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Choosing to Lead a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley

Choosing a Positive Life With AFAP, With Daniel Shockley

Daniel Shockley is a veteran of the U.S. Navy. At the age of 50 he was diagnosed with AFAP, Attenuated Familial Adenomatous Polyposis. AFAP is a subtype of a condition known as Familial Adenomatous Polyposis (FAP), which causes an increased number of colon polyps, and therefore, an increased risk of colon cancer in the people who have it.

Though faced with life saving and life-altering surgery, Daniel has chosen to live a positive life.

My mindset from the onset can best be described as: I tend not to think about things I am unable to control; medical issues I am unable to control. What I can control is my positive attitude – Daniel Shockley

What I Learned From Daniel Shockley

  •  Understand as much as you can about your condition

    • Understanding your condition will help you adapt and will allow you to press on with your life.

  • Worrying doesn’t help.

    • In Daniel’s words “worrying didn’t cause my condition;  therefore,worrying will not make it go away.”

Daniel has made advocacy his life’s work. Here are the organizations that Daniel is working with:

The Colon Cancer Alliance

Fight Colorectal Cancer

Hereditary Colon Cancer Foundation

National Organization of Rare Disorders

Wound, Ostomy and Continence Nurse Society

United Ostomy Associations of America, Inc.

Chris4Life

Michael’s Mission

Chris4LIfe Founder and President, Michael Sapienza

, Christine

The inspiration for Chris4Life, Christine Sapienza

Michael Sapienza founded Chris4Life in honor of his mother, Christine Sapienza, who lost her battle with colon cancer in 2009.

The mission of Chris4Life is:

To find a cure for colon cancer by funding and facilitating cutting edge research programs across the nation. To improve the lives of patients diagnosed with colon cancer by funding and developing programs to support patients and their caregivers. To increase awareness of the life-saving importance of early screening for colon cancer by using innovative strategies.

What I Learned from Michael Sapienza

  • One person can make an impact.

    • Chris4Life has grown and now sponsors major events across the country to raise money to support colon cancer research.

  • Within a few years, we will see colon cancer receive the national spotlight like other forms of cancer currently have.

Important Links Mentioned on the Show:

Colon Cancer Alliance Webinar: Dehydration: Causes, Impact On Your Treatment and What You Can Do – May, 20, 2015 7PM EST

 

UndyChicago Undy

 

 

 

 

Never too Young

The Chrs4Life Fabulous Event

 

From Homelessness to Colon Cancer Advocate, With Candace Henley

Candace Henley

From Homelessness to Colon Cancer Advocate, With Candace Henley

Candace Henley says she was “Superwoman” prior to her colon cancer diagnosis. The mother of five children, she worked out at the gym, drove a bus for the Chicago Transit Authority and was involved in her church.

When she was diagnosed with stage IIB colon cancer the effects were devastating; not just physically, but also emotionally and financially. Her husband left her, she lost her job, her car and her home. Inspired by the care and support of many, particularly her children, she fought her way back.

In an effort to raise awareness about colon cancer in the African-American community, Candace created Blue Hat BowTie Sunday. In March of 2015, she was  recognized by the Zeta Phi Beta sorority as their Woman of the Year. Candace was also one of four women whose story was profiled in Women’sHealth Magazine.

What Candace Henley Learned From Surviving Colon Cancer

  • I learned there is no room for self-pity- (“Why should I fight it, I’m going to die anyway”). Who really knows when they are going to die? Those that love you want you to fight and if they could they would fight for you but, truth is “Your survivorship should not be more important to everyone but you!”

  • I learned that you will lose friends as result of fear and ignorance about what cancer is and no matter how many times you tell them they can’t get it if they touch you.

  • I learned that I am happier than I was before cancer. When you survive cancer, you see life in HD. Things seem brighter, smell better and feel better. The things you use to take advantage of somehow become more exciting and make you want to slow down and savor moments as long as you can.

  • I learned that laughter is healing and good medicine. I remember reading that laughter had healing properties and I was desperate to feel something other than pain and anger so, I started watching America’s funniest home videos and spending more time with family and friends.

  • I learned that LIVESTRONG is not as easy as it sounds.

  • I learned that I would have missed being a grandmother.

  • I learned I would become an advocate for others like me.

  • I learned that I would encourage others not only about making it day by day but, making it through life.

  • I learned that you will not be the person you use to be and you have to find your “New Normal”.

  • I learned that God does answer prayers.

  • I learned that cancer is not a punishment from God.

  • I learned to forgive myself for being angry and forgive others who hurt or left me when I needed them most.

  • I learned that cancer is an exclusive club that does not discriminate. People you might not otherwise meet from all walks of life become lifelong friends as a result of a cancer diagnosis.

  • I learned my purpose in life.

  • I learned to live my best life now

 

Lynch Syndrome, and Genetic Testing and Counseling, With Georgia Hurst and Ellen Matloff

Georgia Hurst1

I Have Lynch Syndrome, Inc founder, Georgia Hurst

Georgia Hurst is the founder of I Have Lynch Syndrome, Inc. As stated on her website

The mission of I Have Lynch Syndrome, Inc., is to save lives through education and awareness raising about Lynch among the global medical community and the general public.

Ellen Matloff is the President and CEO of My Gene Counsel.   “My Gene Counsel will translate the jargon behind the latest breakthrough on the evening news and tell you what it really means for you and your family.”

During this podcast, Georgia and Ellen discuss the impact that Lynch syndrome can have on those affected by it and the importance of knowing your family medical history. The also educate us on the world of genetic testing and counseling.

What I Learned From Georgia Hurst and Ellen Matloff

  • Know your family medical history!

    • Speak with the older members of your family and create a family tree that lists as many family members as possible. List their age, any serious medical condition, and their age when they passed away, if applicable. Keep this document with other important documents.

  • If you have a tumor surgically removed, ask your doctor to order M.S.I. (Micro Satellite Instability) or immunohistochemistry testing on the tumor to determine if there are any genetic mutations.

  • Though not right for all cases, genetic testing should always be discussed with your oncologist. If you need assistance, or more information, visit the National Society of Genetic Counselors website, or contact My Gene Counsel.

Important Links:

IHaveLynchSyndrome.com:

IHLS

Find Georgia Hurst on Twitter: @SheWithLynch

My Gene Counsel

Find Ellen Hurst on Twitter: @MyGeneCounsel

Conquering the Psychological Effects of Colon Cancer, with Ed Yakacki III

Ed Yakacki III

Conquering the Psychological Effects of Colon Cancer, With Ed Yakacki III

Ed Yakacki III was diagnosed with colon cancer at the young age of 30. Ed faced two battles; conquering the physical effects of colon cancer, and conquering the psychological effects of colon cancer after treatment. Trying to go back to a “normal” life after treatment is a serious issue for many cancer survivors. Like many survivors, Ed struggled to find meaning to his life after completing his colon cancer treatment. Ed battled several issues including depression. Participating in the Philadelphia Undy 5K run was the impetus for his transition from survivor to “thrivor.”

What I Learned from Ed Yakacki III

  • It will take time to find your “new” normal after your colon cancer treatment is over.

    • Be gentle with yourself. You’ve been through a traumatic experience. The things that were important to you before treatment may no longer matter to you now. Your values will likely change as a result of your experience.

  • When you struggle to pick yourself up, let others lift you up.

    • Ed credits the wonderful people he met at the Philadelphia Undy, with helping him to find meaning in his post-treatment life.

  • One person can make their voice heard.

Check out Ed’s Facebook page, Fightin4Blue

Visit Ed’s Fightin4Blue website

Check out Ed’s TV appearance:

 

 

 

From Swimsuit Model to Colon Cancer Survivor and Advocate, with Grace De La Rosa

Grace De La Rosa

Grace De La Rosa – Colon Cancer Survivor and Advocate

Grace De La Rosa is a colon cancer survivor and works tirelessly advocating for colon cancer related issues. She has always made her health and well-being one of the priorities in her life. A swimwear and fitness model, and fitness competitor, exercise and healthy eating have always been a part of her lifestyle, yet at age 38, she was diagnosed with stage 3c colon cancer.

What I Learned From Grace De La Rosa

  • Know your body and don’t ignore the possible symptoms of colon cancer.
    • You know your body. When you sense something has changed and is not right, let your doctor know.
  • One person can make a difference.
  • One person can make their voice heard.
    • Grace has appeared on TV, in the newspaper and has made numerous speaking engagements, where she has shared her story. She was also instrumental in getting Florida Governor, Rick Scott, to declare Florida a “Blue State” in support of Colon Cancer Awareness Month.

Listen to Grace tell her story:

 

 

Living Life With a Hereditary Colon Cancer Syndrome, with Travis Bray, PhD.

Travis & Shawnie It Takes Guts shirts

Shawnie and Travis Bray, PhD. – Hereditary Colon Cancer Foundation

Like his grandfather and father before him, Travis Bray was born with F.A.P. – Familial Adenomatous Polyposis – “a rare, hereditary colon cancer syndrome that causes extra tissue (polyps) to form in the large intestine and in the upper part of your small intestine (duodenum).” The vast majority of people with F.A.P. will be stricken with colon cancer in their early thirties.

In July of 2012, Travis and his wife Shawnie founded the Hereditary Colon Cancer Foundation.

What I Learned From Travis H. Bray, PhD.

  • With screening and proper treatment, people diagnosed with F.A.P. can lead a normal life.

    • Being diagnosed with F.A.P. is not a death sentence.

  • Know your family health history before it becomes necessary.

    • Travis knew that both his grandfather and father had died from colon cancer and were carriers of the F.A.P. gene. He began to be screened in his early teens.

  • Live life to its fullest.

    • Travis makes it a priority to make every day a great day. He constantly evaluates his priorities, and where and how he spends his time. There’s no room in his life for negativity.

Learn more about Dr. Travis Bray and F.A.P.:

 

Learn more about The Hereditary Colon Cancer Foundation by visiting their website: HCCTakesGuts.org

“It’s Not Harder Than Cancer” – With Author, Michael Holtz

Michael Holtz

Michael Holtz – “It’s Not Harder Than Cancer”

Michael Holtz is a stage 3 colon cancer survivor and author of the new book, It’s Not Harder Than Cancer. During our conversation, Michael talks about his career with the American Cancer Society, and how his personal experience with colon cancer, compelled him to make a career change and leave the American Cancer Society. Disagreeing with those who call their own experience with cancer, “a gift” (he said it’s a gift he would like to return), he does acknowledge how his experience with the disease has resulted in new friendships, a stronger marriage and a greater focus on gratitude for even the smallest things life has given him.

What I Learned From Michael Holtz

  • You can live a normal life with a colostomy.

    • Michael recently completed a 26.2 mile marathon!

  • Surviving cancer can impact your life in a positive way.

    • Michael has experienced new friendships, new career opportunities and stronger personal relationships since conquering colon cancer.

  • Your friends & family “portrait” after cancer will not look the same as the one before your illness.

    • A common theme; some friends and family will vanish into the shadows during your illness, only to be replaced by people you weren’t expecting to be there for you.

Links for Michael Holtz:

Michael’s website: Michael Holtz Online

Buy Michael’s Book on Amazon.com: “It’s Not Harder Than Cancer”

Living Life With a Colostomy, With Tony Pace

Lving life with a colostomy - Tony PaceStage 4 Colon Cancer survivor, Tony Pace, made a life-changing and brave decision after completing a very difficult journey through his treatment.

After bladder reconstruction surgery, a partial colectomy, a partial hepatectomy, followed by chemotherapy, he made the decision to have a permanent colostomy.

During his quarterly colonoscopies, his doctor would remove between 6 – 8 polyps. This continued for over a year and a half. Tony was concerned about both the risk of a tear each time polyps were removed, and the risk that a potentially cancerous polyp may be overlooked. These were chances that Tony no longer wanted to take; hence, the decision to have a permanent colostomy.

What I Learned From Tony Pace

  • It’s your body and your life

    • Make the decisions on your medical care that are right for you.

  • You can lead an “almost” normal life with a permanent colostomy

    • Tony works in a physically demanded job. While he has had to make some minor adjustments to his daily routine, he continues to lead a very active lifestyle.

  • Attitude is everything! Tony has a terrific sense of humor and a great outlook on life.

    • My favorite quote from Tony is “Never take things too seriously and learn to laugh. You don’t have control over most things that happen to you on this journey.”

You’re Never Too Young for Colon Cancer, with Dawn Eicher

Dawn Eicher

Dawn Eicher

For years, Dawn Eicher was told by doctors, despite obvious symptoms,  that she was too young to have colon cancer. While pregnant with her 2nd child, her symptoms worsened. Her doctors told her it was pregnancy related, gave her suppositories, and sent her home. It took 10 more months before she would finally receive a colonoscopy at which time she was diagnosed with stage 4 colon cancer with metastases to her liver. Dawn was only 36 years old.

Faced with a very difficult treatment plan including multiple surgeries, chemotherapy, radiation and a temporary ileostomy, Dawn forged ahead. It has been close to a year since she completed her treatment and Dawn is NED – No Evidence of Disease. She is now fighting hard to let people know “You’re Never Too Young” for colon cancer. She has started a petition through Change.org to force insurance companies to make colon cancer screening more accessible to younger people.

What I Learned From Dawn Eicher

  • Be your own advocate!

    • Nobody knows your body better than you do. If something isn’t right, tell your doctor. If your doctor won’t listen, find one who will.

  • One person can affect change.

    • In less than 90 days, Dawn  was able to get over 70,000 signatures on her petition she’s sending to congress.

  • Attitude is everything!

    • Many people would be angry and bitter after experiencing what Dawn went through. She chooses to be positive and channel her energy for change.

 How you can help make a difference:

Sign The Petition! “You’re Never Too Young”

 

 

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