Monday, December 31, 2012

The 12 Days of Kick mAss


 On the 12th day of Kick mAss my doctor gave to me...
12 days of kickmass_edited-1


There is still time to Support unique mAss Kickers Foundation activities in 2013
http://www.stayclassy.org/charity/mass-kickers-foundation/c5205

Wednesday, December 5, 2012

mAss Kickers 2012 Holiday Challenge


Everyday a tumor or cancer patient faces different challenges that make life a little more difficult.  This holiday season we ask you to symbolically challenge yourself while promoting mAss Kickers Foundation's mission to "provide support and motivation to newly diagnosed tumor/cancer patients and their loved ones."  You can symbolically join their fight by declaring a personal challenge to support them.  Think of it as an "early new year's resolution" with a charitable spin.  We are asking you to create a personal fundraising page and gather support from your family and friends for your personal challenge. 
All you need to do is click on the blue "BECOME A FUNDRAISER" button on the top right of this page AND declare...  
  1. Who you are honoring with this challenge,
  2. What you are doing
  3. Why you are doing this challenge, 
  4. How your friends/ family can support your challenge.

For example one might give up desserts in December to promote a healthy lifestyle to prevent the risk for cancer.  Or one might pledge to exercise at least 3 hours a week to honor a loved one's fight against a tumor or cancer.  This campaign is only limited by your creativity.  Ask your friends and family to show support for your challenge

The funds raised from this campaign will:
 1.  support unique 2013 MKF events
  • a patient reseach seminar in San Diego,
  • a charity kickball tournament in San Diego,
  • a paintball benefit in Michigan,
  • INTERNATIONAL TUMORS SUCK DAY an international campaign, and
  • a NEW EVENT: a survivor speaking tour to the Philippines/Japan
2.   support tumor/cancer research via Stand Up 2 Cancer in 2013, and

3.  support MKF's vision to empower individuals to be proactive in the struggle against tumors and cancer.  

mAss Kickers Foundation is looking to secure our first official office space in 2013.  That is a HUGE STEP!  YOU CAN BE A PART OF THE NEXT PHASE OF MASS KICKERS FOUNDATION!
Tumors Suck stickers will be mailed to you upon creation of a fundraising page.  These unique stickers are a reminder of why you are taking up this challenge. PLEASE SHARE YOUR PHOTOS WITH US ON FACEBOOK

Click HERE TO JOIN THE CHALLENGE! 

2012 mAss Kickers Foundation Year In Review



2012 was a great year for mAss Kickers Foundation!

We started off 2012 at the E! Studios in Hollywood and saw a live taping of “The Soup”.  E! personality, Ken Baker was kind enough to give us a VIP tour of the E! Studios. 

In February, MKF Founder, Eric Galvez spoke at The Rehab Institute of Chicago about his experiences as a young physical therapist turned neuro rehab patient and offered unique advice in treating brain tumor patients.  Later in the month, MKF was at the C4YW conference in New Orleans represented by Heather Swift, Gayle Wismar, and Cindy Sanchez.  Also in February, Lyman Ng, and Brent Glova guest bartended at Local Habit with all tips going to mAss Kickers Foundation to sponsor the Kickball tournament!. 

In March, Heather Swift represented MKF again at the DanaFarber Conference for Young Adult Survivors.  That same weekend, we traveled to Ann Arbor to meet with Google Ann Arbor. Eric also spoke at the University of Michigan to the student groups: Lambda Phi Epsilon, the Filipino American Student Association, and 58 Greene.  Later in March, Eric spoke at his Alma Mater, the University of Michigan Flint Physical Therapy program about his experiences as a physical therapist turned neuro rehab patient.

In April, MKF sponsored our first basketball team in the FASAMI Sports league.  MKF was also represented in Las Vegas for the OMG Cancer Summit for Young Adults by San Diego based mAss Kickers.

In May, MKF teamed up with First Descents, Young Survival Coalition – San Diego chapter, Fin Forward, and International Alliance of Pilots 4 Patients for a bon fire.  In May, we also hosted the first mAss Kickers Charity KickBall Tournament in San Diego.  The winners of the tournament, the SoCal Riot took home the Inaugural Championship P.I.M.P. cups. 

In June, MKF teamed with the SAMFund and 24Hour fitness on an event called Fit2Survive.   Eric presented Dr. Steve Morris’s research findings on the benefits of exercise for cancer survivors.

In August, MKF hosted the fourth Annual TUMORS SUCK Paintball Benefit.  It has gotten bigger each year and >$11000 was raised!   Eric returned to University of Michigan -Flint Physical Therapy Program at the end of the month as a speaker at Doctor of Physical Therapy Hooding Ceremony.

In September, Eric traveled to Texas again to speak at University of Texas – Southwestern about his experiences as a young PT turned neuro rehab patient.  MKF also connected with Community Boost Consulting at the Stay Classy Collaborative in San Diego to help promote International TUMORS SUCK Day 2012.

In October MKF was represented at Fil-Am Fest in San Diego.  Later in the month, we teamed with Hawktober and Floyd’s 99 Barbershop to promote brain tumor awareness and show support for breast cancer patients.  On October 25, we hosted the International Tumors Suck Day Celebration of Life. This was an event for survivors to formally say thanks with toasts to our families, friends, and fellow survivors who stuck with us through the difficult times.  They transformed us into “thrivers”.

In November, we spear headed the creation of a mustache group for “Movember”, the Whiskered Warriors to literally show support for prostate cancer awareness..  MKF was also present at Critical Mass – The Young Adult Cancer Alliance conference.  Eric was also able to speak at Georgia State Physical Therapy Program.

This month, MKF is planning for 2013 events and activities!  We are already planning:
  • a unique patient reseach seminar in San Diego,
  • a charity kickball tournament in San Diego,
  • a paintball benefit in Michigan,
  • INTERNATIONAL TUMORS SUCK DAY an international campaign, and
  • a NEW EVENT: a survivor speaking tour to the Philippines/Japan
  • attending select conferences in 2013
  • a US Healthcare colleges/universities lecture tour…

Please support mAss Kickers Foundation activities in 2013, Click here to step up to the challenge .

Thursday, November 15, 2012

Critical Mass: The Young Adult Cancer Alliance Conference 2012


November 7-9, 2012, Atlanta, Georgia: USA  Critical Mass, The Young Adult Cancer Alliance. Annual Conference.  We were again blown away by the unique display of unity between leaders in young adult tumor/cancer advocacy organizations, scientists, and healthcare professionals to address the unique needs of young adult tumor and cancer patients!  The event started with a mixer in the hotel after everyone arrived to register for the event.  On Thursday, the conference was kicked off with a Keynote from NY Times blogger and Young Adult  Cancer Patient, Suleika Jaouad.  Insurance, fertility issues, current young adult cancer clinical research/psycho social/support services presentations, and on oncology programming issues were highlighted throughout the day.  The day ended with an informal social event at an off- site venue.  This is where relationships are created or solidified and the seeds for "real" interaction between organizations are planted.  

The following morning, the day was opened by Benjamin Rubenstein and highlighted by discussions addressing genomics, collaboration, and resources for patients.  We are excited to see how the relationships built from the conference will address the unmet needs of the young adult tumor/cancer patients.  mAss Kickers Foundation is proud to be a part of this unique collaboration!

Monday, October 29, 2012

2012 International TUMORS SUCK Day


OCTOBER 25, 2012  SAN DIEGO, CA USA.  At Taste and Thirst, in the heart of San Diego's Historic Gas Lamp District, a dedicated group of tumor/cancer survivors celebrated the 2012 International TUMORS SUCK Day. They created a unique happy hour to celebrate another year of living and wanted to recognize their personal supporters with a "Thriver Toast" dedicated to the unsung heros in the survivorship journey:  our family, our friends, and our fellow survivors.  It takes a special group of individuals to step up or step in when someone they know is facing an intimidating tumor/cancer diagnosis.  These unsung heroes deserve recognition because they fulfill a role that is sorely needed, but seldom formally requested.  They are the ones who watch their friends and loved ones become weak from treatment, yet still are there to pick them up or support them!  They see survivors at their weakest and most vulnerable, yet care enough about them to stick around.   It is because of them that tumor/cancer survivors can evolve into "Tumor/Cancer Thrivers."  They are the unsung heros in the journey to "Thrivership.  They deserve recognition!  WE CAN'T THANK THEM ENOUGH FOR STICKING AROUND AND BEING THERE FOR US!

International TUMORS SUCK Day is a day to celebrate life AND the people who make life worth living.  ALL TUMORS SUCK, BUT WE DON'T!  Thanks for sharing this day with us!  We look forward to celebrating it with you in 2013!  Keep October 25 open next year!  Organize your own Tumors Suck Day event next year.  Say thanks to YOUR "mAss Kicking" posse!

Wednesday, October 24, 2012

Rock Da Hawk in Hawktober for Brain Tumor Awareness and Highlight it Pink to Support Breast Cancer Patients!

A friend of mine took the reins on a mohawk brain tumor awareness campaign, Hawktober and I've been helping to promote it.  The first week we got a few people to rock hawks.  We think mohawks represent the fighting attitude it takes to rally people to fight these horrible diseases.  A mohawk definitely grabs people's attention!  With a mohawk, you can see easily the battle scars on our heads from brain surgery!   To honor our Breast Cancer sisters, we decided to do pink highlights to show our support for breast cancer patients since October is also breast cancer awareness month!  We actually went up to Hollywood to do the pink highlights.  I decided to honor my aunt that passed away from breast cancer by dying my mohawk pink!  A few of my friends dyed pink highlights in their hair to honor their breast cancer sisters!  BIG PROPS to Floyd's 99 Rock N Roll Barbershop!  They have been extremely helpful in promoting our efforts!   On Thursday night we will be celebrating International TUMORS SUCK Day.  This is a day we created to celebrate life! Over the last few years, we have met tumor/cancer survivors from all over the world from North America to Australia to Africa to Europe to Asia.  To unify the international battle against all forms of tumors/cancer we created a day when everyone can voice their displeasure with ALL FORMS OF (liquid or solid) TUMORS/CANCER.  INTERNATIONAL TUMORS SUCK DAY was created to express this sentiment.
All that it requires is printing out the logo and posting a picture with it on facebook.  It is easy to participate.
1.  Print out the TUMORS SUCK LOGO. 
2.  SHARE A PICTURE OF THE TUMORS SUCK LOGO ON THE TUMORS SUCK FACEBOOK PAGE.

Please support our efforts to make tumor/cancer survivoship a global issue!   CONSIDER making a small donation or becoming a leader and joining us in this epic battle.   PLEASE HELP US FIGHT ALL FORMS OF TUMORS,  BUT MOST IMPORTANTLY PASS THIS PAGE ON!!!  THIS CAMPAIGN IS BEING LEAD BY A SMALL BUT PASSIONATE GROUP OF TUMOR/CANCER SURVIVORS!  WE CANNOT FIGHT THIS BATTLE ALONE!!!  PLEASE JOIN US IN DECLARING "TUMORS SUCK!"

About mAss Kickers Foundation:
MISSION STATEMENT mAss Kickers Foundation (MKF) is a 501(c)(3) non-profit organization based in San Diego, CA, USA, which provides 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 throughout the year.
VISION STATEMENT To be the first website newly diagnosed tumor/cancer patients and their loved ones visit for information, inspiration, and a "pugilistic attitude" after getting an intimidating diagnosis.  A unique "mAss Kicking Community" will be formed to unite ALL affected by tumors/cancer to battle these horrible diseases.

 Proceeds from the funds raised will be dispersed to tumor/cancer research organizations On 10-25 in San Diego, CA USA we are putting together a Tumors Suck Day Happy Hour at Taste and Thirst in the historic Gas Lamp District.  Please come celebrate life with us! CLICK HERE FOR DETAILS!

Monday, September 17, 2012

Childhood Cancer Awareness Month - Nathan Mwenda

Nathan Mwenda
Diagnosed at age: 8
Currently: a high school junior, age 17
Lives in: Richmond, VA

What was your diagnosis?
Craniopharyngioma (brain tumor)

What treatments or surgeries did you have?
I had surgery to get a shunt and radiation treatment at VCU Medical Center.
What organizations are you involved with?
I am involved with Children's Brain Tumor Foundation as well as Camp Sunshine in Casco, Maine and Camp Mak-A- Dream in Gold Creek, Montana.

Who were the first survivors/thrivers you met?
The first cancer survivors that I met were those from Camp Sunshine. I found out about Camp Sunshine and Camp Mak-A-Dream through Children’s Brain Tumor Foundation.

What is your personal theme song?
My personal theme song is “Lean on Me” by Bill Withers

How are you fighting back against tumors?
I’m fighting back against cancer by advocating for myself, others, and staying positive.

Any advice for people at the beginning of their battle against tumors?
My advice is to be strong and hang in there. Don't let the bad things people say about what you’re going through bring you down. Cherish your family and friends.

Saturday, September 15, 2012

Childhood Cancer Awareness Month - Steven Bell

Steven Bell

Diagnosed at age: 9
Currently: a high school senior, age 18
Lives in: San Diego, CA

What was your diagnosis?

Primitive Neuroectodermal Tumor or PNET (brain cancer)

What treatments or surgeries did you have?

In San Diego, I was performed on successfully to have my baseball sized tumor removed. As far as we know, all of the tumor was removed. But, to make sure, I was sent to St. Jude Children's Research Hospital where I was given 35 days of radiation, including concentrated radiation to the tumor bed, and radiation to whole brain and spine. I was given 30 days to go home, and then returned for four cycles of high dose chemo therapy.

What organizations are you involved with?

I am involved and have presented or assisted with fundraisers for Rady Children's San Diego, Make-A-Wish, the Pediatric Brain Tumor Foundation, the Jordan and Kyra Memorial Foundation, St. Jude Children's Research Hospital, and the American Cancer Society.

Who were the first survivors/thrivers you met?

The first survivors I met were at a group for teenagers with cancer, in treatment or surviving, and their siblings/friends. The group was at my local children's hospital.  It's called SOMBFAB, (Some of my best friends are bald) and I found out about it through the program coordinator at the time. The group is unofficially ages 13-35, however some kids as young as ten have been invited, and some of the people over 35 still come.

What is your personal theme song?

I would say my personal theme song would be Hakuna Matata. I get down and sad, even without surviving cancer. The reason I can keep a good mood usually is by telling myself "no worries."

How are you fighting back against tumors?

I fight back against tumors by being aware, and by sharing my story at events, with friends and family, and by attending and supporting fundraisers for several institutions dedicated to fighting tumors and other cancers.

Any advice for people at the beginning of their battle against tumors?

I would say stick through it. It's hard, and whether or not your journey is smooth as mine was fortunately, or rough, as many of my friends' journeys have been, you can do it, you can come out of it as yourself. Your tumor will never define you if you don't let it, and if you tell yourself you can do it, nothing, and I mean nothing, can stop you.

Friday, September 14, 2012

Monday, September 3, 2012

Surgery!


Surgery is tomorrow, September 4th! While most other high school/college students will be gearing up for school, I'll be gearing up for some IVs and the operating room haha.

Here are some of the videos I’ve made (starting from most recent) describing surgery, revelations, and the recovery process over the past couple of days leading up to this big event..


You can stay posted on my recovery process via CaringBridge here

Friday, August 17, 2012

2012 TUMORS SUCK PAINTBALL BENEFIT: A New Perspective


August 4, 2012 Pinckney Michigan  -  I met Eric randomly in 2011. He happened to be from the same city that I currently live in (Ypsilanti).  I found out we were both brain tumor survivors. He tried to get me to go to the Masskicker’s Paintball Benefit, but I was stubborn and I declined. I was concerned about the physical demands and chickened out. But at least I got to eat some burritos with Eric and his brother, Oliver in Ypsi. I told myself that next year I should give it a chance.

In 2012, Eric invited me to a pre-event dinner at Potbelly’s, down the road from me and I decided it would be good to meet some new people. I’m really glad I went. I got to meet two really cool girls from New York (Deana and Jamie) and I got to know Eric and Oliver better. We spent the entire night talking and barely any of it was about cancer or brain tumors. I had so much fun that night and there was more to come the next day!

Oliver kindly drove the girls and I to the event in the morning. I have to admit I was a little intimidated at first. There were all these hardcore paintballers with mohawks and heavy duty gear. Thankfully, I had at least gotten to know Eric, Oliver, Deana and Jaime. So I had some comfort in knowing I wasn’t the only person who was pretty new to paintballing. I had no idea there was so much stuff involved in paintball ( markers/guns, masks, CO2 ,pads, loose clothing, missions,  special fields, referees, etc.). I was in no hurry to get on the field, but it seemed like everyone wanted get out and going. So I got my gun, mask, paintballs, and CO2 tank filled and quickly followed Oliver on to the field. (This is before I realized someone was going to give me pads a special shirt, and a body guard). I was nervous, but knew I was going to stick close to Oliver. That is… until he got shot right next to me. We were hiding behind a small building and taking on heavy fire. I had never heard such noises. Paintballs were hitting walls rapidly and zipping past my head. It was loud! We were pinned down and I couldn’t tell who was friendly and who I was supposed to be shooting. When Oliver got on the ground to shoot some rounds off he got hit pretty quickly. I was left all alone! Then some guy , who I think was on my team told me shoot at some hidden guy up front. As soon as I took a peak around the corner I got shot in the abdomen. I think it might have ricocheted off the building because it only stung a little. My shirt was a mess and I was out of the game. I don’t think I even got a shot off. I was too worried about shooting my own teammate. Everyone had masks and was in camouflage. It was hot and I was pooped!

The second time around, I was more prepared, but I still didn’t know who to fire at. I was stuck behind a tree and was just firing randomly from behind the tree with my bodyguard. Then what was supposed to be a “helicopter” came around and I was told to fire on it. So I started to unload on it. It must have gone behind one of my teammates because he told me to stop shooting him in the leg. (LOL!)I was just firing as many paintballs at the thing as I could. When I got back to the tents I didn’t even realize that my socks and shoes were covered in paint. Who would shoot at my feet, right? I was pretty unscathed though.

The best part of the day was when we got to unload paintballs on a bunch of unarmed volunteers running around a paintball course. I must have fired off 400 paintballs! An added bonus to the day was the M-16 marker I was given during the raffle. It’s pretty sweet looking and I can’t wait to use it next year.

Overall, meeting new people was the best part of the event. The organizers and the volunteers were really great.  As a 15-year brain cancer survivor, I’ve been to several Relay for Life events and I have to say the Hell’s Survivor’s Benefit was by far more fun. It’s nice to have an alternative experience. I look forward to returning next year.




Thursday, August 16, 2012

An Open Letter to Katherine Schwartz

My doctors rock.  Not just because they're experts in my disease and not just because they're some of the smartest people I know who work at one of the very best facilities in the entire world.  They rock because they care.  They're human and they show it.  Recently, my Oncologist's Physician's Assistant, Katherine Schwartz, was nominated for a prestigious award and I had the privilege of writing a letter of recommendation for her.  I was floored and thrilled beyond anything that I was asked and even more excited to let her know how much she meant to me.

I want to share this letter because it's so important to me that the world knows just how much my doctors affect my life.  At times, they give me the kind of news that no one wants to hear and no one wants to deliver.  They do this with kindness and professionalism and sometimes with tears in their eyes.  They hand me the worst of the worst in the most gentle way possible and I can't imagine how it makes them feel to have to have to do this. I love them because they're not just doctors; they're human.   I'll forever appreciate the work that they do.  I'm so fortunate to have the opportunity to be able to tell them on a regular basis and I'm even more fortunate to have been able to put my appreciation in writing  for the fabulous Katherine Schwartz.

Below is the letter that I wrote for Katherine.


Dear Selection Committee:

My name is Becky and I am living with a rare form of thyroid cancer that currently has no systemic cure.   I live in Florida, but I travel to MD Anderson Cancer Center in Houston, TX so I can be treated by an expert that specializes in my disease.  While I definitely don’t look forward to my follow-ups and wish they weren’t a part of my life, I don’t ever mind going to the doctor because I am fortunate enough to receive top of the line care with the most amazing doctors and professionals in the entire world.  One of those professionals is Katherine Schwartz in the department of surgical oncology.  She is an incredible human being.

I met Katherine immediately before my first biopsy and she was one of the first people that I spoke with after that same biopsy reassured me that, yes, I had cancer.  She was a breath of fresh air in the middle of the dreariness of cancerland.

 When I was diagnosed , I felt like my heart was going to beat right out of my chest and my  soul hurt so badly that I didn’t think I would ever breathe normally again. I was scared and feeling like no one in the world could possibly understand the madness that I was experiencing.  It was Katherine who pulled me through that.   Katherine explained things in detail and on my level and with a kindness that only an exceptional individual like her could display.  She personally read every single scan result to me over the phone.  She reviewed every last detail of each finding, test result, poke and prod.  And when I cried, she gave me a million reasons why everything was going to work out.  Katherine doesn’t only treat my medical condition; she treats the ache in my soul when I need it the most.  Katherine makes the tough stuff a little bit easier to swallow.  That to me is invaluable.

I often find myself explaining my situation to doctors over and over again and for the most part, I end up educating them about the ins and outs of my type of cancer.  This is draining and discouraging.   Katherine is better than that.   She is not only incredibly knowledgeable about my disease; she takes the time to get to know Becky the person, rather than just Becky the patient.  She never lets me leave the hospital until she knows I understand everything that has happened and everything that might happen. I leave a conversation with her feeling educated and like I have choices. 

I could write a letter for miles and miles telling you about the fabulous Katherine Schwartz.  I could tell you about my liver scans and how she delivered my news perfectly.  She wasn’t just a medical professional that day.  She was a compassionate human being that cared about my outcome.  I could tell you about the scar on my neck and how Katherine worked extra hard to make sure that I knew how to take good care of it and reassured me that this was just a small detail in the grand scheme of things.  I could tell you about the day I couldn’t stop crying because I thought cancer was going to ruin my life.  Katherine was there then, too and all it took was a conversation with her to help ease my worries.  I could tell you about all of these things and more, but words will never be enough to describe the special qualities Katherine possesses.

 I have to live with cancer and the unknown.  I can’t predict the future and I don’t know what cancer or life is going to throw in my direction.  Knowing that a medical professional like Katherine is by my side makes all of those things a little more tolerable.  Katherine’s job isn’t easy and she doesn’t always get to deliver good news, but I have never seen Katherine without a smile on her face and a way around the cancer obstacles that come in my direction.   I’ll always be appreciative of the care she provides for me because at the end of the day it’s not just medical knowledge that keeps me going, it’s the kindness and authenticity of people like Katherine.

Sincerely,

Rebecca MacKenzie
Cancer survivor and proud patient of Katherine Schwartz

Update on BT Adventures

Today, today, live like you wanna,
Let yesterday burn and throw it in a fire, in a fire, in a fire,
Live like a Warrior

Matisyahu, Live Like a Warrior
Spark Seeker, 2012

There have been so many developments in the past couple of weeks that I found it easier to sit down for a few minutes and record the following videos rather than type everything all out. I had a great visit with MD Anderson last week and loved the comfortable atmosphere that they nurtured as well as their proton beam (who eerily resembled characters from the TV show House,) but learned that I cannot use their proton beam radiation machine without an open biopsy to determine the exact cell type of my tumor; and, due to its location, the open biopsy would equate to almost a complete resection of the tumor anyways. Assuming that at least 80% of the tumor was removed, proton beam radiation would be rendered pretty much needless after the biopsy/surgery. The MD Anderson visit made my decision a bit easier because they eliminated the options of what to do, and narrowed the decision down to who/where do I want to put my life on the line. I will definitely revisit the proton beam option down the road if there is a reoccurrence or determination of its necessity.

After consideration of time constraints, my level of confidence in facilities, coordinating appointments, and the experience levels for the insular region of all of the centers I visited, I have chosen a doctor at the University of California San Francisco (UCSF) to perform my craniotomy, which will take place on September 4, 2012.
This first video details my initial diagnosis of a brain tumor in 2007 over the course of the past five years up until today, as I approach a craniotomy in upcoming weeks.


This second video explains the expectations and possible outcomes of my craniotomy


Friday, August 3, 2012

Teen Heads Up Conference 2012 at Camp Mak-A-Dream

Ahh, Home,
Let me come Home
Home is whenever I’m with you
 Edward Sharpe & The Magnetic Zeroes, Home
Up From Below, 2009
I can't even begin to accurately describe the best week of my life. I spent it at the 3rd Teen Heads Up Conference which was sponsored by the Children’s Brain Tumor Foundation and hosted at Camp Mak-A-Dream in Montana. This conference was created for teenage survivors of brain tumors/cancer. Participants from previous years said it best: words can't explain the experience - you have to be there.
Participants ranged from ages 13 to 18, and mentors + volunteers were predominantly in their 20s and 30s. The presence of mentors was probably the most valuable part of this conference because they helped show us what lies ahead: a future. There is always hope. We woke up and saw it in each others' eyes every day.
There were "camp activities" like a sports and recreation outdoor area with a put-put course, volleyball court, basketball court, and endless fields. Activities included spending time on a zip line, high ropes course, being creative in the art barn, trying your hand at archery, and hiking up "The Beaut." I hiked “The Beaut” twice..once around sunrise on the third morning, and once around sunset on the last night. I couldn't think of a more beautiful way to spend my last night in Montana than sitting atop a mountain, taking in the night sky, surrounding mountains, light breeze, and a full moon in the background. Breakout sessions and workshops included touching on the topics of: dating (where my CBTF guest blog was highlighted), social cues, the high school to college transition for brain tumor/cancer survivors, short and long-term impacts of treatment.
Three of my cabin-mates are going to be high school seniors like me, and another just graduated high school. Close in age with similar interests, we all had an instant connection. After only a half hour of knowing each other, we were already laughing, hugging up a storm, and sharing our stories on the bus. It just so happens that one of my cabin-mates lives in Houston, so we're going to meet up this week while I'm there for my MD Anderson proton beam consultation! Another cabin-mate noted that although we have only known each other for about a week, it feels like we know each other better than those we have known for over a dozen years. Plain and simple: everyone at Camp Mak-A-Dream knows what it's like to be a mAss Kicker, to overcome obstacles, to reevaluate life, and to challenge oneself.
Quite a few of the mentors were diagnosed in their junior or senior year of high school, a perfect match for the time frame of my recent re-diagnosis. One particular mentor stood out to me with her spirit and resolve. She was diagnosed at 16 and missed over a year of high school, but was determined to graduate on time with her class. After spending three straight months unable to leave the hospital after surgery and relearning how to walk, she graduated on time, finishing 2.5 years of school in ONE year! She pushed herself as she possibly could, taking extra classes, studying more than everyone else, and proving that as survivors, we are so much more than a diagnosis.
High school and college students diagnosed with cancer have to reevaluate their goals and accept the loss of abilities and dreams, whether those be physical, mental, or emotional. Some of the long term side effects of chemo and radiation include vision, hearing, and memory difficulties; entering the work force with the "new you" requires a reassessment of goals and career choices.
What you can't explain about this trip are the people. We are so much more than survivors..we are athletes, musicians, aspiring film makers, accountants, educators, etc...we cannot be defined or held back by a diagnosis. No one aspires to join the brain tumor club, but its members possess the highest possible levels of bravery and tenacity.

Thursday, July 19, 2012

EEG Shenanigans

Hope - I just need a ray of that
'Cause no one sees my vision when I play it for 'em
Dr. Dre (feat. Eminem and Skylar Grey), I Need a Doctor
2010
I spent Monday through Thursday this week at Harper University Hospital in Michigan for a continuous EEG/sleep study. The test concluded that either a) my symptoms are not seizures, or b) because the tumor is located so deeply in the insular region, the scalp EEG can’t pick up the signals. The findings won’t really affect how I decide to treat my tumor, but they might have an impact on seizure medication that I’m taking. I might stop taking Keppra, which I have been on for the past three years; Keppra has greatly reduced my symptoms, but it has never completely gotten rid of them.
Here’s a description of this week in the hospital:

Currently, the doctor decisions are all tied up at 1-1-1 with 3 different opinions:
Karmanos DMC: surgery
Johns Hopkins: watch and wait
Mayo Clinic: surgery is too risky; opt for radiation/chemotherapy

UCSF: will hear back next week
MD Anderson/Dana Farber: still deciding about contacting them
I recorded these videos on Wednesday night when a few friends came to the hospital to visit me..they dressed up in scrubs and managed to stay past visiting hours because they were dressed like nurses/doctors. They put on a little dance show for me and we attempted to make a music video for Eminem’s song “I Need a Doctor”..this is what friends are for!

Saturday, June 30, 2012

Surprise..you need brain surgery!

Then they'll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say to me, say to me, say to me,
This one's a fighter
Gym Class Heroes, The Fighter
The Papercut Chronicles II, 2012
On Monday I had the most comprehensive mAss kicking appointment of my life. I found out many new things, things that other doctors had not bothered to tell me or that had somehow been looked over. My brain tumor (outlined in blue on the left) is not actually an astrocytoma, but an oligodendroglioma; it is also grade 2 and is located in the left frontal insular region, not in the left frontal lobe where I had been originally been told. According to the National Brain Tumor Society, this type of tumor accounts for 2% of all brain tumors. National Brain Tumor Society also states that brain tumors are the leading cause of cancer-related deaths for children under 20..wow. AYAs really need more clinical trials and research being put towards mAss kicking.
Contrary to MRI reports I’ve received over the past five years, the neuro-oncologist that I saw declared my tumor “stable by no means.” Radiologists had been comparing my most recent scan only to the previous scan from 6-12 months ago instead of comparing the current scan to the original scan from 2007. When comparing scans that are 6-12 months apart you don’t really notice significant growth. However, after comparing recent scans to scans from 2007, you can see noticeable growth where the tumor has spread into the posterior and is infiltrating like a douchebag! This podcast from Johns Hopkins best explains the nature, progression, and treatment of gliomas like mine.
Radiation, chemo, and gamma ray treatment do not apply at this point in time because of the low graded nature of the tumor. The two options are: a) watch and wait or b) act aggressively with surgery. I’m set on surgery and am starting to book appointments with neuro-oncologists across the nation. Somewhere down the road, whether that be in a year, five, or a dozen, the “watch and wait” option leads to a guaranteed grade 3 tumor (aka brain cancer) and eventually a grade 4 tumor. Brain tumors graded 3 and 4 have to be treated with chemo and radiation alongside surgery, making the recovery process much harder and providing a much worse prognosis. My type of tumor, oligodendroglioma , typically reaches grade 3 after an average of 10-12 years from initial diagnosis. Time is on my side because I’m young and have not yet reached grade 3; regardless, 5-10 years from now the tumor could be much deeper, making the surgery much more complicated and risky. As the neuro-oncologist on Monday put it, “the risks will never be equal to or lower than they are today.” When it comes down to making the big decision about surgery, I have to take the risks today or tomorrows benefits. Ultimately, surgery to remove the tumor is inevitable, so I’m going to get it out of the way before I start college in a year.
Here’s a metaphor that the neuro-oncologist from Monday used: You’re driving on the highway and you hear on the radio that there is an icy bridge with serious accidents on it 10 miles down the road. You have 10 miles to find an exit, so you don’t have to get off the road on the first exit (don’t need to have surgery today, tomorrow, or next week), but you do need to get off of the highway - you know what lies ahead.

Getting at/to the tumor in the beginning and exiting when the surgery is almost done will be the most dangerous parts. The best case scenario without any complications during surgery would be spending a few days overnight in the hospital with 2 weeks to 4 months of basic recovery and a solid 2 months of physical therapy. The “good” news is that the location of tumor does not directly affect major functions like motor, speech, vision, or memory. There is also no direct hearing or vision impact. The location of the tumor only directly affects taste and smell. However, surrounding veins and arteries (like the middle cerebral artery) do carry blood flow directly to those important areas. I’m skipping a biopsy of the tumor because it involves taking risks without really gaining anything. Doctors are already 95% sure of the cell type..there’s no use in taking the risk for another 5% confirmation without any other gain.

I’ll be staying downtown at DMC for about 5 days the week of the 16th for a continuous EEG and sleep study to check out seizure activity and confirm or dismiss if my symptoms are seizures seeing as they have changed since 2007. If they’re not actually seizures, then I’ve been wiped out on Keppra for 3 wasted years! The odds that my symptoms are seizures is high though, because the insular region is known for producing “weird” and “atypical” seizures, like my symptoms. I guess the EEG will be the judge of that!
I’m currently looking into neuro-oncology surgeons at DMC, Johns Hopkins, Mayo Clinic, Memorial Sloan Kettering, possibly UCSF, and possibly UMiami. I have many mAss kicking friends to thank for these wonderful connections. I’ll probably post a video update from my hospital bed next week.

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