Making Waves with Hope is a series of inspiring messages by leaders in the Swim Across America community during this uncertain time. The Denton Family helped bring Swim Across America to St. Louis. Walter and Kathy Denton have been married for 20 years and their daughters are Ally (17) and Jenna (14). Walter has been battling cancer since 2013 and Kathy is the Event Director of SAA-St. Louis.
In 2013, the world as we knew it changed. We had a fear of the unknown and at times we felt overwhelmed, anxious or depressed. We were hypervigilant about germs and exposure to viruses. We lost our sense of safety, security and predictability. We were uncertain about the future.
This may sound similar to our current unprecedented times in our country as we face COVID-19; however, we are referring to our family’s battle with cancer. While we understand that the situations are different, there are many lessons our family learned during cancer that might be helpful as you navigate through this uncharted time.
Since Walter’s original diagnosis of undifferentiated pleomorphic sarcoma in 2013, he has spent more than 100 days in the hospital. This included chemo treatments, surgical procedures, multiple infections and a stem cell transplant due to chemo-induced myelodysplastic syndrome (MDS). During that time, we developed our own survival techniques and hope they might help as our world is faced with a pandemic.
Manage Your Expectations.
Walter Denton (cancer survivor & father): Living through a cancer diagnosis and treatments can be like a roller coaster: good news then bad news then uncertain news. Your health and future are only as certain your next CT scan or blood test. When will the journey end?
It is easier to cope if you manage expectations so that you will not be disappointed and demoralized with each setback. We were always convinced that we would get through this horrible experience, but it would not likely be tomorrow or next week. We understood early on my cancer diagnosis was a marathon, not a sprint.
You Are Not Alone.
Kathy Denton (wife & mother): I will always remember the first time I visited the 7thfloor of Siteman Cancer Center in St. Louis. I had so many emotions going through my mind but as I looked at my husband, I kept thinking he looked so healthy and so many people around us looked so frail. When they called his name to take him back for vitals, I had to walk away and my emotions started to overflow. As I looked out the window, I became very angry that the whole world still seemed to be going on around us, yet we felt as if the world had stopped. I felt very alone and overwhelmed. Those thoughts faded quickly as I realized we were not alone. We soon met many people who were also dealing with a cancer diagnosis and an uncertain future. Additionally, our friends, family and church provided comfort and supported us in many ways. We were not alone.
Ally (teenage daughter): My friends’ families were so supportive. I would spend the night on a school night at a friend’s house, or they would take me to practice. My teammates and coaches supported me through it all. I’m not the biggest talker, but the people that were there for me, just there, really showed me that I do not have to feel alone in a time of uncertainty.
Develop a Routine, but Understand It May Not Work for Everyone.
Walter: During my stem cell transplant, I was scheduled to live in a hospital room for at least 30 days. That is the ultimate “shelter in place” in that my life was reduced to a 10 x 10 room and I had to wear a mask just to walk on the hospital floor.
I understood early on that I needed to build structure into my days:
- I did yoga every morning, no matter how rotten I felt.
- I read from a devotional book after breakfast to give me a spiritual foundation.
- I read local and national news on my laptop every day to stay in touch with the outside world.
- I stayed in touch with family and friends (by phone, email, and FaceTime) to strengthen my relationships and reinforce that I am not in this alone.
Being isolated does not mean being alone. Enrich yourself and your relationships through intentional outreach to your family, friends, and environment.
Kathy: While Walter maintained a daily schedule, I felt as if my life was always in chaos juggling a job, being a mom with two active kids, and also being a supportive wife and caregiver. One of my routines that changed the most was exercise. Before cancer, I woke up at 5 am every day and went to the gym. With two young kids at home, that was no longer an option but I also recognized I needed exercise for my own mental health. Over time, I purchased an Arc Trainer on Craig’s List and also bought weights, a workout bench and a trainer for my bike. While I didn’t enjoy working out at home as much as the gym, I did what I needed to do at the time.
Listen to the Experts.
Kathy: As soon as we learned of Walter’s suspicious mass, I immediately began consulting Dr. Google to find out what we might be dealing with. We quickly transitioned from “we don’t think this is cancer and if it is, it should be highly treatable” to … “this is highly aggressive and we need to start treatment right away.” In our situation, I felt like I was on a steep learning curve but quickly realized, while it is okay to get a second opinion, always look for reputable resources and trust those who have focused their career and education on our specific diagnosis.
Ally: My dad was diagnosed with cancer when I was in fifth grade, meaning I didn’t fully grasp all that was going on. I was scared that my dad wasn’t going to make it. My only experience with cancer was my dog, who had his leg amputated and died two days before my dad started chemo, and my grandpa, who was diagnosed with leukemia on Easter and died three weeks later. In this time, however, I had to listen to my parents (my experts) to understand the situation in itself. Without them, I could never have been able to see the truth of the situation.
Walter: There was a point in my treatment where there was no road map for what to do next. My doctors said that they had never treated anyone in my situation (sarcoma, stem cell transplant for MDS, sarcoma recurrence). So, we looked at the possibilities, weighed the probabilities, and went with the option that had the greatest chance for success. I wasn’t sure what I was getting into, but I am grateful for my doctor’s candor, courage and determination.
Acknowledge the Heroes.
Walter: I would not be alive without the efforts of countless people behind the scenes. First of all, I had incredible doctors and nurses who led me through my various surgeries, tests, and treatments. I also benefited from doctors who sponsored clinical trials that I participated in. I received blood and platelet transfusions from generous donors who are never recognized for their anonymous gifts.
Most importantly, I am alive because of the stem cells that were donated for my stem cell transplant. I will forever be indebted to my “brother from another mother” who shared his bone marrow when mine failed. I am living with his stem cells and immune system, and I am grateful for him and all of the other heroes.
Jenna (teenage daughter): There were many adults that helped us when my dad was in the hospital. I went to a friends house almost every day and they made sure I didn’t go hungry and also helped me with homework. I had many teachers that helped and they went above and beyond. Friends and our church brought our family food. We even had someone bring my dad home from the hospital in a snow storm. Adults really help each other when someone is going through tough times. Really, my dad was my biggest hero because not only did he stay his silly self, he also beat the odds.
Continue to Celebrate Milestones.
Ally: My fifth grade year, I spent my birthday in the hospital so that I could be with my family. There is a picture of me in the hospital with an ice cream cake wearing a green Hollister shirt. I still have that shirt, and every time I wear it, I think of that time and how far we’ve come.
Give Yourself Something to Look Forward To.
Kathy: Walter’s sister lived in Hawaii and our family was planning to visit them for Christmas 2013. Instead of going at Christmas, we scheduled a trip for when his treatments were supposed to be completed the following summer. We had no idea that he would have so many treatment delays and were grateful his doctor allowed us to travel in July, even though he still had his last round of treatments to go. Planning experiences became a coping mechanism for me (especially around scan time) because I needed something to look forward to!
Jenna: Always get insurance for everything you do. We cancelled lots of trips and experiences. It’s okay to be sad or mad but chill out and don’t stress. If something is cancelled now, it gives you something to look forward to later.
Joy is Contagious. Use Your Situation to Provide Hope to Others:
Ally: In the time we stayed at the hospital, my family became friends with nurses and doctors. Rainbow Loom was really in at this time, and I loved making bracelets, so I made rainbow loom bracelets for the nurses. I was able to give hope to those that see people in pain all day by making bracelets.
Walter: While we would not want to go through this again (or wish it on others), we have tried to use our experience to help others. I don’t feel like a hero, but people have expressed to me that they are inspired by my story. We have tried to pay it forward in numerous ways:
- Developed the Swim Across America fundraiser for Siteman Cancer Center
- Helped coordinate the Cure Sarcoma 6K fundraiser for the Siteman Cancer Center and Sarcoma Foundation
- Helped coordinate a Be the Match donation drive for the bone marrow registry
- Joined the American Cancer Society local board of directors
- Presented to local civic groups
- Purchased gas and parking cards for other cancer patients
Everyone Copes Differently, and That is Okay! It’s Also Okay to Ask for Help.
Kathy: At times, I held it together really well and at other times, I made some unhealthy choices. I barely slept. I drank too much. People drove me insane and I had no filters to help manage my emotions. One day I finally had a moment where I realized I needed help. I contacted the counseling office at our cancer center and met with someone twice before feeling like I was back in control of my emotions again. That reset helped me realize I needed outlets to express my emotions. I have a small group of prayer warriors who still lift our family up in prayer and I have a small group of friends from different times in my life who have become a huge support for me.
Walter: I was a swimmer in high school and college, and swimming was a lifeline during my cancer treatments. The pool provided continuity to my previous life and calmed my anxieties. Swim Across America was a perfect outlet for my energies where I could channel my love of swimming into a force for good by raising money for the Siteman Cancer Center in St. Louis.
Jenna: I try to look for and provide humor in all situations. I didn’t always like going to the hospital, but when I was there I was pretty much the comedy relief. I made up skits and made fun of my dad walking on crutches and I made everybody laugh. Making my family laugh helped me feel like I was contributing.
You Will Be Changed After this Experience.
Kathy: I try to apply the Marie Kondo principles to my life. If something doesn’t bring me joy, I don’t want to be a part of it. This has allowed me to reprioritize what is important in my life and spend time with people and things that bring me joy. Quality time and experiences are important for our family and we try our best to make this a priority.
Walter: The things you think are important before a cancer diagnosis are not the same things that are important after a cancer diagnosis. The thought of dying from cancer clearly refines your priorities. While my job was (and is important), it is not more important than my family and the relationships I have cultivated over my lifetime. Would I see my children graduate from high school and college? Would I see them get married? Would I meet my grandchildren? Would I be able to retire and travel the world with my wife? These questions immediately generated much more gravity than before.
I have cherished my children’s sports and activities so much more now that I faced the possibility of missing them forever. We have made efforts to connect and visit our friends rather than assume we will get to it “sometime.” Facing mortality forces you to live in the moment and enjoy the present and not place your intention in a future that may not come.
We often reference our lives as “Before Cancer” and “After Cancer,” as our family profoundly changed. We live differently and perceive ourselves and the world differently through the lens of cancer. All of us will see the world differently through the lens of pre-COVID and post-COVID.
The Denton family will be leading the fundraising charge for Siteman Cancer Center at SAA-St. Louis again this year. You can read more on Walter’s story and donate should you choose on his personal fundraising page.