Modern Day Cancer Survivorship: Putting Humpty Dumpty Back Together Again
When we last left off, I was heading into my quarterly CT scan and meeting with my oncology team after surviving Stage IV cancer that began with the discovery of colon cancer in 2016. Like every cancer patient who has come through that struggle, we are chasing No Evidence of Disease (NED). I am grateful and happy to report that I got my first NED-confirmed CT scan in September of 2019. However, I still am looking back and trying to comprehend the emotional, physical, and mental obstacles along the way. My second confrontation with Stage IV cancer was life-shattering for me and for everyone around me. I call our challenge putting Humpty Dumpty back together.
In December of 2019, I was able to journey to Saint Lucia with my wife and daughter for a week. We called it our cancer-cation and it was a wonderful time for my family and me to sit on a beach and breathe for what felt like the first time in many years. My daughter and I summited Gros Piton together and I kept pace with the other hikers there, which was such an accomplishment. It was incredibly emotional for me to have reached the top, and I proudly wore my HB-strong shirt on the ascent and Babson College Beavers shirt on the descent. When we made it to the summit, I hugged my daughter, took a swig of beer someone gave me, and cried tears of pure joy! I was living again.
The Healing Process
The emotional healing that my family and I are going through is one of the more complex elements of this process. While my NED diagnosis is wonderful and what we all prayed and strived for, there are so many others who lost friends and colleagues via cancer and COVID-19 in the last few years. Dealing with that emotion is part of what led me to publish an online column headlined, “Who Shall Live and Who Shall Die.” Despite being NED, the memory of cancer (and the knowledge that your next scan might not be NED) never really goes away. I will always have some level of scanxiety about my cancer returning. On top of that, you are dealing with all the trauma that cancer leaves in its wake. There is a lot of repairing and rebuilding that has to happen for your life to go on. For example, my wife and I are still learning how to transition from being a patient and a caregiver back into being a husband and wife. We each have our own healing that needs to happen.
Lisa and I have been married for 26 years and she has as much of a traumatic legacy as I have. She went from all the burdens of caregiving and fears that she might lose her husband—right into the world of the COVID-19 pandemic. It was as if the world had opened for a moment and then COVID came hovering over us all. We were looking forward to traveling and going out as a couple. Yet, just as our world was opening back up, COVID seemed to close it right back down. Even as the NED reports stack up, our lives continue under dark clouds. Like cancer, COVID presents scary, unknowns about illness and even a risk of death. It can be overwhelming. All we can do is gather and follow the best medical knowledge, accept/adapt to the new normal, and try to find joy in a new way to keep moving forward. As most of you know, these struggles are catastrophic for everyone in the family. Our daughter Emily was in high school during my years of fighting colorectal cancer. She is now a sophomore at the University of Michigan and has had to find her own ways of coping with the turbulent, lingering fears. One relief for her is running. She has not missed a day in more than six months. For me, one of the places I heal best is on the basketball court. Since COVID and the resulting lockdowns and social distancing, I have not played indoors and miss my “happy” place very much. The long cold winter in the suburbs of Detroit has kicked in and COVID has kept us hunkered down and secluded like everyone else.
The physical healing process took time and is not over. I still suffer from serious peripheral neuropathy in my hands and feet, fingers, and toes, which has at times impeded my basketball playing. At this point, I have recognized that that’s something I may have for the rest of my life. But I will not let it stop me. Basketball is my happy place—being outdoors or in a gym surrounded by friends. Experiencing teamwork, trash-talking and physical exercise has been one of the greatest blessings and has impacted my emotional and physical healing so positively.
Besides my neuropathy, I’m in good shape and can do more future planning, like planning for our financial future, since cancer hit us hard financially. A lot of the work I’ve done during the last few years has been on a volunteer basis. I’ve served as president of the Babson Alumni Association (www.babson.edu), board member of the JCRC-AJC (www.jcrc-ajc.org), and as an active volunteer with various colorectal cancer advocacy organizations. Now, I am preparing to return to the full-time work force. That’s frightening at age 54: updating my resume, cleaning up my LinkedIn profile and hunting for the right job. After surviving stage IV cancer—twice—I need to find a job that can not only pay the bills but be deeply meaningful to me. I am not legally required to share information about my colon cancer with a prospective employer, but I have also been quite public about my experience, to help inspire others, and a simple Google search now turns up my story.
After many years of talking with others struggling to beat cancer, I know how important it is to transparently share our stories. We can’t do this alone. So, during COVID, I’ve been channeling my extra time and energy into the completion of my memoir, Shining Brightly, which is due out in mid-2021. While it is not just a book about cancer, I think that other cancer patients will appreciate it. There are several chapters about dealing with a Non-Hodgkin’s Lymphoma diagnosis in my 20s and my more recent experience with Colorectal Cancer in my early 50s.
The book’s overarching themes are entrepreneurship, resiliency, determination, mental toughness, and hope, surviving the dark or unsettling times (like a cancer diagnosis or COVID) and paying it forward. The message of the book is that we need other people. We are not meant to do this on our own. I describe one way I help others—and that people have helped me—as Cancer Whispering; and I continue to support and mentor others in their journeys. We call, we Zoom, we text. We support each other in whatever ways we can. It’s actually one special benefit of cancer that I’ve met and connected with such amazing people from all over the world and been blessed to receive and pass on hope and inspiration to others. Cancer is a humbling experience. We learn a lot about ourselves at a depth we rarely would explore without cancer.
Who you want to be, and how you want to impact the world changes when you live with cancer. I found, like a lot of other people who have made this journey, that we need to pay it forward on a daily basis as a way of giving back for all the others who have helped us along the way. Wherever we find ourselves, we can become that person who offers help, even if it is only a kind word as we check in by phone. My book invites readers, just as I do every day, to look in the mirror and ask yourself: How can I shine brightly for others each day?
A New Frontier
As treatments and therapies have improved over the years, more people are now living longer with cancer, which is wonderful. But living also brings new challenges. There is no blueprint for what life after cancer looks like. It is a new frontier for me and others. I recommend that both cancer patients and caregivers work on survivorship—planning for that often chaotic and fearful period that begins during treatment and hopefully extends into the years of hoping to stack up one NED report after another. Even in the search for NED, relationships remain under tremendous pressure.
If I leave you with anything, please remember that accepting help from others is a health-giving part of this journey. You are tougher than you know, at first, and together we are even tougher. Take the time to find hope and inspiration in your life and draw all the strength you can from another person, nature, watching someone else cross the goal line, whatever works for you. I am slowly and steadily putting the pieces back together. I am doing it my way and so can you!
Please, please, please check UR Colon and tell others to get Screened!
Howard’s book will be published in mid 2021. We’ll be posting updates as the website and social media pages are released. As we prepare for the book’s release, we are looking for individuals and discussion groups that may want to read early copies and share their responses with others. Keep in touch.