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The Colon Club – Providing Support and Healing to Those Touched By Colorectal Cancer

The Colon Club – WE Have Cancer

The guests for this episode were Phoung Ly Gallagher, Executive Vice President, and Kristina Smith, Vice President of Communications for The Colon Club.  The Colon Club provides resources for those touched by colorectal cancer.

During our conversation we discussed:

  • The story behind the beginning of The Colon Club
  • The Colon Club’s Four pillars: Colon Talk, The Kimberly Fund, the blog and the On The Rise magazine.
  • Kristina’s own experience as a recipient of The Kimberly Fund
  • Phuong’s connection to colorectal cancer
  • The upcoming Colon Camp retreat and the life-changing experiences attendees can expect.

Apply to Attend the 2019 Colon Camp – Deadline is February 1, 2019!

To apply visit: https://wehavecancershow.com/colonclub

Links Mentioned In This Episode

Colon Club – http://colonclub.com

Colon Talk – http://coloncancersupport.colonclub.com/viewforum.php?f=1

The Kimberly Fund – https://colondar.wufoo.com/forms/r1lbim8y1rxx58x/

On The Rise Magazine – http://colonclub.com/on-the-rise/

Our First Interview With Kristina Smith – https://wehavecancershow.com/054

Our Interview With Diana Sloan – https://wehavecancershow.com/077

Our Interview With Riley Castro – https://wehavecancershow.com/061

Our Interview With Nikki Moore – https://wehavecancershow.com/090

The Five Star Retreat In Nunnelly, Tennessee – http://www.fivestarretreat.com

Connect With The Colon Club

On Instagram – https://instagram.com/colonclub

On Twitter – https://twitter.com/colonclub

On Facebook – https://www.facebook.com/colonclub/

Visit Their Website – http://colonclub.com

WE Have Cancer Links

Subscribe to the show:

Follow WE Have Cancer on Social Media

Join our private Facebook group- https://www.facebook.com/groups/wehavecancershow/

Know someone touched by cancer who has an inspiring story?

Nominate a guest to appear on the podcast- https://wehavecancershow.com/guest

Email Lee

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Teaching Hope and Happiness in the Face of Cancer

Gina Benedetti

Teaching Hope and Happiness in the Face of Cancer, With Gina Benedetti

This story of Gina’s journey appeared in the 2017 issue of On The Rise and was written by our late friend, Dr. Tom Marsilje.

Gina Benedetti may be about the happiest and most hopeful person diagnosed with advanced colorectal cancer (CRC) that you have ever met – and her hope and happiness are infectious! This comes partially from her background as a first grade teacher, where a positive attitude rules the day. With cancer, this attitude has not changed, just the audience she can project upon.

Gina was 30 years old when she changed careers to become a teacher. “I became much more positive, optimistic, and happy when I decided to do that! That shifted everything in my life.”

Only a few years later, her cancer diagnosis gave her a new opportunity to further improve her life. “I’m a better mother and a better teacher, a better friend … a better person for going through this. My heart got bigger. I just want to help people even in the smallest things in life.”

Sneaky Symptoms
She was pregnant and loving it when, unbeknownst to her, her cancer story started. Symptoms like stomach cramps, weight loss, and urges to go to the bathroom began showing up shortly after giving birth. These symptoms escalated, but she continued to think they were just complications from her recent pregnancy.

Due to a proactive medical team, she was diagnosed with CRC within only a few months, a lucky break she credits with potentially saving her life. She woke up from her colon resection surgery thinking, “Oh I don’t have stomach cramps! I feel great!”

It was tough on Gina not being able to hold her newborn son for the six weeks of surgery recovery. She now focuses on the positive, however: Because of her cancer, she has been able to be home with her young son for the past nine months, something that would not have been possible with her normal full-time teaching job.

Staying Positive
Although she was diagnosed with advanced colorectal cancer (Stage 3C) in her mid-30s, Gina approached her diagnosis and treatment with a positivity that should be a beacon to others. That is something that hits you when you meet Gina. She seems to always be smiling – and it is hard not to smile yourself when you are near her!

Gina was excited to apply to be a Featured Survivor in the Colondar 2.0. In her mind it was a natural extension of her teaching background. “I always thought that the way I would leave my footprint or make the world better would be by teaching. And now I think that has totally changed and that this is how I’m going to change the world,” she says. “I am going to make a big difference doing this. I feel like this is what I was meant to do!”

She looks forward to spreading additional CRC advocacy to the west coast. She wants people to know it’s not an old man’s disease. Anyone with symptoms should listen to their body. Young people should be screened. And they should push their doctors if they have symptoms. “I was lucky with my doctors,” she says. “Many others were not. I was a sneeze away from Stage IV.”

Gina’s thoughts on her immediate future continue to be as positive as one can imagine. “This has been a blessing in disguise. I am confident that I won’t have a recurrence and that this was a hiccup in a very charmed life,” she says. “I am an extremely strong and positive person that is determined to make this experience a learning experience for others.”

With her constant smile, Gina and her positive approach to advanced cancer will do just that – multiplying and spreading the blessings of her diagnosis many times over. She is excited to embark on the ultimate teaching experience … now to a much larger group than her beloved first-grade classroom.

Side Bar: Turning the Tide
Chemotherapy for Stage 3 CRC is tough. Some patients are not able to complete all 12 rounds of FOLFOX, but everyone tries their best because this chemotherapy is potentially curative. The first two infusions were very rough on Gina. But then, with the help of a cancer support group, she started to think of chemo as a positive – something meant to kill cancer and save her life.

With that mental switch, she started to give herself treats on chemo days. Her husband helped by keeping an air of levity around infusions. Gina also hired a personal trainer to use exercise during chemo as therapy. Her trainer would tell her, “There are no excuses. This is your path. You can’t feel sorry for yourself!”

Gina credits these actions as turning the tide on her chemo side effects, making them much more tolerable.

What is the one thing she most wants to teach to fellow CRC survivors? “Find a light in in everything. Getting cancer sucks, it really does. Find little things that make your day brighter … Have a positive attitude and have hope.”

Links mentioned in this episode:

Gina on Twitter – https://twitter.com/benedettigina

Gina on Instagram – https://www.instagram.com/ginab44/

 

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Colon Cancer’s Tattooed Pinup Girl, Tara Principali

Tara Principali

Colon Cancer’s Tattooed Pinup, Tara Principali

Tara (pronounced Tar-uh) Principali was diagnosed with Stage 2 rectal cancer five years ago at the age of 30. Though she once lived an unhealthy lifestyle, weighing as much as 270 lbs., she dedicated herself to fitness and healthy eating prior to her diagnosis and lost 130 lbs. In addition to the rectal cancer diagnosis Tara also learned she had Lynch Syndrome.

After a partial colectomy and temporary ileostomy, Tara was considered in remission. She didn’t undergo any chemotherapy or radiation, since her cancer was caught early. Six months after her ileostomy and j-pouch surgery, Tara’s symptoms returned. She went back to her doctor who ran a series of tests and diagnosed her with Crohn’s Disease.

Tara now has a “new normal.” She eats a healthy diet and is a competitive bodybuilder.

Related Links

Tara’s story from On The Rise, produced by the Colon Club

Tara on Instagram

Lynch Syndrome

Ileostomy

J-Pouch

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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

 

 

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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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