage, was that I would be able to try again for a child. And now…that would never happen.

After all of the phone calls and meeting with my doctor and going back and forth to the doctor’s office to pick up copies of my records, my slides from my colposcopy and anything else I needed, I scheduled an appointment at Memorial Sloan Kettering Cancer Center in Manhattan. After various visits to Memorial Sloan Kettering to have another biopsy, I met with the doctor to discuss everything, and get everything in order, I was told that my cancer was Stage 1B1.

3. What kind of treatments did you get and did it worked?

August 31, 2009, I had a radical hysterectomy. I hated leaving my daughter that morning…in fear that I would never see her again. Walking down the hallway away from my husband and my mother on my way to the operating room was so scary to me.

Watching my husband put his arm around my mother to comfort her will never leave my mind. The operation lasted 6 hours. The last thing I remember is looking at the clock that was above the operating table. It was 11:15am, the next thing I remember was waking up in the recovery room at 8:15 pm.

The physical pain that I felt in the next few days was excruciating. After spending 4 days in the hospital I then returned home to recover. A week or so later I received the phone call from my Gynecologic Oncologist that I was waiting for.

My pathology results were good! I was cancer free…no radiation…no chemotherapy needed. Shortly after that I had my catheter taken out.

At one of my first follow up exams I was diagnosed with a right ovarian blood clot (detected through a CT Scan). I was treated for the blood clot with 6 months of Coumadin and 3 months of Warfarin injections (because my INR was not in the range they would have liked it to be in).

4. Do you feel yourself now?

During the 3 to 4 months after my surgery I was in pain almost every day. The past two years have been so hard for me. I often sit and wonder why did this happen. I thank God every day that I am alive and cancer free. But I will never forget all of the physical and emotional pain that this has caused me.

Just one month ago I had my 2 year follow up…Cancer free and blood clot free!

5. If you can give any advice to women what would you say?

If I could give advice to a woman going through this, I would tell them to take each moment at a time. Just because you hear those dreaded words, “you have cancer,” it does not mean your life is over.

Surround yourself with people that will be there for you to support you in a positive, loving way. Educate yourself on what is going on inside you. Make a list of questions and any fears you might have to ask your oncologist.

All the answers and information you need about your specific case will come from your doctor. Don’t do too much reading on the internet about it. Yes, educate yourself…but don’t make yourself crazy with information on other cervical cancer cases that have nothing to do with you, because each case is different.

Do not leave any question you have unanswered. Know all of your options and ask questions regarding fertility. I found comfort in knowing that I was not alone in this battle when I found Tamika and Friends. You are never alone....

6. Can you tell us about your family?

I have the best family anyone could ask for. I am an only child to a single mother, Jean, she is my heart. I could not survive without her.

I have been with my husband, Sean, for almost 14 years. We have been married for 6 years and have a beautiful little girl, Alyssa.

Sean is the strongest person I know. and Alyssa…is my life. I am so blessed to have her. My family is my life and I feel so lucky to have them by my side.

7. Where do you see yourself 5 years from now?

I see myself in 5 years leading a life just like I live today. Cancer free, healthy, happy and enjoying every moment. As much pain as this past 2 years has brought me, it has brought me so much happiness! I feel like this is a new life for me. There is nothing better than hearing, “you are cancer free.” You feel like you can do anything!

I am so happy that there is now a vaccine for cervical cancer. This vaccine will prevent others from developing cancer and preserve fertility. Without the love and support of my family I don’t know how I would have gotten through all of this. I fought this cancer for my baby girl, Alyssa. Mommy loves you and thanks you for being my inspiration to live. I thank God everyday that I have you. I still hope one day to have another child.

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