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Diagnosed With Colorectal Cancer at 28, With Kevin Hays

evin Hays

Diagnosed With Colon Cancer at 28, With Kevin Hays

Kevin Hays was diagnosed with Stage IIc colon cancer at age 28.  He went through surgery and chemo.  After finishing chemo he ran in the Buffalo Undy Run to boost awareness and afterwards volunteered to help with organizing for the the next year (this year!).  Working through the Buffalo Undy Run | Walk planning he helped resurrect the Blue Bash in Buffalo to broaden our reach with a new audience.  He also developed a new awareness initiative targeting the construction and real estate development industries called the Blue Hope Hard Hat Initiative (#protectyourass) as a way to help promote the 80% by 2018 initiative. To raise awareness, hundreds of construction workers and site managers in the Buffalo area are sporting the blue hard hats emblazoned with a comical, but serious message: “Protect Your Ass.” Since early January, he’s sold 600 of the blue hard hats at cost, about $10 apiece, with a goal of helping to boost colorectal screening rates.

To learn more about the Blue Hope Hard Hat initiative and to order your very own Blue Hard Hat, visit:

protectyourass.net

Kicking Cancer to the Curb, With Allyson Phelan-Eagan

Allyson Phelan-Eagan

Kicking Cancer to the Curb With Allyson Phelan-Eagan

Allyson Phelan-Eagan was diagnosed with Stage 3 colorectal cancer in February of 2012. After 8 months of chemotherapy, 2 months of radiation, 2 major surgeries, several outpatient procedures and a whole lot of pain she finally crushed cancer and began to immediately give back by producing interviews with doctors, survivors, caretakers, health professionals and more. She also began mentoring those newly diagnosed and speaking about her experience, the challenges and how to overcome cancer not only physically but also mentally and emotionally as well.  Her main motivation to LIVE were her children, Sophia and Connor who we only 4 and 6 at the time.  Allyson said nothing was going to stop her from raising them… including cancer.

Her #allaboutthatbassbootycampaign is designed to bring attention to the part of our body many people want to ignore. She states, “There is no need to feel embarrassed about getting a colonoscopy. We need to embrace our Booty and get checked. It can save your life.”

All of the models in Allyson’s, “BOOTY  PATROL,”  have  been directly affected by this dreadful disease called cancer. It has taken the lives of some of our dearest loved ones.

Allyson’s interview with Colon Cancer Alliance CEO, Michael Sapienza:

 

Click here to read Allyson’s interview in Viva Glam Magazine

Permission to Mourn; A New Way to Do Grief, With Tom Zuba

Tom Zuba

Permission to Mourn; A New Way to Do Grief, With Tom Zuba

I had the honor and privilege of interviewing Tom Zuba for this episode of The Colon Cancer Podcast. His book Permission to Mourn; A New Way to Do Grief (affiliate link) is, in my opinion, a book about love. In it, Tom illustrates that when someone you love dies, it is possible to love again; to love yourself, to love the one you mourn and to love life.

I hope that you will find comfort in Tom’s words as I did and if you know someone who has experienced grief – who hasn’t? – please share this episode with them.

Tom Zuba on The Oprah Winfrey Show:

Tom Zuba’s 10 Things:

Never Too Young For Colorectal Cancer, With Sandi Stupica

Sandi Stupica

Never Too Young For Colorectal Cancer, With Sandi Stupica

My name is Sandi Stupica and I live in Ypsilanti, MI. This is my sixth year as a high school English teacher at Ypsilanti New Tech. Well, kind of my sixth year. I have been out on long-term disability since September to recover from my two surgeries: the surgery to remove the tumor and, therefore, get the ostomy; and the surgery to remove the ostomy and get the j-pouch. It seems that the surgeries have been successful and I’m feeling much better now! I return to work on April 12trh. Woot!
My Diagnosis
My first year of teaching was in rural, middle-of-the-state Okeechobee, FL. I grew up in Michigan so I wanted to try and find a job in my home state for my second year of teaching. Even though I came back to Michigan, I met some great people in Chobee and stayed in contact via Facebook. In November of 2014, Jason, who was a 32-year-old teacher in Florida, posted that he was diagnosed with Stage 1 colorectal cancer (Later, he would find out that he actually had stage 3). He posted some of the symptoms and why he went to the doctor. I had been feeling discomfort like he had, but I thought I had a lactose intolerance or gluten intolerance. Until 2015, I had no signs of rectal bleeding. To be safe, I reached out to him, as well as doctors. Luckily, my doctor recommended a colonoscopy. I had over forty polyps, and a two-inch tumor closer to my rectum. I had stage 3 colorectal cancer at 29-years-old.
Major Milestones
Having colorectal cancer is a battle. But, I also took on the battle of fertility preservation just in case my reproductive system reacted harshly to the chemotherapy. I decided to not have radiation to increase my chances of fertility in the future. My milestones to colorectal survival are the following: fertility preservation, chemotherapy (with oxaliplatin, leucovorin, and Fulfox5), surgery to remove the tumor and get the ostomy, and the final surgery of the J Pouch. I worked through the fertility preservation and chemotherapy.

Raising Awareness About Colon Cancer in the Latino Community, With Jasmin Mejia

Jasmin Mejia photo

Jasmin Mejia has worked tirelessly to raise awareness about Colon Cancer in the Latino Community. An active member of the Arizona chapter of the Colon Cancer Alliance, she was recognized by the Colon Cancer Alliance for her efforts. Here is an excerpt from her interview from their website, ccalliance.org:

Why did you get involved as a Colon Cancer Alliance volunteer? 

I decided to get involved because I wanted to find a way to honor my mother’s memory. She lost her fight against colon cancer at the young age of 42 years old. I was 19 years old when she died and I was her sole care taker. She had surgery early on to try and stop the cancer but it spread quickly throughout her body. After a long day of work, I would come home to care for her, help her change her colostomy bag, bath her and make sure she ate. I also helped with my younger siblings; the youngest was 5 years old at the time.

At that time, there was so little that we knew about this cancer and resources were nowhere to be found. One of the absolute hardest parts of having been through this experience was that, because her doctor was not bilingual, I was the one who had to tell my mom she wasn’t going to make it and would die from this horrible cancer. I volunteer because I don’t want anyone else to have this experience.

Why is Latino outreach vital when it comes to colon cancer? 

I think outreach to the Latino community is vital because prevention is not part of the Latino culture. Most Latinos go to the doctor only when they feel sick, especially the older generation. We also tend to be a lot more conservative when it comes to talking about our bodies, so getting a colonoscopy is sometimes viewed as embarrassing and no one wants to talk about it or acknowledge that they might need to have one done. With our current efforts in Latino outreach, hopefully we can continue moving this dial.

What do you get out of your volunteerism? 

I get a sense of hope that I may have saved a life by simply talking to others about my experience with my mom. Volunteering is what I do to honor my mom’s memory.

What would you like people to know about colon cancer? 

I would love for people to know that prevention is the most effective way to fight this cancer and beat it. Also, the colonoscopy itself is easy and the prep is nothing, especially if you consider that it could save your life!

– See more at: http://ccalliance.org/blog/volunteer-spotlight-jasmin-mejia/#sthash.LbVIbE09.dpuf

Sue Kidera Returns With an Update on SBRT and Lonsurf

Sue Kidera

Sue Kidera

In this episode of The Colon Cancer Podcast, Sue Kidera, a stage 4 colon cancer survivor, returns to the show. She discusses her 10 year journey with colon cancer and her experience with Stereotactic Body Radiation Therapy (SBRT) and Lonsurf. Sue also talks about how, and why, she takes such an active role in her treatment plan and offers suggestions on how other patients can do the same.

 

Founder of “Dress in Blue Day,” Anita Mitchell Isler

Anita Mitchell Isler

Anita Mitchell Isler

In this episode, I have the pleasure of interviewing Anita Mitchell Isler, a stage 4 colon cancer survivor and the woman who founded “Dress in Blue Day.” Anita is also the founder of  Colon STARS,  a non-profit organization who’s mission is to save lives by educating people on the importance of colorectal cancer screening.

Join me as Anita shares her story of beating stage 4 colon cancer and how that motivated her to work tirelessly to make a difference in the lives of people affected by colon cancer in the Seattle, Washington area and across North America.

Inspired By Her Daughter’s Memory, She Battles Colon Cancer

Stafon Harris-Jackson

Inspired by her daughter’s memory, she fights Colon Cancer.

Stafon Harris-Jackson radiates happiness and positivity. So much so, that you may not know she survived colon cancer twice—years after losing her daughter to childhood cancer. While many may have felt defeated, Stafon uses these experiences to help others through her newly formed cancer foundation and speaking engagements. You may have even spotted the 46-year-old Texas native at this year’s National Conference or Dallas/Fort Worth Undy Run/Walk. We’re excited to honor this Renaissance woman as our December Hero of the Month!

Can you tell me a little about yourself?

My purpose is to help—I’m a philanthropist and I talk about cancer every day. Sometimes I get emotional when I talk about it, but it feels good because I know my purpose is bigger than me.

I was introduced to cancer through my first daughter. I married at 18, didn’t attend college and had a child. I went through a lot during that marriage and also received another emotional blow when my daughter was diagnosed with stage IV Neuroblastoma in July 1998. Our doctors said she was terminal and gave us 14 more months with her—and they were right. She passed away at just three years old in September 1999. Eleven years later, on April 19, 2010, I was diagnosed with colon cancer.

How were you diagnosed with colon cancer?

I was a 40-year-old healthy woman with no family history and no recognizable symptoms. One day, I fell down while in my home alone. I tried to crawl to the phone to call for an ambulance, but I passed out. Luckily, my daughter came home early from a day of bowling with her friends to find me on the floor. I was rushed to the hospital and learned that I passed out because my appendix burst—I had perforation of the colon and a piece of my colon broke a part and wrapped itself around my appendix.

I recovered, but the cancer returned in 2013. It was hard this time because I couldn’t work and didn’t know about resources like the Colon Cancer Alliance and all of the great things the organization is doing. Now I know more and use this knowledge to spread colon cancer awareness, especially in the Hispanic and African American communities.

How did you learn about the Colon Cancer Alliance and what made you want to get involved?

Stefon Harris-Jackson

While searching online, I stumbled on the Terrance Howard video where he spoke about his connection to colon cancer and I thought, “I wish I’d known about the Colon Cancer Alliance! They could have helped me when I was sick.” Then, I went to the website, subscribed to the newsletter and learned about the National Conference. I’ve wanted to attend the conference since that moment, but couldn’t afford it. This year, however, I received an email about conference scholarships and applied; I was so happy to be one of the survivors chosen to attend!

Last month, I created a team for the Dallas/Fort Worth Undy and recruited people to join me—I want to spread the word about the Colon Cancer Alliance in Texas.

You’re so passionate about raising colon cancer awareness. What drives this passion?

When you look death in the face, it changes your life. My two battles literally changed my life. I realize now that I have a purpose. I do speaking engagements where I tell people the truth about living with colon cancer, screening and about this disease being preventable and treatable. I also talk about things people don’t want to talk about like looking at your stool, because if I don’t talk about it, who will?

You’re also involved in the cancer community at large; tell us about the foundation you started.  

Before my daughter passed, she said, “Mommy, when I become an angel, please don’t forget me.” That motivated me. I had no clue what I would do, but I knew I didn’t want to let my child down.

I formed the CNJ Cancer Foundation, named after my daughter Cherae Nekole Jackson, in 2014, and received nonprofit status this year. The CNJ Cancer Foundation is dedicated to assisting families affected by colon cancer and childhood cancer with financial and emotional support; this could mean anything from providing family counseling to simply helping families in need buy groceries.

What is your ultimate message?

My ultimate goal is to let everyone know that God has your back—keep living and keep believing. And in the words of my three-year-old, “Keep smiling.”

 

Cherae_Logo_Final2

Promoting Colon Cancer Screening in the African American Community, With Kim Hall Jackson

Kim Hall Jackson headshotKim Hall Jackson is a seven year survivor of rectal cancer. She was first diagnosed in December 2008, as Stage I. She had a bowel resection and temporary ileostomy. Two weeks after surgery she went to get her staples removed and was informed her cancer had been re-staged to Stage III rectal cancer. She began looking for an oncology and radiation team. She then started treatment after her ileostomy reversal.

From her Colon Club interview:

WHAT HAS SURVIVING RECTAL CANCER TAUGHT YOU…

About life? Everything is not as important as it used to be. The important things are even more important.

About family? My family is strong, supportive and brave.

About your body? Listen to your body. It’s your body; you should know it. You only get one so you should know everything about it. Don’t be nonchalant – don’t assume it will pass. Be an advocate for your healthcare and treatment.

Do you do anything now that you didn’t before, thanks to cancer? I tell people to get screened and to not think it can’t happen to you because you’re an African American, under age 50 or even because you work out or took dance. Before I was diagnosed, I didn’t think cancer ran in my circle. While there may not be a direct family history (there may be some cancer here and there) it had to start somewhere. Don’t assume it’s not going to start with you.

What’s your message to the African American community? Our risk is higher and we are normally diagnosed at a later stage. We have a higher death occurrence rate because we’re normally diagnosed.

Has cancer changed your life for the better in any ways? I don’t save my favorite things like shoes, outfits, and china – I may have been saving once but I use it now. I tell people that I love them more. Since being diagnosed, I’ve joined cancer support groups, done colon cancer walks and jumped on any opportunity to do an event and talk to people. I’ve also become part of the Buddy System to help others through it.

What do you hope your message and survival story will do for others? I hope they look at me and think, “Is that a black girl? Wow that can happen! She looks like an everyday person; it can happen to me. I’m going to get screened.”

Listen to Kim talk about the “Black and Blues Brunch,” the event she created to help raise awareness about the importance of colon cancer screenings in the African American community: Click Here

 

 

Never Too Young for Colorectal Cancer, With Marty Andrews

Marty Andrew

Never Too Young for Colorectal Cancer, With Marty Andrews

Marty Andrews was diagnosed with Stage 3 Rectal Cancer at the age of 33. As he tells his story:

I was living what I thought to be the normal life of a 33 year-old man. I was married for almost three years and my career had reached a new high. The future looked bright and much time was spent talking about buying a home and starting a family.

This all changed on May 12, 2009. I had been going to the doctor for several months because of some unusual bowel symptoms. Like most men, I didn’t go the doctor often, but these symptoms were really starting to negatively impact my life. I remember the first trip to his office. I was embarrassed and, given my symptoms, terrified at the thought of what kind of tests he was going to do. I was relieved when he simply recommended that I start taking a fiber supplement.

Unfortunately, my symptoms persisted. My life was beginning to revolve around where the bathroom was. As soon as I entered a store or restaurant, it was the first thing I looked for. I traveled a lot for work, so I began sitting in the back of the plane so I could be near the restroom.

Eventually, I became my own best advocate with the doctors. I knew something was wrong and I was sick and tired of the life I was living. My own research indicated that it could be colorectal cancer, but I quickly dismissed that because of my age and lack of cancer in my family history. I discussed other possibilities with the doctor, and my persistence finally paid off when he referred me to a specialist. After my initial visit, the doctor believed I had Crohn’s disease or colitis but would need to conduct a colonoscopy to confirm. I was so excited to be getting somewhere that I actually greeted a colonoscopy with open arms. (Remember, just a few months earlier, I had been terrified to even go to the doctor and nearly skipped out of his office after simply being prescribed fiber supplements.)

My colonoscopy was set for May 12, 2009. The rest of my family lives in Seattle, and all of them had been supporting me from a distance. I remember getting a lot of texts that morning wishing me “good luck.” I was awake during the procedure, but was heavily sedated. I remember watching the colonoscopy on the digital screen in front of me. At one point, the doctors discovered the abnormality that was causing my symptoms. I assumed it was Crohn’s or colitis, and was relieved to finally have an answer.

The doctor came in shortly after the procedure and told us (my wife was with me) that she had bad news. It was cancer. I remember thinking, this must be sort of mistake. She must have the wrong room. I can recall feeling very hot and my ears ringing. I thought to myself, I am going to die…and what am I going to do between now and death?? The doctor was still talking but I wasn’t listening. I thought, all cancers are not the same and maybe I was overreacting. But after looking at my wife’s face and seeing the red welts that had appeared on her neck, I quickly realized that was not the case. I snapped out of my haze and asked the doctor what was next. All she could tell me was that I needed to have surgery. The crazy thing about being diagnosed with cancer is 10 minutes later you’re out on the streets and back in the world.

After I got home, I called my family and told everyone the news. I felt terrible about unloading it on everyone. None of it seemed real at the time, and everyone had a lot of questions…and I didn’t have any answers.

I woke up the next morning and thought, did that really happen yesterday? Do I really have cancer? Once I realized it wasn’t just a bad dream, I broke into tears. Reality was setting in…and I was scared. I didn’t want to die.

The next step was to schedule appointments with other doctors. I’m not sure if there’s anything more frustrating than being told that you have cancer, and then calling for follow-up consults and being told that the next available appointment is in four-five weeks. I had another meltdown. I thought to myself, Hello!! I am dying here and the quickest you can get me in is a month! Will I even be alive then? Again, being persistent is my best advice to getting things to move quickly. You have to be your own best advocate.

Through a series of visits, it was determined that I had stage III colorectal cancer. If the thought of dying was not bad enough, I started thinking about whether my career (which I had worked very hard at building) may now be over. And the thought of paying medical bills for the rest of my life was overwhelming.

Over the period of the next 16 months, I had a grueling fight for my life. I underwent six weeks of chemotherapy and radiation, followed by surgery to remove a section of my colon. Complications during surgery required me to temporarily use an ostomy bag, which just prolonged the process. After surgery, I had another six months of chemotherapy. I believe cancer is just as much of a mental battle as it is physical. For me, the mental battle may have been even worse. My post-surgery chemotherapy regimen was every other week for a total of 12 treatments. It slowly breaks you down, and there is nothing worse than starting to feel better, and then having to go back in and do it all over again. After I finished chemo, I had a final surgery to remove the ostomy bag.

I was excited to get back to a normal life, but quickly realized the life I had before cancer was gone. Even though I had a clean bill of health, I realized that I still needed frequent check-ups and close monitoring. This was an adjustment, and it took time to not let the fear of recurrence run my life. I learned to accept that this is now a part of me and who I am.

Shortly after returning to “normal life,” it became apparent that I although I had beat cancer, cancer beat my marriage. The divorce brought on a completely new set of challenges.

Today I find myself believing that everything happens for a reason. I’m happy to be alive and know that there is no guarantee for tomorrow. I plan for the future but live for today. All of my initial fears were overcome. My career is thriving (I was promoted a year after returning to work).

No one wants cancer but it changes your perspective on everything. You learn what matters most in life, who loves you and who you can live without.

I now have an outlet and a passion to help those affected by this disease. I actively participate in a buddy program with the Colon Cancer Alliance. The program allows me to share my story with newly-diagnosed patients and offer them hope. This is one of the most rewarding things I do. For me, it really makes the long journey and fight worthwhile when I can help and inspire others. I feel very strongly about educating the young that this is not an “old person disease” that only affects those with a history. The posters on the walls in the doctor’s office are wrong and I am proof of that.

Once you have cancer, you join a group of brothers and sisters for a lifetime. You meet fellow survivors and have an instant connection. If you ever hear those words, “you have cancer,” you will never feel more alone. But know that you are not alone. You will be tested but you have to fight the fight. Give it all you have and you too will see the sun shine a little brighter and the grass a little greener in a new life. A life after cancer…

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