A Way Back to Health: 12 Lessons from a Cancer Survivor

Introduction

Iwas the healthiest person I knew until I became a cancer patient. As a child, my grandmother and mother prepared meals at home. We rarely ate out, in part because of expense, but mostly because my family liked to cook in the Italian tradition of food equating to love. The food was delicious and nutritious—handmade pastas and soups—made from fresh ingredients from my Pap’s garden. I have continued many of these traditions throughout my adult life: buying fresh, local produce for my family, cooking most meals at home, avoiding fast food, taking nutritional supplements, and eating as healthy as possible.

My dad was an athlete in his younger years—fast enough to go to state competitions in track. I followed in his athletic footsteps, starting my athletic career as an eight-year-old gymnast. Gymnastics and then track filled my elementary and high school years, and I earned eight letters for sports. By the time I went to college, running, lifting weights, and coaching gymnastics were routine parts of my life. As an adult, aerobics, weightlifting, skiing, golfing, yoga, meditation, and a generally active life were my norms. Even while working in an office setting for several decades, I always belonged to a gym and attended classes regularly. For God’s sake, my triceps weren’t even super jiggly!

Doctor’s visits were rare occurrences, except for an occasional flu, yearly checkups, and pregnancy-related checkups. Even when I was pregnant, my health remained fully intact. While three months pregnant with my son, our first child, I climbed the Great Wall of China. The day before my son was born, I worked out on our at-home stair climber hours before going into the hospital to give birth. I gained twenty-five pounds with my first pregnancy and thirty with my second and lost all the baby weight within six months of delivery.

That’s why when I went in for my first routine colonoscopy, I was anxious (who isn’t when someone is about to stick a camera up your butt?) but not expecting anything out of the ordinary. No symptoms, no sickness, a lifelong healthy lifestyle. What could possibly go wrong?

I was the healthiest person I knew until the day of my colonoscopy.

I had no idea colorectal cancer was incredibly common. When I asked my doctor how, given my lifestyle, eating, and exercise routines, I could have colon cancer, he said that my only risk factor was how common colon cancer now is.

According to the American Institute for Cancer Research, colorectal cancer is the third most common cancer worldwide, the third most common among men, and the second most common among women. Who knew? There were over 1.8 million new cases in 2018. And the problem is getting worse. The global burden of colorectal cancer is expected to increase by 60 percent to more than 2.2 million new cases and 1.1 million deaths by 2030.¹ Unfortunately, chances are pretty good that you or someone you love will encounter colorectal cancer.

For many years, fifty was the recommended age for a first colonoscopy screening. However, in 2018, the year I was diagnosed, the American Cancer Society released updated guidelines for colorectal cancer screening. Among the major guideline changes, the new recommendations say screening should begin at age forty-five, for people at average risk. The ACS lowered the age to start screening after analyzing data from a major study. The numbers showed that new cases of colorectal cancer are occurring at an increasing rate among younger adults. After reviewing this data, experts on the ACS Guideline Development Committee concluded that a beginning screening age of forty-five will result in more lives saved.³ In October 2020, the United States Preventive Services Task Force (USPSTF) announced plans to lower the recommended colorectal cancer screening age to forty-five for individuals of average risk, which will certainly save lives.

Being familiar with the statistics and the updated guidelines provides strong rationale to encourage screenings. In my experience, however, there is nothing like a personal story to provide real motivation, which I learned in a powerful way when I first shared my story.

On June 5, 2018, a week after my colectomy surgery, I was recovering at home. The diagnosis had been life changing, and I felt the need to let my friends and business network know what had happened. Through an article on Medium (which can be found in its entirety in the Appendix of this book) and a Facebook post, I shared the story of my situation, diagnosis, and surgery. At that point I did not yet know that chemotherapy treatment would soon be in my future.

As a result of sharing my story, I was soon inundated with not only well wishes but also reactions like I’ve been meaning to schedule my colonoscopy screening and now I’m doing it, and Your story has incentivized me to get my [husband/mother/father] scheduled for their next screening. Dozens and dozens of people responded and were taking action, not because of the new guidelines (which had just been released and in the news that week), but because of a personal story.

Despite how much the story seemed to help others, I went into stealth mode during the next treatment phase of chemotherapy. While I felt the need to publicly share the first part of my story, I felt an even stronger need to keep the rest of the story secret, until now.

Cancer is ugly. It sounds cliché until you go through it, but it is really ugly. Physically, every system in my body was affected. The treatments are toxic. The side effects are sickening and relentless. I couldn’t eat, sleep, digest, poop, or live normally. The doctors’ appointments are time-consuming, and the healthcare system is maddening to navigate. The anxiety and mental anguish infiltrate daily life and impact everyone in the family. While I was a regular at the chemo infusion center, losing weight rapidly and suffering toxic side effects, I didn’t want cancer to take over my life. So only my family and very closest friends knew what I was enduring.

I still wrestle with sharing my story because I don’t want the pain of reliving even a second of the ugliness. But what I have found is that there is pain in not sharing a part of my life that has forever changed who I am. A relentless researcher and avid reader, I’ve also learned so many lessons that could be helpful to others that I feel compelled to share.

After undergoing the full process, from diagnosis to surgery to chemo and back to health, I learned a great deal along the way. I witnessed other patients and their families struggling with challenges like I had experienced. They are lessons I never wanted or expected to learn, but they helped me and, based on the power of personal stories, could help others who are coping with a similar situation.

Being a professional marketer and storyteller by trade and having previously published a business marketing book, the idea of writing a book about my cancer experience was almost second nature, though the idea of reliving the stories was scary. Sometimes writing the story was too painful and I had to walk away. Other times, the feeling of survival and a drive to share what could be helpful to others would win. In the end, what I learned was too compelling for me to keep to myself because I didn’t know then what I do now and too many people are in the same situation.

This book contains lessons in key areas that capture and detail the learning. Each lesson represents an area of unexpected learning for me and contains background, statistics, and my personal perspectives, as well as those of other cancer survivors. Through the power of personal stories, the lessons are meant to help people advocate for themselves or a family member as they wrestle with cancer and its treatment.

You’ll see that I tell my personal story in chapter one so that as we move through the lessons you’ll have a frame of reference. Parts of my personal story are also embedded in each chapter. The stories share my feelings and emotions about what I was experiencing at the time. These experiences led to the discovery of my unexpected lessons.

In talking with other survivors, I found that many share similar sentiments. To explore an even wider range of experiences, my editor suggested that I incorporate lessons from other cancer survivors. My call for survivor stories on Facebook and LinkedIn received an amazing response. Fellow warriors shared moving and powerful stories with me and granted me permission to share them in this book.

While reading the stories shared with me, I felt like my immense pain and suffering paled in comparison to what so many others and their families, especially children, have endured.

There is such a quiet strength among these survivors. Like me, many people choose to not share their journey publicly and suffer privately. Given the ubiquity of cancer in general, someone you know is likely suffering right now, and there is always someone who is having a worse day than you.

I approached the lesson chapters mostly from a chronological-progression perspective. However, after reading the first foundational chapter, the lesson chapters can be read in any order that is most meaningful or useful to the reader. You’ll find my personal experiences and advice coupled with the stories of others, as well as some facts and data embedded into each lesson chapter.

I am still not sure why God chose this path for me. While I figure that out, perhaps my journey can serve as a guide to ease the suffering for others through self-advocacy and, perhaps, as a catalyst for much-needed changes in our healthcare system.

I remain positive that everything will be OK, and I still believe that I am the healthiest person I know. With so many blessings and so many lessons learned, some of which I’ll share with you in the next chapters of this book, my hope is that someone can take away some learning that can help them or a loved one should cancer strike. I also hope that medical professionals—especially oncology doctors and nurses—can see from this first-person account how they impact patients’ lives.

Please let me know your thoughts and experiences as we work together to share personal stories that will help others to combat cancer and survive cancer treatment.

Contact me at www.awaybacktohealth.com.

CHAPTER 1:

My Story

There is no greater agony than bearing

an untold story inside you.

—MAYA ANGELOU

When I awoke in the dark at 5:30 a.m. that Friday in late April, it was predicted to be a beautiful spring morning. Just another day . My stomach was growling a bit from the colonoscopy prep—no food and almost twelve hours of cleansing—and no food or drink allowed that morning. The prep is the worst part, they all say. Despite the prep, I was determined that I could make it a few more hours when I’d come home after a clean bill of health, eat a hearty breakfast, and enjoy an early start to a nice weekend.

My husband drove me the short ten minutes to the outpatient surgical center where the colonoscopy procedure would be done. My mom, a retired nurse, would meet us there. Never a fan of medical procedures, I was quiet and a bit tense on the ride, but my husband’s chatter and pleasant demeanor kept things light.

Going into the procedure I had done my homework, wanting to know what my body would go through. I talked in advance to the anesthesiologist to ensure that I would not be given any opioids, not wanting to have any addictive drugs in my system. Not one to take medication, I didn’t like the idea of anesthesia. But clearly, this is a necessary evil when a scope is to be inserted in your ass-end and up into your colon.

Pulling into the parking lot at the surgical center, I was happy to see only a few cars. I had purposely scheduled the first appointment so I could be in and out quickly. Check-in was routine with a short wait in the reception area and then back to the changing/pre-procedure holding area. The nurses who greeted me were pleasant and made me feel comfortable.

After answering the long series of questions about my health—do I smoke, no; drink, no; take any medications, no; have any symptoms of any kind, no; and on and on and on, always no—the nurse commented that my remarkably healthy lifestyle was rare and my procedure would be over before I knew it. Soon after changing into the procedure gown and lying down on the hospital bed, the IV line was inserted into the top of my hand for the anesthesia. As soon as the anesthesia started, I dozed off within seconds.

It felt like only a few minutes had passed when I heard my name being called. Still in a fog, I felt a twinge of pain, like a