Welcome to Zebra Tales! We are so happy and excited to have you on board!

We understand that living with Carcinoid Neuroendocrine Tumors (NETs) or Carcinoid Syndrome is not easy and we hope you will be encouraged and inspired by Zebra Tales. These are real stories about real life experiences by people who may be just like you.

Over the coming months you will find a selection of stories from inspired writers who are motivated and encouraged in letting you know that you are not alone on this journey. Do you want to take part and share your own Zebra Tale? Please email ram@selfcarecatalysts.com.

Disclaimer

All the information and material provided via the Health Storylines Platform, including content, survey questions, images and SCC policies, are for informational purposes only and are not intended to serve as, do not constitute and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health and/or your particular situation. Never disregard professional medical advice or delay seeking advice because of something you have read on or learned via this Health Storylines Platform. 

LIVESTRONG

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By Dennis Shuman

Hi, I'm Dennis Shuman and I'm a cancer survivor, diagnosed with a rare incurable but treatable cancer called carcinoid. I am an eight-year survivor of this disease which has taken most of my small intestines. Although I have had surgeries that took months for me to bounce back from, I have determination, will, and the grace from God to maintain my health. With a lot of cancers, not just mine, you can suffer many side effects including a lack of strength, weight loss, diet, and fatigue. Even your mindset can be tested by cancer.

After my diagnosis, I got a phone call from the local YMCA in my area, inviting me to be a part of the LIVESTRONG program. At the time I was suffering from heavy fatigue, having difficulty with weakness, and taking naps every day. The YMCA worked with me twice a week to develop a workout plan to fit my abilities and to eventually improve my health. Within a few weeks I started feeling better, my fatigue improved, I was getting stronger, and my appetite increased. It's not just fitness, they teach other classes too such as diet and even yoga. I have new friends and many others from the YMCA who truly care for me and my health. I know that whatever struggles I endure I have a foundation of people who support me in my journey.

The LIVESTRONG Foundation provides free cancer support services to help people with the financial, emotional, and practical challenges that accompany the disease. Created in 1997 by cancer survivor and philanthropist Lance Armstrong, the Foundation is known for its powerful brand-LIVESTRONG-and for its advocacy on behalf of survivors and their families. I just want to say thank you to the YMCA and the LIVESTRONG Foundation. My journey with cancer is long from over, but I know at least I have tools to Fight the Fight and I am not alone. So when you hear hoof beats don't just think horses - think Zebras.


How to be happy despite living with cancer

By Jayne Beck

I am very lucky. My husband is the best caregiver. He is there for every appointment. Plus, he makes me a latte every morning and Häagen-Daz ice cream every night.

The key to happiness when you have cancer is to live like you don't have it. No one knows when their time will be up. Crying about your misfortune just makes you lose the time you do have. Sure, there are days you don't feel great, but the important thing is to enjoy the things you can. While you may need to make allowances for fatigue, make plans, go to the theater, the opera, the zoo (of course when the temperature is above freezing), eat out, and most important eat plenty of ice cream!

My husband and I eat out almost every day. Last winter I bought tickets for the Columbus Symphony, tickets for the opera and the Broadway show series. We just returned from a vacation in Europe. When my husband expressed concern about the cost, I told him: I have cancer and he is old - what are we waiting for? Next year we hope to go to Paris. Not everyone can afford to be so lavish, but most people do have places to enjoy that are within their means, even if it's just a weekend getaway.

I am very lucky. My husband is the best caregiver. He is there for every appointment. Plus, he makes me a latte every morning and Häagen-Daz ice cream every night.

We focus on having fun. When we go to the oncologist, my husband is the entertainment in the waiting room. It is amazing how a little humor can brighten the atmosphere among people dealing with all kinds of cancer.

Another thing is to pay attention to your doctor. If something does not sound right, question it. Doctors are not gods, and carcinoid patients have often been initially misdiagnosed. It is also a good idea to have two doctors that you trust. I have been lucky to have two very good oncologists. One basically takes care of my routine checkups and shots, and the other is with a noted cancer hospital in Columbus, Ohio, where they get involved with trials, both for procedures and new drugs. They have a team that specializes in carcinoid and other neuroendocrine cancers. I have been fortunate to be a patient there. Living only 20 minutes from a hospital that specializes in your disease is a major advantage.

Most of all, think positive. I was diagnosed 19 years ago. Initially I was depressed. I had a seven year old son and thought I might not get to see him grow up. He is 26 now and I am still here. I decided I was going to live to be 89 and I told my husband I expected him to care of me all of my life. He quipped that he would be 101 then.

Best of health and happiness and hope for an effective treatment!


A Look Back in Time

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By Tana Gotcher

I do have a lot of ups and downs. So I CHERISH my up days and get everything done that I can.

As I reflect on my journey with carcinoid I begin with 1984 when I started having a lot of stomach problems, which led to exploratory surgery and the removal of my gallbladder. For a year or so things did get better. Jumping ahead to 1999 I began having symptoms which I now realize signaled my later diagnosis of carcinoid - flushing, sweating, diarrhea, and nausea with bad pains in my right upper abdomen. Like so many other carcinoid patients, I saw all kinds of doctors before my diagnosis, with one even telling me maybe I needed a psychiatrist. It wasn't until 2001, when my cardiologist ordered a 24-hour urine test that came back high, that I first heard the word carcinoid.

In 2005, the doctors in Texas did a type of exploratory surgery making two incisions in my abdomen, one above the liver and one in the appendix area, and were supposed to get samples and clean out any tumors they could remove. After a 5-hour surgery and hours in recovery, I woke up to find out the surgeon had closed both incisions without doing one thing. He took no samples for biopsies and basically the surgery was a waste of time. He said it was such a big mess he didn't know what to do and since they were having trouble with my blood pressure bottoming out, he closed. This took a very big toll on me both physically and mentally. At this point I thought I had reached the end.

Now to the year 2007 and I thank God I am still here to see all the events. My granddaughter turned 8 and my grandson 5. Me, I turned the ripe age of 50 and you know I am proud of the age. Truthfully, I did not think I would be here to celebrate my 50th. I have not been able to travel to one of the carcinoid specialists but I have talked to a couple of really nice doctors that have helped me -- one in New Orleans and one at Mayo in Minnesota. They graciously helped me with advice and even looked over test results. My very good friends Ron and Myrna have helped my husband, Charles, and me with support and news of carcinoid. I have other friends through the carcinoid support group in Texas and the online support group ACOR that have helped me along the way, and I thank God for them all.

I found a new oncologist who put me on monthly injections and that made me feel a lot better. The doctor follows me regularly and recently told me I could now travel to Mayo or wherever I choose to go to see a specialist.

2018 marks 17 years since my carcinoid diagnosis and 18 years since my open-heart surgery. I thank God for every year, actually every single day I have. Another day to love my husband and another day to see my son, Ryan, grow into a man and a father. Another day to be with my grandkids.

I do have a lot of ups and downs. So I CHERISH my up days and get everything done that I can. I save my strength to go to a show with my grandkids or have them spend the day with me. This is so much better than where I was earlier that I do THANK GOD for every single day I have. Each day gets me closer to maybe a new treatment or maybe even the strength to one day go have that surgery. So some of my story may sound bleak but it is not, I am blessed and I know God carries me when I am weak and rejoices when I am strong.


A Crazy Ride to Recovery

By Judy Wilkinson

Nothing in my life has been the same since being diagnosed with neuroendocrine tumours of the small intestine - little did I know this would be the case when surgery was suggested to remove them. I hoped the symptoms would disappear post-surgery and I thought I'd be cured, but my tumours had other ideas and they metastasised into my lymph nodes. While the tumour grading sounded good: "well-differentiated, Grade 1," staging under World Health Organization guidelines sounded bad: "Stage 3b" (scary).

Despite all this, I still wasn't considered a candidate for "active" treatment and I was put on the "wait-and-see" program. That option was excruciating for me and I needed to do something to occupy my time. I felt I couldn't just sit around for five years having my blood and urine tested every three or six months - I needed to introduce something more positive into my life.

Having a rare cancer is a lonely and even isolating experience. You're always looking over your shoulder, hoping it doesn't come back. So as soon as I could, I started my journey back to fitness: physically, mentally, emotionally and spiritually.

This journey hasn't been an easy one, as I was cut down the middle, from just under the breastbone to just above the pubic bone. It was difficult for me to start any fitness regime, due to my extensive surgery. I required initial rest and nurturing to get my diet and fatigue under control and that's where documenting my symptoms daily using the Carcinoid NETs Health Storylines app has been comforting. My favourite feature remains Healthy Doses for mind and spirit. I particularly love the mindfulness, gratitude and optimism sayings.

The app also inspired me to get moving. So within three months, I decided the time was right to get on my fitness way and, despite still struggling physically, I was determined not to give up! With a Fitbit (Christmas present) now on my wrist, it took less than six months to go from walking fewer than 2,000 steps to almost 10,000 steps a day.

I've gone from strength to strength, doing daily resistance band exercises, squats, leg presses, even wall push-ups. But that wasn't enough, I wanted to set a new goal and that involved joining a gym or, in my case, attending the hospital's physical conditioning class so I could get on a bike. I was so scared of falling off the bike, but by month 10, I achieved that goal and am now eyeing the step master machine.

Combining the app and doing all these exercises as well as attending meditation classes run by the hospital has helped me mentally and emotionally, not to mention spiritually. It has given me the strength to face every day in a positive way.

Join Judy on her Ride to Recovery via her Roaming Rave blog @ 
https://roamingrave.wordpress.com/


Learning to Live: The Balancing Act

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By Felicia Temple

On a Tuesday night after working a 16 hour shift, I walked into the Emergency Department with complaints of unbearable epigastric pain and vomiting that had lasted for 3 days. I had no idea that my life would never be the same. They did routine blood and urine, and after everything came up normal, they pegged it all on gastritis and were content with sending me home. Being a nurse, I knew something was wrong and asked would they do me a favor and do a CT scan just in case. Thank goodness the Physician's Assistant said yes. To everyone's surprise, it showed I had an early appendicitis, and hours later I had my appendix removed. I left the hospital the next day and was feeling great.

A few days later, I got a phone call from the surgeon himself, telling me that I did not have an appendicitis, but that I had a carcinoid tumor in my appendix and that I would need to have the right side of my colon removed. I was terrified and upset, as I felt he should have called me into the office to give that kind of news. After I settled with the news, I was scheduled for a multitude of tests and specialized scans, then scheduled for surgery. I had my right hemicolectomy done in August 2015. At this point, I had seen 2 surgeons and no one suggested seeing an oncologist, stating that there was no need because there was no treatment other than surgery.

At the urging of my mom, I scheduled an appointment with a physician who does research about carcinoid tumors and found out to my surprise that there was treatment. I was started on oral chemotherapy as well as monthly somatostatin analog injections. After 6 rounds I was cleared to stop chemotherapy and my scans have been all clear since then. It was a super rocky road and I'm still under supervision, but I'm glad that the worst of it is behind me.


Inner Light Yoga

By Stacie Chevrier

When I walked into my first yoga class in 2007, I was confused. During 60 minutes, the teacher lead students through a long sequence of postures followed by moments of no instruction. I was uncomfortably close to my neighbors and everyone was breathing funny. I can't remember why I went back, but I did and with diligent practice I learned the physical poses. Little did I know it would become so much more than exercise.

In 2014, I was diagnosed with a metastatic pancreatic neuroendocrine tumor, the same cancer that killed Steve Jobs. Through surgeries, chemotherapy and radiation, I continue to use the valuable lessons contained in that one hour yoga class to navigate the disease.

Some instructors start class by telling students to leave their problems at the door, which I find impossible. Yoga has taught me the mental strength to sit with things that are uncomfortable. Sometimes this is a yoga pose, a 45 minute MRI, anxiety, etc.

During my early days of yoga, I often became frustrated by forgetting the long sequence, but eventually realized that was by design. I now understand the teacher's intention was to empower students to figure out what is best for them on their own. This method taught me to follow my instincts and that I don't need to follow someone else's plan because I am in charge of my body.

Another important concept this practice has gifted me is the ability to truly be present. During my practice I become so focused on breathing and the series of poses that I don't have time to think about cancer, the uncertainty of the future or the traumas of the past. I have been able to translate this while off the yoga mat. When I notice anxiety building, I stop and tell myself, "Right now, in this moment, you're okay." Because in the grandest scheme of life, the present moment is all any of us are guaranteed.

Last summer in class, I had an incredible moment of clarity in an uncomfortable core pose, when my teacher said, we hold our issues in our tissues. I realized after years of always avoiding core work, that I didn't avoid core work because I was weak, but I avoided it because that's where I hold my stress, emotion and issues. After a lifetime of avoiding this area, it's no wonder that's where disease developed.

However, the lesson that has been most valuable to me is that yoga taught me to breathe. Through a one hour class, I take approximately 600 big, intentional, long, strong, cleansing, releasing breaths. Before yoga, I'm not sure I took one deep breath a day. Through my most difficult moments, I remind myself that the only requirement is to breathe. As long as I can accept air in and out of my lungs, I am still here living.

Stacie Chevrier is a writer and freelancer living in Nashville, Tennessee with her husband where she practices yoga every day. She is grateful for the teachers at the Center for Yoga and Inner Light Yoga who have taught her to breathe through a life with chronic cancer. More of her stories about cancer and yoga can be found at https://www.staciechevrier.com.

Photo credit: Emmy Singer, Inner Light Yoga