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Honoring Her Husband’s Memory Through Her Advocacy Work, With Dana Georges

Dana Georges

Honoring Her Husband’s Memory Through Her Advocacy Work, With Dana Georges

I had the pleasure of meeting Dana at the 12th annual Call-on Congress.

She became very involved in cancer advocacy efforts after losing her husband Jean to colon cancer on Mother’s Day, 2015. He was only 43-years-old. Her 7-year-old  son will need to begin screening at age 25. Also, her32-year-old brother recently had precancerous cells found in a polyp that was discovered during a colonoscopy due to rectal bleeding.

Since her husband’s passing, she has been to Capital Hill twice to meet with her federal  lawmakers in an effort to increase funds for cancer research. She also focuses on meeting with her state and local lawmakers throughout the year. In addition to her advocacy work with Fight CRC, she also works with The American Cancer Society’s Cancer Action Network.


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/

 

Honoring Her Husband’s Legacy With Nikki Moore of #LiveMoore

Nikki Moore

Honoring Her Husband’s Legacy With Nikki Moore of #LiveMoore

Matt and Nikki Moore met while they were in college. They fell in love and were married a short time later. In late 2015, while pregnant with their first child, Matt was diagnosed with Stage IV Colon Cancer at the age of 32. Before his death, Matt wanted to inspire people to live life to the fullest so he created Live Moore.

Links mentioned in this episode:

Livemooreco.com – https://www.livemooreco.com/

Matt’s Faces of Blue article – https://coloncancercoalition.org/2017/10/11/faces-blue-matt-moore/

 

 

 

Matt Talks about Live Moore in this video:

Talking Colon Cancer Screening and Awareness With Dr. Andrew Albert


In this bonus episode Dr. Andrew Albert returns to the show for an informal conversation about colon cancer screening and awareness. He and I talked about embarrassment, stigmas, poop and more. How do we get young people, and their doctors, to recognize their symptoms and understand that there’s no such thing as “too young” for colon cancer? How do we get people in their 40’s to ask their doctor when should they schedule their routine colonoscopy?

If you’d like to share your ideas on how to increase screening rates in those over the age of 50 – 45 in the African American community – and how to raise awareness of symptoms in the college-age community please email Lee at Lee@thecoloncancerpodcast.com

 

 

Getting Men To Discuss Their Colon Cancer Symptoms, With Paul Shadle

Paul Shadle

Getting Men To Discuss Their Colon Cancer Symptoms, With Paul Shadle

Paul Shadle was diagnosed with stage IV colorectal cancer in 2016 after noticing symptoms on a family vacation. He had dismissed prior feelings of fatigue and chalked it up to getting older. On vacation, he had bloating and cramping in his abdomen, later noticing blood in his stool.

When Paul was diagnosed, the disease had spread to spots on his liver and lungs. Since then, he’s undergone regular sessions of chemotherapy. The spots on his liver have gone away, and the spots on his lungs have shrunk considerably. He’ll continue with the chemo treatments until doctors expect to remove the main tumor.

Paul stumbled upon Fight Colorectal Cancer’s ambassador program shortly after his diagnosis. Last summer, he applied and was selected to participate in the national campaign in New York City.

The campaign encourages individuals to get checked and learn more about the disease.

 

Paul and I discussed the fact that many men are reticent to share information about their health, particularly potential symptoms of colorectal cancer.

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

Leading Grass Roots Advocacy While Dealing With Her Stage IV Diagnosis

Leading Grass Roots Advocacy While Dealing With Her Stage IV Diagnosis

Julienne Edwards was finishing law school, dreaming of her new career. God, as they say, had other plans and at the agee of 26 she was diagnosed with stage IV colon cancer.

Julienne is the Grass Roots Advocacy Manager for Fight CRC.

Links Mentioned In The Show

Fight CRC Clinical Trial Finder

@Jules_GEdwards on Twitter

Fight CRC Advocates Facebook Group

Our Seventeen Years With Colon Cancer and Each Other

Danielle Burgess, Mike Burgess

Our Seventeen Years With Colon Cancer and Each Other

Danielle and Mike met when they were teenagers. “We were best friends” they told me. When she was just 17, Danielle was diagnosed with Stage III colon cancer. Nine years later she again would be diagnosed with colon cancer; this time it was Stage 1.

Initial genetic testing was inconclusive. Later on she would learn she had Lynch Syndrome. On January 23rd, 2018 Danielle and Mike commemorated her 17th “cancerversary.”

Danielle currently serves as the Director of Communications for Fight CRC.

During our conversation, Danielle and Mike discussed their relationship and the joys and challenges they’ve experienced. Mike talked about being a caregiver.

During the show intro. I mentioned the upcoming Undy Run/Walk taking place in Tampa, FL. If you’d like to join my team or make a donation to my team click here.

I will be attending Podfest from February 8-10; one of the largest podcasting conferences in the world. At last year’s conference I met Bruce Langford and Chel Hamilton who I interviewed on the podcast. Bruce is the host of the Mindfulness Mode podcast. He came on The Colon Cancer Podcast to talk about how Mindfulness can help ease the stress and anxiety of cancer. Chel Hamilton is the host of the Meditation Minis Podcast. She and I discussed techniques to help alleviate scanxiety.

 

Links

Fight CRC 

Lynch Syndrome

Danielle’s Blog

Danielle on Twitter

The Colon Cancer Podcast interview with Bruce Langford discussing Mindfulness

The Colon Cancer Podcast interview with Chel Hamilton discussing scanxiety

Her Attitude and Spiritualness Helped Get Her Through Rectal Cancer

Kari Amarosso

My Attitude and Spiritualness Helped Get Me Through Rectal Cancer

Happy New Year! There is much to look forward to in 2018. In March, I celebrate my 7th “cancerversary.” This is probably why, being Stage IV, my oncologist called me an “outlier.” I’ll take that! Next month The Colon Cancer Podcast will celebrate its 3rd anniversary. Also, on February 8th – 10th I will be attending Podfest; one of the largest Podcasting Conferences in the world.

In March I will attend my first Call-on Congress with the wonderful folks from Fight CRC. In April, The Colon Cancer Challenge, along with Northwell Health, will host the Early Age Onset-Colorectal Cancer (EAO-CRC) Summit in New York City.

During this episode I interviewed Kari Amarosso. In 2009 she was diagnosed with Rectal Cancer. In May, Kari will celebrate her 9-year “cancerversary.” During our conversation, Kari talked about how her positive attitude and spiritualness helped her cope with her disease.

Her Colorectal Cancer Symptoms Were Dismissed and She’s Happy To Be Alive

Sasha DeNisova

I learned of Sasha’s story through a Faces of Blue profile from The Colon Cancer Coalition. Here’s the article:

18 months, 78 weeks, 546 days, 13104 hours, 786240 minutes. I heard him, but I didn’t really hear him. I stared into his face trying to keep composure. Eighteen months with a good quality of life was all the doctor was offering me.  I went to speak, and my voice cracked. Tears poured down my cheeks.  Eighteen months was better than the status quo, but was it really enough time? His look was that of understanding, “A good quality of life for someone so young is very important,” he proceeded.  What was quality of life? The life I had before I was sick? The one with no physical limitations? 

“Young people have a really hard time coping with colostomy. Acceptance typically comes with age,” the doctor stared me down as tears rolled down my cheeks. Hard time doesn’t even describe it.  The first couple weeks I didn’t know how I was going to make it to the next day, let alone a week, a month, a year.  Was it really better now?  I was coping better, that’s for sure. “Given your diagnosis, the immediate goal is to give you quality of life with what little time you do have.” The lump in my throat was refusing to go away.  I had so much to say, yet nothing came out.  Time suddenly became the most important thing in the world.  Time wasn’t something I had.

As if the news of my short life wasn’t devastating enough, the doctor proceeded to ramble on monotonously “The surgeon found cancer cells on your uterine wall. I want you to prepare yourself that a full hysterectomy is a real possibility.” Here I was, worried about trying to preserve my eggs during chemotherapy, while the doctor talked about taking away the possibility of having children forever as if we were reviewing menu options for Sunday brunch. Until the cancer diagnosis, I didn’t really that think that I even wanted children. Focused on my career, I’ve always thought I’d have more time to make the decision that was right for me.  The loss was so real and profound.  I felt as though I was being robbed of something from the inside out.  My aunt looked over encouragingly, “It’s not like you need those parts anyway.” Excuse me? I don’t need those parts? I was screaming inside my head. What about a possibility of having my own family? One day reading a bedtime story to my son or daughter? I was getting ahead of myself.  Who was I kidding?  Eighteen months.  That was all that was on the table.

“I want you to understand that surgery might not be successful,” the doctor continued.  This wasn’t a shock.  The latest study on HIPEC (hyperthermic intraperitoneal chemotherapy) conducted in conjunction with researchers at the University at Buffalo, University of Michigan, Mount Sinai Hospital, and the University of Toronto showed the mortality rate between 8-11% with perioperative complication rate of 27–56%.  Furthermore, the 5 year overall survival rate for colorectal adenocarcinoma was just 38.2%.  One of three makes it, plain and simple. I realized in that moment how much I wanted to live.  The surgery was a chance, a chance to have a normal life. Reconnection at the time of HIPEC meant getting rid of the dreadful bag forever.  A glimmer of a normal life was worth the risk any day of the week. I so desperately wanted some semblance of my old life back, the one without pain, constant worry, nausea, and the bag. I wanted my old wardrobe back. I wanted to go swimming. I wanted to run the Tough Mudder, the Spartan, or even the Warrior Dash. I wanted the old me back, the one who wasn’t dying.

I couldn’t help but wonder what my life would have been like if the doctors would have caught this disease on time? With no family history of cancer, I was not a candidate for a colonoscopy until the age of 50.  My last physical, I passed with flying colors. My family physician went as far as to deem me the healthiest one of his patients. Little did he know of a tumor that had setup shop in my colon and was growing every day.  The what ifs, and the could have beens plague my mind every day.

I took a deep breath and tried to think back on my life.  It has been a good one! Surrounded by friends and family, armed with a great career, I was on top of the world up until that fateful day of April 11, 2017. It was a day like any other.  Having caught a bad case of E.coli in France two weeks prior I was still recovering.  I was not 100% and have not felt like myself since returning stateside.  That morning, I woke up to find a lot of blood in my stool and immediately called my family doctor.  His nurse advised to go to urgent care.  I knew blood could mean cancer, IBD, Crohn’s or any number of other maladies, none of them good.  Numerous blood tests to check for infection and parasites came back with nothing.  The urgent care doctor collected a stool sample and promptly referred me to a gastroenterologist the following morning.

The gastroenterologist was the crude sort who looked me up and down, saw a pale girl with tattoos and losing weight, and assumed that it had to be drugs. It never occurred to him that I, a successful professional, was truly sick. My tests were squeaky clean: no parasites, no Campylobacter, no Salmonella, no Shigella, no Vibrio, no Yersinia, no Shiga Toxin, no Norovirus, or Rotavirus. He scratched his head, gave me a quizzical look, gazed deeply into my eyes and told me: “You have all the symptoms of a chronic pot smoker, just admit that you are on drugs.”  I haven’t smoked pot a day in my life and did not condone drug use on any level.  His statement was offensive.  Furthermore, I was pretty sure I actually knew chronic pot smokers, and none of them exhibited my symptoms. He proceeded to tell me that a liquid diet will cure me and sent me home to wait for a sigmoidoscopy the following Friday.

The pains started sharp and debilitating. It felt as though someone was stabbing me in the stomach repeatedly.  The sigmoidoscopy showed nothing.  The gastroenterologist informed me that results of the biopsy will be mailed to me in about a week’s time or so and to keep not eating.  Outside of my blatant “drug use” there was nothing wrong me. When I protested informing the doctor that by the end of the following week would be almost two weeks since I’ve eaten, he laughed and told me: “If I could go three weeks without eating in college on a bet, you can last two weeks.”

By Monday, I was in so much pain I was not able to function. I haven’t slept since the previous Friday and found solace in calling the nurses’ line repeatedly to see if the results of the biopsy were in. By mid-day Tuesday a very annoyed nurse told me that there was absolutely nothing wrong with me and to please stop calling. The gastroenterologist was kind enough to refer me to a colorectal surgeon to appease me but the first appointment wasn’t for another week and a half.  I didn’t know what to do.  Every minute I was getting worse and could no longer make it up and down the stairs of my house relying on my neighbor to let my dog out.

 

To my relief, the voice on the phone informed me that the surgeon could see me first thing Friday morning. The doctor’s face was cold and grim, “You are obviously very sick.  What I don’t understand is how you ended up in my office with no diagnosis.” For the next fifteen minutes he went over the possibilities of what could be wrong with me (none of them cancer) and promptly sent me in for a CT scan.  Not even twenty minutes after leaving the hospital, a worried voice on the other line advised me to return to the hospital since I needed to be admitted immediately.  I was informed that a large abscess about an inch higher than the reach of the sigmoidoscopy was found, and the doctors needed to insert a drainage tube. Diagnosis: infection brought on by E.coli due to diverticulitis. I was pretty sure that only the elderly actually got the disease, but who was I to argue?  Four days in the hospital later, I was released with a drainage tube which came out just two short weeks later.

Unfortunately, I was worse.  The pain was back and excruciating. I had mucosal discharge from the hole left by the drainage tube, and the stabbing pain in my abdomen was worse than ever.  I called the doctor who informed me that discomfort and discharge was normal, and that I should wait for my follow-up appointment. By the weekend I was so sick that I could not get up.  I called my parents for a lift to the ER since there was no way I could wait until Tuesday (my follow-up appointment).  The CT scan revealed the abscess was worse with a breach in the colon wall meaning stool was circulating through my system. Admitted once more, I was pumped full of antibiotics and pain killers. Nothing was working, I was getting worse by the hour. Almost a week later, the infectious disease doctor insisted that I needed surgery, and that we weren’t dealing with a simple infection. No one listened since my surgeon was out of town at a conference and his partner refused to perform the surgery.  He would later tell me that he wasn’t confident that I was going to pull through if he were to operate. It would be over a week until my surgery.  Days were filled with enemas that resulted in complete blockage and stool pouring out of the now gaping hole in the middle of my butt cheek left by the drainage tube.

I was groggy from the surgery. My body hurt everywhere. The overly chipper resident strolled into the room giving me the biggest smile, “High Five!” He reached out his hand. “Someone is still with us! No one thought you were going to pull through last night.” I didn’t know whether to laugh or be angry. I died on that operating table, and by the sheer grace of God and the skilled hands of the surgeons I was still here.  My colon burst as they were prepping me for the surgery flooding my system and my bloodstream with stool and infection.  I went septic, then critical, then flat lined, as my surgeon was removing tumors, affected organs, and attempting to suck out the toxins killing me.  Against all odds, I pulled through. Not even the doctors expected me to make it.

I looked around the room and saw my dad curled up and sleeping in a chair in the corner. Then, I looked down at my stomach, it was red and swollen sporting a colostomy bag on the left hand side, a zipper of staples going from my groin to my bellybutton, and a drain full of bloody mucus. I took a deep breath.  I was grateful to be alive.  It wasn’t my time to go.  The surgery took twenty one cm of my colon, my appendix, part of my rectum, the tumor that burst (the abscess turned out to be a burst tumor), and another measuring 6.5 x 6 x 2.5 cm.

The pathology report came back exactly a week after my surgery. My surgeon woke me up at 11 p.m. and told me that the tumors were cancerous, and he was not sure that he got all the cancer. The tumor breached my colon and there was lymph node involvement. He face showed genuine concern.  He looked at me with fatherly care and told me that it wasn’t fair for someone so young to be so sick.  He was sending me to an oncologist at the University of Minnesota who specializes in HIPEC to give me a fighting chance since there was nothing more he could do for me.

I met with the hospital oncologist the day before being released from the hospital. I spent the last nine agonizing days waiting for my insides to start functioning and getting used to the new normal. A young woman, like myself, the oncologist looked at me with her big eyes full of pity.  She informed me that I had stage IIIb adenocarcinoma of the sigmoid colon meaning that the cancer has breached my colon, one lymph node was affected. She advised me that chemo was very effective at this stage, and that her recommendation was to start as soon as possible, four weeks post-surgery.  I wasn’t a candidate for radiation (a radiation specialist would later confirm this fact) due to location of the tumor. There was a good chance that radiation would liquefy my bladder, causing more harm than good.  The young doctor wanted me to know that there was a chance that chemo would leave me sterile (with radiation there is no chance of not becoming sterile, but with chemo there is a chance that your reproductive organs will still function post treatment).  She recommended Depo-Provera since it puts your reproductive organs into a state of sleep as the best chance to attempt to fight becoming sterile.  Furthermore, she referred me to a fertility clinic.

I called the fertility clinic the moment I was released from the hospital, hoping for medication to offset the effects of chemo, or at least an in person consultation. The woman on the phone informed me that my only option was freezing my eggs.  The cost was $10,000.  No consultation prior to the procedure was available and you needed to prepay to be seen. I would need to start the process on Friday that week because the procedure would not be possible once chemo started. I inquired if there were financing options, payments plan, anything that would enable me to pay the amount over a period of time. Unless I wanted to access my 401K plan taking the tax penalty, I didn’t have $10,000 laying around anywhere nor did I have enough if I emptied both my savings and my checking accounts. To my chagrin, no financing options were available. Furthermore, no help of any kind was available anywhere. The woman was sorry that I had cancer, but informed me that typically people save for years for the procedure and inquired on why I haven’t done the same. I wanted to scream!  I didn’t chose to get sick, and that it wasn’t fair that the choice to have children was being stolen from me by the disease. I would have gladly put the money aside if I had a magic 8-ball that could have shown me the future. I hung up the phone. I had 2 days to come up with $6400 (cost of walking through the door, the other $3600 was due at the end of two week period).  My financial advisor informed me that I would need at least 3 days to receive funds from my 401K plan. Furthermore, the 40% viability rate of frozen eggs didn’t inspire any confidence especially given the fact that percentage plummeted once you introduced fertilization. In the end, I chose to give up.  $10,000 wasn’t magically going to show up in mere 48 hours no matter how I looked at it.  Devastated, I decided to take my chances with Depo-Provera.  What choice did I have? At the end of the day, I had to admit to myself that I needed every penny I had as I stared down the pile of medical bills with more to come as I continue my fight. How many young women were in the same situation?  How many sat there and cried as their chance to have children was being stolen from them?

This is not the end of my story, but just the beginning. Tomorrow is a newer brighter day as the medical community continues to make daily advances. My time isn’t up just yet. I’m going to fight for another day, even if it is for 19 months, 82 weeks, 576 days, 13824 hours, or 929440 minutes because it is my time and I will not waste any more of it on being sick.  I will run my Tough Mudder, purchase my dream home, and just live.  Today, I refuse to let cancer define me and will continue to fight for others like me to get screened so they never are faced with their own eighteen months.

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