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!

CTCA Blogger Summit 2013

I visited Cancer Treatment Centers of America (CTCA) a year ago for their first ever bloggers summit. My initiative at the summit was to learn about CTCA in general. How their hospital ran, what kind of innovative technology they used, targeted research trials, and learn about why they think patients should pick their standard of care. I emerged with a keen understanding that CTCA’s patients come first, and their cancer second. CTCA emphasizes a team approach in regards to treating the whole person, not just their cancer.

This year I’ll focus more on the similarities and differences between CTCA, MD Anderson, Johns Hopkins, and UCSF. Although I do not have a personal perspective as a patient at CTCA like I do with the other three hospitals, I’ll do my best to provide a fair analysis based on what their patient panels have to say. Many people have asked me why I did not seek an opinion from CTCA when searching for a neurosurgeon over the summer, and there are two straightforward answers. The first being that CTCA treats patients 18+, and I am just shy of 18. Secondly, CTCA is known for treating later staged cancers, and my brain tumor was still “low grade” (grade II).

Join us at the conference by watching from home: http://ctca.cancercenter.com/western-blogger-summit/

OR

If you’re looking for updates on and off throughout the day, keep an eye on my Twitter page! @Cblotner_

Check out the event schedule:

 

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!