TUMORS SUCK 2014 Part 2

Tumors Suck 2014 Part 1

TUMORS SUCK! 2014 PART 1

               Becky MacK Goes to Washington

        Every year, in the United States, more than one million people are diagnosed with cancer and every year, more than 500,000 people die of cancer.  That is one big ball of stunning, unbelievable and scary to say the very least.  Those facts shouldn’t just scare you, though; they should catapult you into action.  When I was diagnosed with Medullary thyroid cancer and learned that there was no cure for my disease, suddenly whether or not clinical trials would be funded was important to me.  Suddenly, my priorities consisted of things like making sure that treatments and healthcare would be available when I needed them.  The National Institute of Health, comprehensive cancer centers and new drug developments became my central focus. 

That is why I involved myself with the American Cancer Society Cancer Action Network (ACS CAN).

 ACS CAN works with lawmakers to ensure that cancer is a national priority.  The organization works every single day advocating for public policies in the United States that are helping to put an end to cancer and cancer disparities.    More importantly to me, the organization gives me a loud, powerful and effective voice.  ACS CAN gives me knowledge in the land of cancer legislation keeps me up to date on the latest laws that affect cancer patients across the United States.  ACS CAN gives me options when my cancer tries to take them away.

  On Tuesday, September 10^th, 2013, I joined ACS CAN’s staff and volunteers in Washington, D.C.  Together, we covered our capital building in a sea of blue ACS CAN shirts and advocated, educated and told our stories.    A total of 450 volunteers, including 256 cancer survivors attended 463 meetings with lawmakers, demanding that cancer be seen as a national priority.  I was fortunate enough to be a part of this important lobby day and very loudly and proudly represented Florida’s 19^th Congressional district.  Together, we asked for lawmakers to consider three things:

First, we asked lawmakers to replace funding for cancer research that was taken away when the sequestration occurred.  Specifically, we asked that funding for the National Institute of Health and the National Cancer Institute to be restored and for continued funding for both cancer prevention and early detection at the Center for Disease Control.  I am living with a type of cancer that does not have a complete, systemic cure and this funding is essential for people like me because we depend heavily on cancer research and clinical trials.  Less funding means less research, less drug development and less hope for my cure.  Less funding means limited access to clinical trials.  Less funding means less lives are saved.  I will not accept that.  It’s time for less cancer and more funding, research and options. 

Second, we asked lawmakers to support legislation that encourages palliative care or quality of life, something that has been proven to decrease healthcare costs and improve the quality and length of life in cancer patients.   When I met with members of Congress, I explained to them that cancer comes with physical pain, nausea, anxiety and emotional distress.  Palliative care involves addressing the needs of the whole patient, not just the disease and, while palliative care does involve things like hospice and end of life care, it doesn’t begin there.  Medical professionals make use of palliative care at the beginning of a patient’s diagnosis and continue with it during treatment.  Every cancer patient has the right to be free of pain and nausea and to have his/her entire self treated.

 I will never forget laying in an MRI scan for over an hour.  I was required to lie completely still the entire time, but all I did was worry and cry.  I knew that the radiologist was looking for tumors and I panicked at the thought.  I couldn’t stay still and as I sobbed, my entire body shook.  Because I was moving so much, we had to repeat the procedure the following week.  This time, the nurse offered to give me something to calm down and rest before the procedure began.  Repeating the procedure unnecessarily cost both me and the hospital more money.  Had someone addressed my emotional needs the first time, it not only would have saved money, it would have helped my anxiety and saved time.  That is palliative care.  Yes, we need to treat the cancer, but we also need to consider every other aspect of a cancer patient’s experience. 

Finally, we requested that Congress increase the federal cigarette tax by 94 cents.  An increase in the federal cigarette tax has been proven to deter youth from smoking and decrease healthcare costs.  I recently learned that for every pack of cigarettes a smoker purchases, it adds $10.47 to the United States economy.  Nothing, and I mean absolutely nothing, good comes from smoking a cigarette or using any type of tobacco product.  

  It isn't just research that is going to help find cures for people like me.  It is also the public policies that allow for the implementation and funding of that research.  Know what’s happening in your community.  Demand that your lawmakers at the local, state and federal levels are paying attention to their constituents, people that are affected by this disease every single day.  Let’s hold them accountable.  I know I will.

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!

TUMORS SUCK 2013 PART 6: San Diego Asian Film Festival

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.