TUMORS SUCK 2014 Part 3

TUMORS SUCK 2014 Part 2

Tumors Suck 2014 Part 1

TUMORS SUCK! 2014 PART 1

Tell That Tumor Off!

For all you patients with tumors or loved ones of patients with tumors this is your chance to “vent”. Leave a comment. We will not edit anything, but we do have one rule: PLEASE REFRAIN FROM USING RACIALLY, CULTURALLY, SEXUALLY, OR RELIGIOUSLY DEROGATORY WORDS! Remember anyone can read this. Thanks. 

Sup Brain Tumor

My name is Eric. I’m a 38 year old guy originally from Michigan. We met in Sept 2005. We had a 1.2 in 100,000 chance of meeting. Because of you I haven’t been able to return to work as a Physical Therapist, go surfing, run, swim, or bike. My balance is all messed up because of you. You scared the hell out of me, my parents, my family, and my friends. “F” you. Actually, thanks for making me stronger, smarter, and more focused. You picked the wrong guy to mess with. There are a bunch of smart people doing research to fight you. It’s only a matter of time before before someone finds a cure to fight you. Your days are numbered.

Sincerely,

Eric AKA “Galvez”

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!

Research: What it is and Three Fun Facts about It by Kayla Hutchinson, Rudy Mercado, Angelica Gutierrez, and Elizabeth Diane Cordero, Ph.D.

           Research plays a vital role in our world, but some of us don’t know what it is exactly or maybe have some bad impressions of it. Research—proper, scientific research, that is—is the careful, systematic collection and analysis of information. Admittedly, this is a pretty broad definition of what research is, but there are a lot of different ways that research is conducted and applied. It’s a good idea to be knowledgeable about what scientific research is comprised of, especially because we can help improve the lives of other people and the world around us if we make ourselves available to participate in it.

We’re not always aware of it, but we’re presented with statements about research findings fairly often. For instance, television, radio, the internet, and billboards all advertise products that claim to be effective, and the “evidence” for how products work is usually reports made by consumers who have tried the products and have benefited from them (for example,  9 out of 10 people who tried Miracle Product X lost an average of 15 lbs.!!).  These can technically be considered research findings in that the advertising agencies, or the companies they represent, set out to collect information about how/if their products work for people and to make sense of that information in some way (such as counting the number of people for whom the product worked). However, the findings described by advertisements are often based on information that was collected using less-than-careful methods, or those who are making the statements are not held very accountable for the truth behind them.   

Scientific research is quite different than the research that we hear about in advertisements. It is based on empirical (observed) findings from data (information) collected using the scientific method. This means that researchers learn from past studies of the phenomena they are interested in (the phenomena of interest are called “variables” because these are things that vary or change according to different circumstances), create hypotheses (educated guesses) based on past research about what circumstances will affect or be affected by their variables, and systematically measure their variables (for a more in-depth discussion of the scientific method, visit: http://science.howstuffworks.com/innovation/scientific-experiments/scientific-method6.htm). The scientific method makes sure that research is done in a controlled fashion so that the results are as unbiased as possible and so other researchers can evaluate the process the researchers used and whether or not something can be learned from the results of the study.  This last part is one of the most important points of research—to be able to learn something that can be used to help people or the world in some way.

            There’s a lot that can be said about research. Here are some of our favorite things about it:

1) Research is safe.

Research is sometimes viewed as negative. You might have seen something in a movie in which an evil scientist creates a sinister concoction that will turn human beings into monsters. Or maybe you’ve heard in the media about some kind of research that was done and that it harmed people or animals. Or maybe you have a funny feeling that researchers are cold and consider the people who participate in their studies their “guinea pigs.” In any event, people are sometimes apprehensive about participation in research because of all of the misconceptions they have been exposed to. And to be honest, there have been some immoral and unethical things done under the guise of research in the past.  When participation in research is discussed, people sometimes focus on extreme cases or exaggerated, often inaccurate, horror stories. However, government agencies and researchers over the years have developed safety measures to protect participants from harm. We have institutions that review, approve/disapprove of, and monitor what researchers are doing. Additionally, research participants have rights and these rights are protected throughout the research process. Most researchers are required to provide you with a document that explains the purpose of the research and describes what you will be asked to do so that you can provide informed consent to participate. As a participant, you have a right to know about any consequences or side effects that might be reasonably anticipated, how much time it will take to participate, and most importantly that you can end your participation at any time without experiencing penalties. Many people do not know that when participants want to stop their participation, they can. Participants should never feel forced to continue something if they do not want to. Also, information that you provide that has your name on it or any other type of information that would identify you is required to be kept private and guarded—this usually means locked up somehow, maybe in a filing cabinet or in a password-protected database.

            You might be thinking at this point, “Well, what if I’m asked to take a new drug or try out a new treatment? If it’s new, how can the researcher know it won’t hurt me?”  Sometimes researchers are testing out novel medications or medical procedures. That’s a good thing because there’s potential for interventions that are even better than the ones we have now, but it means that there are some unknown risks involved. This can be scary, but please know that there is some sort of history of reasoning or evidence behind the safety of a medication or procedure by the time researchers are allowed to administer it to human beings, such as data from animal subjects (who researchers are legally and ethically obligated to treat well) or from closely-related substances or techniques that have been used in human beings before. Correspondingly, researchers involved in these kinds of studies will monitor the health of their participants, and participants are given the opportunity to provide feedback about how and what they’re feeling. Bottom line: Participants’ safety is of utmost importance to researchers.

2) Research is essential.

Research is necessary and we need it for advancements in any type of field. How do we know how best to support cancer patients and survivors so that they are living their best lives? We need to conduct research, possibly ask cancer patients and survivors to talk with us about what they need. How do we know which medications will help us to feel better when we’re sick? We need to conduct research, maybe ask people to participate in clinical trials for new medications. Many of the medications that we take when we are feeling ill were part of an investigational drug program in the past and now we take them because researchers found that they are effective and help us feel better. These are the advances that researchers make for our benefit.

3) You can help change the world by participating in research.

Scientific research has improved the lives of people worldwide. The discovery of a particular phenomenon can help efforts to provide resources that can aid in alleviating world dilemmas or concerns. In addition, understanding what affects us can spark the curiosity of another researcher to apply that knowledge to future studies. What many people do not realize is that none of this would be possible without participants. Participants truly are researchers’ partners in the scientific process; without people providing researchers with information about whatever it is the researchers are studying, then researchers couldn’t make discoveries or advancements in any field of research.

Cancer-based research is a field that’s always in need of participants. Cancer is a life-changing illness that unfortunately affects many people, both directly and indirectly. Participation in research is one more way to fight and beat cancer, whether it’s research about medications, treatments, surgeries, or quality-of-life issues. The information that you give to researchers can be used to help others, and when—not if, but when—a cure is  found, you can look back and say that you were a part of saving the lives of the many people who might be diagnosed with cancer in the future. Participate in research and change the world! 

Have we convinced you? Here are some helpful links with more information about research, including how to participate:

Participating in Clinical Trials

The Center for Information and Study on Clinical Research Participation (CISCRP)

Cancer Prevention Research Studies

Pictured:  Rudy Mercado and Kayla Hutchinson

Kayla Hutchinson, Rudy Mercado, Angelica Gutierrez, and Dr. Elizabeth Cordero are proudly affiliated with the psychology program at the Imperial Valley campus of San Diego State University (SDSU-IV). Kayla and Rudy are undergraduate students, Angelica is a recent graduate, and Dr. Cordero is an associate professor.

Saying thanks to our "unsung heroes"

10/17/13 San Diego, CA USA.  The people who support a person undergoing treatment for a tumor/cancer deserve recognition. They helplessly stand by and watch their loved ones get weaker in front of their eyes. What many people don't realize is that when someone gets diagnosed with a tumor/cancer, A LOT of people are affected!  Of course the patient is affected the most, but the people who are on "stand-by" as a loved one get weaker need to be recognized.  It is frustrating to watch a loved one's struggle against these diseases.  There are no words to express the gratitude for people who were at our side through the rough times.  The support received from these special people, can easily be taken for granted.   They deserve recognition.  We decided that there needs to be an event organized by survivors to honor the people that were there for us.  We wanted to honor our friends, family, and fellow survivors with unique toasts!  The focus of the event is not on the survivors, but on the people that helped us through a very difficult time!  Check out the videos from the 2013 event:

The 2013 Tumors Suck Part 5:  Celebration of Life video

Tumors Suck NewsFlash videos @ 2013 Celebration of Life for International Tumors Suck Day

These diseases transform everyone.  We can decide how we are transformed.  There are 3 options:

1. dive – psychologically succumb to the disease
2. survive – weather the storm of an intimidating diagnosis
3. thrive – become proactive in the fight against these diseases 

Patients cannot learn to "thrive" alone.  Support is needed from family, friends, and fellow survivors.  On 10/17/13, we wanted to recognize these people for helping us through a very difficult time!

Please help us continue to grow!  We are now planning more international speaking engagements!  We could really use your support.  You can be a part of a new strategy to fight ALL tumors/cancer... ATTITUDE... this ain't no pity party.

We'll send you some TUMORS SUCK stickers and put you in the next video with your online donation!

Kick mAss Thriver: Damian del Rio

In 1987, at age 15, I was diagnosed with Hodgkin’s Lymphoma. Five weeks of radiation therapy moved me into remission for 13 years. In 2001 my system relapsed for the 1st time. It was a huge surprise but after my treatment success in 1987 I was confident my system would quickly move into remission again. However, in 2003 I received bad news from my doctor when he called with news of the 2nd relapse. Given the seriousness of the situation I was treated with a toxic chemotherapy regimen and underwent a stem cell transplant. Although the process went smoothly my oncologist warned there was only about a 50% chance the treatment would work. I was frustrated with the prognosis but understood I needed to make some major decisions on how to spend my time given the uncertainty of my future. I left work in 2006 after the 3rd relapse and my oncologist was not optimistic about my prognosis. They searched for recent advancements in treatment, involved me in experimental trials and gave me more chemotherapy in 2008 to help with keeping tumors from growing too big during my 4th relapse.

As you might expect I was worried about my health but I was also exhausted from the process. I was in a violent battle with cancer but also dealing with divorce, relocation, the anxiety of falling behind in my career, adjusting to disability benefits and unfortunately having to sell my home. It was overwhelming. I wanted to keep busy but struggled with what to do as doctors were telling me my system was not responding to the treatment. Walking in circles, I’d ask myself where had I come from and how did I arrive here. Doctors told me to expect more treatment and not to return to work. I was stuck in neutral without responsibilities, commitments, goals or even a simple purpose. Stuck with nothing to do but wait caused confusion and aggravation I had never been exposed to.

In 2011 I reached out to the San Diego chapter of Stupid Cancer. It took me 10 years to ask for help but once I did I was quickly connected to a network of resources starting with the mAss Kickers Foundation. From there I met amazing people who were going through a similar experience and had so much to share. I learned of many organizations that were established to help people and their families being challenged by cancer. These groups include the LiveStrong Foundation, The Patient’s Advocacy Group, Imerman Angels and others. Within days I was connected to people who helped me emotionally, spiritually and practically. I found a healthcare counselor that assisted me in addressing medical billing and explained Medicare options. Imerman Angeles connected me with a peer mentor who had a similar story and some valuable advice.

I regret not having reached out for help earlier and now want to support Eric in his mission to help patient’s and their families fight stigma associated with cancer and change perceptions. mAss Kickers Foundation has done most of it’s work in the US but is branching out to places that don’t have a local chapter of Stupid Cancer. Susan G. Komen, Leukemia and Lymphoma Society, American Cancer Society and so many other groups don’t have a strong presence outside the United States. For many cultures the stigma associated with cancer hinders communities in establishing support groups and unfortunately the resources they provide. mAss Kickers Foundation wants to help in changing peoples attitudes. Eric and I want everyone to know that cancer is not always death sentence. 

Please Support my mAss Kickers page as we take post-treatment tumor/cancer "thrivership" GLOBAL!.

TC RAM PATIENT SEMINAR 2013

Click here for details and to register for this free conference.

Kickin mAss in Asia 2013 Part 1 Hawaii

Last week mAss Kickers Foundation had the opportunity to speak to Social Work Students and Social Work faculty at the University of Hawaii – Manoa. 3 tumor/cancer thrivers shared their stories and resources that they utilized to pass on to their patients. Marc Rodriguiez, Hannah Hansen, and Eric Galvez presented their unique and often times humorous perspectives as young adult survivors turned “tumor/cancer thrivers.” Survivorship is only the first step in recovery from these diseases. It was determined that each individual survivor will move on to “tumor/cancer thrivership” at their own pace. “A Thriver” is someone who gets an intimidating tumor/cancer diagnosis and REFUSES to let it control their life.  They become LEADERS in the fight against all forms of tumors/ cancer.

Along with the speaking engagements at University of Hawaii, this group of thrivers had the opportunity to take in a few sites in Honolulu and experience the authentic Hawaiian cuisine. The Honolulu zoo, Dole Plantation, and of course the beautiful beach on the west side of the island were a few of the sites they were able to visit in their short time on Honolulu. Future trips to speak in Hawaii are in the works to talk about “thrivership” life after an intimidating tumor/cancer diagnosis.

Later this summer mAss Kickers Foundation has plans to go to Tokyo, Japan and Manila, Philippines to speak to future physicians and tumor/cancer patients about “thrivership”. Stay tuned.
More trips are in the work next year!