2013 Year in Review

2013 was another exciting year for mAss Kickers Foundation! We got our first office space at the prestigious San Diego Foundation. This was the first step in attaining credibility as a startup nonprofit. In the San Diego Foundation, we would be neighbors with CoTA (Collaborations: Teachers and Artists), Voice of San Diego, Pacific Arts Movement , and other San Diego based nonprofit organizations. We made some great connections and look forward to future collaborations.

2013 was also the year that we created mAss Kickers Sports. This was the first year we had athletes pushing themselves through competition to honor the people who are in an epic “battle” for their lives and well-being. People ran, biked, swam, played soccer, and played basketball to honor the brave people combating these horrible diseases!

mAss Kickers Foundation attained new video equipment and created a bunch of new videos here: 

We were very excited to start 2013! In January, mAss Kickers Foundation was well represented at the American Physical Therapy Association’s Annual Combined Section Meeting in San Diego. We are looking forward to getting more involved with the APTA Oncology Section to address physical rehabilitation for post-treatment impairments in tumor/cancer patients.

mAss Kickers Foundation had our first table at the C4YW(Cancer 4 Young Women) conference in Seattle, Washington in February. It was very interesting gaining insight on the unique issues of survivorship after breast cancer treatment. We met many new friends there and we look forward to returning in 2014!

In March, mAss Kickers Foundation had the opportunity to travel to Hawaii and speak about young adult survivorship at the University of Hawaii at Manoa, School of Social Work. Hannah Hansen, Marc Rodriguez, and Eric Galvez shared their personal stories as young adult survivors with future Social Workers and addressed questions from the students. One of the first high school mAss Kickers, Catherine Blotner, attended Cancer Treatment Center of America Blogger Summit again in Arizona. So many great connections were made there.

Later in March, we were introduced to the concept of “Integrative Medicine.” To learn more about Integrative Medicine to fight cancer, Arilda Surridge, Monika Allen, and Eric Galvez attended the UCSD Integrative Oncology conference. 

In April, we had a table at the Stupid Cancer, OMG Conference for young adult cancer survivors in Las Vegas, NV. It was great reconnecting with old friends and meeting new friends who are just starting their survivorship journey. OMG is the premier gathering for education and networking for young adult survivors.

Collaboration is the KEY to winning the war on tumors/cancer. Realistically, no single person or organization will defeat these diseases. In May, we brought together scientists, patients, healthcare professionals, and advocates together to talk about how, TOGETHER, WE CAN FIGHT THESE DISEASES

In July we continued our international travel.  We visited Tokyo, Japan and met up with a few survivors in Tokyo.  We then went to Manila, Philippines and gave a talk at Ateneo De Manila to future healthcare professionals and met some cancer survivors.  We made many new international friends and look forward to returning some day.
Japan Day 1 Japan Day 2 Japan Day 3
Japan Day 4 Japan Day 5 Japan Day 6
Philippines Day 1 Philippines Day 2 Philippines Day 3
Philippines Day 4 Philippines Day 5 Philippines Day 6 Philippines Day 7, 8

We returned to the USA in August and spent a few days in Michigan for one of our signature events. Angel Bureau and Andrew Wlodyga organized the 4th Annual TUMORS SUCK PAINTBALL BENEFIT at Hell’s Survivors Paintball field in Pinckney, MI USA . The event has gotten more popular every year! We are always honored to meet new survivors at this event! It is also great seeing the die-hard paint ballers every year because their enthusiasm in the event embodies the assistance from friends and family that a “post-treatment survivor” needs to become a “post-treatment thriver.”

In October, we did a minority bone marrow registry drive for A3M at the FilAmFest cultural festival in San Diego, CA USA. We believe that it is imperative for ethnic minorities to be on the registry because life saving bone marrow matches are based on the similarities in the genetic codes of people of similar ethnic backgrounds. Later in the month we held our annual International Tumors Suck Day: Celebration of Life in San Diego California. At this event we honored the people that stuck by us through the difficult times with toasts for family, friends, and fellow survivors. Check out the video

In November, we teamed up with A3M again to host a minority bone marrow registry drive at the Pacific Art Movement’s 2013 San Diego Asian Film Festival. Many new connections were made there, opening the door for future collaborations.  Of course we had to participate in Movember/"No-shave November"... always funny seeing the pictures and the nicknames for the facial hair!

In December, we are moving offices again because we do too much travel to necessitate a formal office. We decided to look into renting desk space at 3rd Space in San Diego. There are many start-ups and creative organizations there. We are looking forward to the new collaborations we create there!

We have big plans in 2014. We want to do more international travel next year to educate people about post-treatment “thrivership”… We potentially have the University of Singapore and hospitals in Vancouver Canada on the agenda. We also may return to the University of Hawaii at Manoa. Please consider a tax-deductible donation so that we can fund our ambitious 2014 plans! THE WORLD NEEDS TO LEARN THAT A TUMOR/CANCER DIAGNOSIS IS NOT A DEATH SENTENCE. THEY MUST LEARN HOW TO KICK MASS!

G+ hangout with Catherine

Hanging out with the Liz Army and Catherine one of the founders of #btsm on twitter.

G+ Hangout with Liz Salmi

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.

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.

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

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

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.

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!

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 16^th 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.

PET Scan Party

All the madness that occurs.
All the highs, all the lows,
As the room is spinning goes
We'll run riot,
We'll be glowing in the dark.

Coldplay, Charlie Brown

Mylo Xylo, 2012

A positron emission tomography, or a PET scan, is pretty similar to an MRI. From a visual standpoint, the machine looks like an MRI machine, only it's about 1/3 of the size in length. The best part about PET scans are that they barley make any noise. They're about as loud as an air conditioning unit, much quieter than the banging and knocking of an MRI machine. The biggest downside to this visit was probably all of the failed IV picks - after six attempts two were finally placed. I’d say that that is a pretty good downside for a hospital visit! The purpose of this scan was to further investigate the increase in density that was discovered in my brain tumor a few months ago, and to gain a better understanding of the cell type of the tumor so that we know what to do or what not to do next. I have a feeling that my next course of action will either be drastically new, or the brain tumor questions and probing will be put to rest..I should get the results within the next couple of days.

The last time I was at DMC Children's Hospital was in 2008. I was a patient there for a 5 day stretch that consisted of a continued EEG and sleep study. Within the first couple of hours of my day, an elderly volunteer came into my room and asked me what my favorite color was. I told him it was a close tie between blue and black..he vanished and moments later reappeared with a handmade fleece blanket! Who knew a cozy blanket could be so comforting. The downside to DMC Children's Hospital is that well, it's a children's hospital. As a 17 year old soon to be high school senior, sharing a room with a 6 month old isn't very much fun. I love little kids, but in those circumstances it would have been much more enjoyable to room with someone my age or older who can relate to procedures or common interests. I suppose that depending on the hospital, the older mentor-younger sage scale will always be teeter-tottering.

On the other hand, nurses and doctors working at a children's hospital typically outwardly express more energy, creating a warmer, friendlier environment. A particular nurse that I met on this adventure, Jane, went out of her way to make me laugh and build a patient-nurse connection. We discussed my plan to pursue a special needs education career path, and she even recommended a book to check out this summer - Musicophilia. Written by neurologist Oliver Sacks, the book explores how music affects the brain, human emotions, moods, etc. There are even documentations of how music has helped some of his epileptic and Parkinson’s stricken patients learn to thrive. I’ll let you know what I think once I’ve checked it out!

After the long day at DMC I kicked off summer with a bonfire celebration and pool party that went a little something like this..

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

Bloggers from CTCA Blogger Summit 2012

CTCA Blogger Summit in review
Cancer Treatment Centers of America: http://www.cancercenter.com/

Rob: http://www.robcares.com/ - Excellent resource for caregivers
Robyn: http://www.cancerhawk.com/ - Your one stop shop for cancer resources
Alex: http://www.theworldaccordingtoalexandra.com/ - The funny side of cancer
Reagan: http://www.thecancerdocuments.blogspot.com/ - Kicking colon mAss and taking names
Diane: http://doublewhammied.com/ - The witty, real deal on living with cancer

CTCA Blogger Summit 2012

If you wanna build your love up, put your hate down
Ooh, that's the only way to live

Turnin' negatives to positives
Chris Rene, Young Homie2012

This past weekend a group of bloggers including myself were flown out to the Cancer Treatment Centers of America's Western Regional Medical Facility in Goodyear, AZ. Our group of survivors and caregivers varied in age and tumor/cancer experiences, but one thing we all shared in common was skepticism about how different Cancer Treatment Centers of America (CTCA) could really be. Although CTCA has facilities popping up all over the map in places like Illinois, Pennsylvania, Oklahoma, and Arizona, I had actually never heard of them until this summit, and I wasn’t the only one. We bloggers spent a few days learning about what CTCA, hearing from patients and professionals involved with CTCA, and decided for ourselves what CTCA had to offer.

CTCA prides itself on treating the person with the cancer, not just the cancer. Employees at CTCA are referred to as stakeholders, because each person working for CTCA has a stake in the lives of the patients and is involved in patients’ treatment one way or another. CTCA operates as an all digital cancer treatment center, which translates into patients getting faster results with fewer errors along the way. “Whole-body” treatment is the most outright difference between CTCA and other treatment centers; CTCA offers nutrition, naturopathic and mental health specialists as a part of the patient’s “team,” instead of just focusing on killing cancer. A care manager, who is typically an oncology nurse, quarterbacks the team of doctors and specialists for the patient, and the patient has overarching leadership in their treatment process. This team works together to figure out what they can do for the patient, rather than what they can do to the patient.

CTCA puts a HUGE emphasis on nutrition, and rightfully so. Maintaining weight and paying attention to diet is critical for patients in the midst of battling the chemo monster. The chefs at CTCA make it easy for patients to find a way to start eating regularity again through their determination to find out what fits best for each patient, whether that food is a personalized smoothie or a healthier rendition of mac n’ cheese. Imagine that, individualized care. The food at CTCA was both nutritious and delicious, but the healthy buzz wore off Sunday morning when I had Sonic for lunch though..hehe.

Notable facility attributes:The library upstairs was full of cancer patient and caregiver literature for any cancer or concern you could think of. I took full advantage of these materials and brought quite a bundle back home. There is also a pharmacy on the first floor of the facility, making running an errand to fill a script one less thing for patients to worry about. The lodging for patients and family members were beautiful as well, and looked more like hotel suites than hospital rooms. CTCA was designed so that patients would feel at home, and I think their most effective implementation of minimizing the dreaded “hospital feel” is **the absence of an intercom system**. Patients don't have to worry about hearing a doctor paged at 3am when they're trying to sleep.

Strengths of CTCA based off of quotes from the patient panel:
TIME: "Time is your enemy if you have cancer" – So true. You lose time when you're trying to coordinate all of your appointments in different locations. CTCA can cut down on wasted time spent in hospitals and running across town to appointments at numerous locations. CTCA is your one stop shop for surgery, chemo, radiation, nutrition, therapy, and rehab. Patients even save time on their visits by checking in on their car ride to CTCA from the airport, that way treatment can commence as soon as they walk in the door.

CONFIDENCE: "It would not enter my mind to go anywhere else now. It's not even an option" – When patients are that confident in their treatment center, you know CTCA must be doing something right. Panelists talked about how their experience was so positive at CTCA that they didn’t want to leave after their treatment was over.

UNITY: “We are family” - Patient empowering programs like Cancer Fighters led by giant teddy bears like a man named Blas that I met make sure that patients are connected one-on-one with mentors. These mentors typically have beat the same cancer or are able to discuss similar treatments and interests. By keeping patients connected, whether they’re in the beginning or final stages of treatment, patients are reminded and reassured that they are not alone.

General downsides to CTCA:
INSURANCE: CTCA does not treat patients with Medicare/Medicaid, which poses a serious problem to young adult patients who are diagnosed without health insurance.

(possibly) TRAVEL: Although CTCA pays to fly their patients cross country for treatment, boarding an airplane every other week could be taxing for patients in the midst of treatment. I think it’s up to the patient to determine if the doctors and standard of care are worth the trip.

As the summit wrapped up Saturday afternoon and I took in the stories that the panel of caregivers and survivors shared, my heart swelled. The stories connected everyone in the room because we all “got it.” We all understood how tumors/cancer disrupts your life and how scary a diagnosis can seem. The panel testified to the light that’s starting to emerge for tumor/cancer patients in the healthcare because of CTCA; CTCA is “built on hope,” and I left CTCA with the hope that one day all patients will be treated with the utmost compassion, dignity, and respect, regardless of where they receive care. My biggest takeaway from Cancer Treatment Centers of America’s Blogger Summit is the realization of how flawed other treatment centers are without a holistic approach to treating cancer patients’ needs.

Stay tuned for a video talking about the mAss Kickers that I met in AZ!

My mAss Kickin’ Team

We're standing in a light that won't fade,Tomorrow's coming but this won't change,Cause some days stay gold forever.
The Wanted, Gold ForeverBattleground, 2011

Some of the roles on my mAss kicking team naturally formed – familial roles develop somewhere in the process early on. Other roles formed after I continuously sought advice or a place to express my concerns. I replaced a few doctors and stopped visiting a few hospitals, and now I have the right ones in my corner; not every doctor will take a personal interest in your case, and those who do are worth investing in. My mAss kicking team is comprised of friends and family who stick out the roller coaster ride that is mAss kicking, whether they know their roles or not.

Automatically drafted teammates: My sister, or sblot as many people call her, is always there to listen and reassure me that everything is going to be alright. My Dad, rblot, has a peaceful attitude that is perfect for mediating times of stress. My Mom, ablot, schedules most of my appointments and makes sure that my prescriptions are filled, both of which are necessities that I sometimes take for granted.

Those who stepped up to the plate:
My high school advisor always keeps things in perspective for me. If I have a test, whether medical or school related, she always calms me down. I rarely allow myself to admit to a headache or seizure as the excuse for a missing assignment, but sometimes she convinces me to cut myself some slack. The school nurse, and everyone’s second mother, provides me with never ending positivity and encouragement. These two faculty members don’t have to play the roles that they do, but they choose to; they show me the light of the world every day, and I am humbled by their wisdom.

The cheerleaders:
Three of my friends, Ajay, Caroline, and Puja, are probably the best support system I could ever ask for. Ajay and Puja are always smiling and laughing, and their silliness spreads like wildfire, putting everyone in a good mood. Puja is one of the sweetest and most compassionate people that I know, and I love that she’s always in the mood to brighten up someone’s day with a hug. I typically refer to Ajay as my ray of sunshine on a cloudy day or my better half; we spend a lot of time together, and whenever I’m stressed he boosts my mood with his jolly personality. Caroline has the ability to turn any situation into something hysterical, and I usually end up laughing so hard that she brings me to tears.

Designated teammates:
My high school tennis team – tennis was always a place where I could go to get away from my medical stress and fears. After having two severe back injuries in 2010 and surgery in 2011, watching my teammates play and seeing their passion out on the courts reminded me that I’d probably make it back out onto the court despite what some doctors said. I made a point of continuing to attend matches, take pictures, and cheer on teammates as we were regional and state champions in 2010, and regional and state runner-ups in 2011. Within the past few weeks I’ve made a strong push towards getting back on the court, and things are looking like I’ll actually be able to compete for a full season this year! On the court I’m not a patient, I’m just another player. On the court I control the outcome of events, not doctors or MRI machines! When they’re rooting for me in a relay race or a match what they’re really rooting for isn’t a win on the court, but a victory against the walls that mAss kickers have to knock down.

Teammates who developed by chance:
Erich Zeeb, who I previously blogged about, keeps me motivated. Erich and I met up for lunch in Ann Arbor a few weeks ago, and he told me that he has continued to stay in shape amidst his chemo treatments by swimming laps with buckets on both ends of the pool in case he needs to heave. Not that’s dedication. For the past year I recovered from back surgery, and had become a bit of a lazy slug. Erich’s determination to stay fit was a wakeup call for me..if Erich could find the inner drive to stay fit in the midst of chemo, then I could find the energy and make the time to get myself back in shape.
I can’t even put words to how many opportunities and resources Eric Galvez, the mastermind behind MKF, has provided me. My involvement with the mAss Kickers Foundation gave me a purpose in the beginning of my mAss kicking journey and made me realize that I wanted a career helping others. The rest of the MKF bloggers and advocates out there like Amanda, Kristen, Ligaya, Jennifer, Matt, etc. remind me that the future is not too unknown, and that there will be a mAss kicking support system out there for me at any age.

Ultimately, I think that friends are the best support system. After a long day in the hospital or a weekend full of tests, I just want to feel “normal.” Whether “normal” is going to tennis practice or sitting around a bonfire with a group of friends relaxing and laughing, I know that I’m not alone.

Affects of Tumors/Cancer on High School Relationships

Visions of grandeur,
Rolling across state lines,
Midnight fits for exit,
Navy skies, perfect time

Outasight, Catch Me If You CanFurther EP, 2010

Having a brain tumor has created some awkward situations for me in the dating department, but nothing serious. My biggest concerns when dating someone have always been when to introduce the medical aspect of my life and how much to disclose. Luckily, having a tumor/cancer doesn’t pose as much of a deal breaker for high school students in relationships. Generally speaking, high school students don’t really think about tumor/cancer related topics. It’s pretty safe to say that high school students know someone or at least know “someone who knows someone” who is affected by cancer, but most high school students aren’t concerned with cancer because teens with tumors/cancer don’t appear to be very prevalent to the general public.

The most frustrating situation is when it comes to being out at a party or on a date and not being able to "stay up late" or stay out past 10:30-ish pm. If I don’t get enough sleep, it’s fairly likely that I’ll have some sort of a headache or seizure the next day. Most people describe me as “chill,” but from the Keppra I’m more than likely just really tired. It’s not very fun to always have to be the first person to leave, but I try to start my nights earlier, that way when they end earlier they’ve lasted longer.

I find myself rummaging through my backpack or purse looking for a something and pulling out a bottle or bag of pills and having to explain why I carry them around with me on a weekly basis hahah. I usually forget to turn off the 5:30pm Keppra alarm on my phone while in the movies too, which leads to apologizing for leaving my phone on, usually later leading to explaining why I have an alarm set for 5:30pm in the first place. Besides those two common situations and sleep stipulations, I’m lucky to say that my medical history doesn’t impact my dating life that much.

I wrote a guest blog for the Children’s Brain Tumor Foundation earlier this month that gives advice geared towards the high school/college aged dating thrivers out there..check it out!

How has cancer positively or negatively affected your relationships?

I’m glad February is the shortest month of the year.  February is associated with my least favorite Hallmark Holiday, Valentine’s Day.  Before my brain tumor diagnosis, I was a pretty active guy.  You would rarely catch me at home, however, I was more into “hanging out” with girls rather than “dating.”  I never liked labels.  I had just gotten out of a 7-year relationship when I moved to San Diego, and I was in a new and exciting city as a young professional fresh out of physical therapy school. I’ll admit I was having a lot of fun!  When I got diagnosed, all my close friends and family were back home in Michigan.  I made plenty of friends when I moved out to San Diego, but the friends that stood by me during my recovery were something else.  They became my San Diego family.  For that, I’ll forever be grateful!  I decided to stay in San Diego because most of my friends in Ann Arbor, MI were gone.  I would have had to move back home with my parents if I didn't have insurance, but I decided that I should stay in San Diego to take advantage of all the rehab opportunities here in San Diego.  My parents decided to split time to be with me in San Diego and Michigan, which ultimately lead to their divorce.  The tension in their relationship had been building for years. Their decision to get a divorce was shocking but not surprising.  I’m still very close with both parents, and I don’t hold ill will towards either of them.  I’m glad they finally did it for both their sakes. For my brother and me, the divorce was much easier to handle as adults rather than kids.  I sincerely hope they are both happier now!

As for my current relationship status, I have no time to date.  My priorities are:

•   My personal rehab
•   mAss Kickers Foundation
•   Traveling
•   My hobbies: sports, reading/writing, movies/videos
•    My family’s/friend’s well being
•  My Spirituality 
•  Hanging out/relaxing

This doesn’t leave much room for an active dating life.  HAHAHA!  Couple the above priorities with post treatment fatigue issues = no dating scene for me!  Relationships are just another thing that I don’t want to waste my energy worrying about.  I don’t have the energy to deal with added drama in my life because my plate is already full!  I’m not sure other survivors/thrivers feel the same.  It will be interesting to read everyone’s thoughts.  I’m curious to get their take on relationships. 

MD Anderson Brain Tumor Conference May 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.

Top 10 Blessings Since Being Diagnosed With A Brain Tumor

Well, I started out down a dirty road

Started out all alone

And the sun went down as I crossed the hill

And the town lit up, the world got still

Tom Petty, Learning to Fly, Into the Great Wide Open 1991

1. Discovering the mAss Kickers Foundation and all of the incredible advocates, patients, survivors, and other organizations that are tied in with the MKF

2. Meeting the most dedicated doctor that I know, my neurologist, who will answer any call, text, or email no matter what time of the day or night I need her

3. Meeting the loving, energetic men and women that make up the Great Lakes Rangers and F.U.B.A.R. paintball teams

4. Gaining a greater understanding of the medical world around me which includes technology, doctors, treatment options, facilities, and diagnoses

5. Realizing how precious life is and how lucky I am to be alive

6. Providing me with experiences that taught me to be more patient with others

7. Teaching me to take charge of my life and make decisions that best suit my needs

8. Forcing me to listen to my body even if I'd like to pretend that I'm 100% healthy at all times

9. Allowing me to realize that no matter how bad a situation might seem, there is always someone worse off
10. Realizing that life is more than sports and school; it’s about relationships and the impact that you make on the world around you