#BraveLikeSue
Name: Sue Morse
Age: 43
Diagnosis: Adenoid Cystic Carcinoma (ACC)
Years of Survivorship: diagnosed May 2020
Location: Massachusetts
How has running or staying physically active affected your cancer journey?
I was diagnosed with ACC in May 2020, the day after Mother’s Day. My ACC began as a tumor at the base of my tongue. Going into my diagnosis, I was feeling strong and healthy. My only symptom was that I couldn't stick my tongue out straight. I was running, doing yoga and staying active with our 3 girls (ages 13, 11, 6) during the pandemic. My diagnosis was a complete shock to our family.
As I started my treatments at the end of June 2020 (7 weeks of radiation every day and chemotherapy once a week), I vowed to continue being active to help delay/prevent the "radiation/chemo" fatigue. Continuing with yoga and running not only helped keep me sane (as it always does), but it also helped me feel normal.
I continued running 3-4 x a week for the first few weeks of treatments. I ran with my daughters, husband, and friends. It made me feel like myself to get outside in the fresh air and just run. Running gave me an escape from the doctor’s offices, from being clamped into a mask for radiation, and from the chemotherapy being administered through the port in my chest. When running, I felt like myself again. As it became difficult to swallow (eat/drink), I had to decrease my mileage, but so looked forward to those runs, albeit shorter and slower. Again, it made me feel normal.
Given that the pain was in my mouth, my friends now had to do all the talking but I could listen. My legs and lungs (which contains the cancer as well) could keep up just fine. Unfortunately, in my final week of treatment (week 7), I became too weak to continue running. I am now just on my third week post treatment and I am SO anxious to get back out there. I will have to start slow I know, and ease my way back... but I WILL get there.
What advice do you have for people on staying fit throughout their cancer treatment or recovery?
I think whatever physical activity you enjoyed before being diagnosed—whether it be running, yoga, biking—try to keep just a little bit of it in your routine. Not only will this help physically, but also mentally by reminding yourself that you are still in your body. Cancer treatments felt to me as if they were slowly taking over my body and I had no control. I had no control of the side effects from the treatments and no control of the medications I would have to take to help manage the pain. Being able to do just that little bit of physical activity helped me get through. The thought of getting back to it is exactly what is keeping me going now as I finish up the hardest part of my treatment.
What are some of your proudest accomplishments since being diagnosed with cancer?
Since being diagnosed with ACC, I have researched as much as I could. Just like Gabe, I was disappointed by the numbers and the prognosis. I hope there will be more emphasis on research. The molecular testing that is being done on the individual tumors is ground-breaking. Knowing the exact make-up of each tumor can hopefully find a targeted therapy that can work on an individualized basis. There are more options and more clinical trials now than there were just a couple years ago. I believe Gabe has brought so much light and awareness to Adenoid Cystic Carcinoma. I thank her and the foundation for all they have done to bring so much momentum to this rare cancer.
When I found out about the virtual 2020 Brave Like Gabe 5k that was taking place on Sunday, September 6th, I thought this would be a perfect goal for me, my family and friends. My husband spread the word and the amount of support we received was absolutely overwhelming. We are looking forward to Sept 6th, just days away now, to see our friends and family run and celebrate the very generous donations made to ACCRF which will fund research and help many patients newly diagnosed with ACC, as Gabe has said, feel HOPE.
Finally, I am most proud of my support system here at home. My husband has been my rock, taking on all of my responsibilities, driving to appointments, helping with our girls, the list goes on and on. Our girls have provided so much light and laughter along with wonderful questions and countdown charts to help me keep my eye on the finish line. Our community and friends and family have pulled together and surrounded us with so much love and support. We don't know how we could have done it without them.
How has Gabe's story impacted you or changed the way you view life as a cancer patient/survivor?
When I came across Gabe's story, I felt an immediate connection. I am by no means a professional runner. I just love to run. I love to run by myself, with family, with friends. I love the mental clarity it brings and the feeling of strength it gives me. I have run since high school and have made it a priority throughout my life. I pushed all of my three girls in jogging strollers until they could bike or run alongside me. I will continue to run and keep this a priority as my cancer journey moves forward.
Gabe's positive attitude also resonates with me. To get through a cancer diagnosis, treatment, and the daunting unknown that lies ahead, a positive mindset and spirit will help me tremendously. I am known as a positive person and while this may be put to the test, I will always look back to Gabe's wonderfully inspiring messages and quotes that she put out there. I have written many of them down in my journal and look back on them often.
What does being #BraveLikESue mean to you?
Being #BraveLikeSue means to always look to the positive lining that is somewhere out there. Sometimes that lining isn't always clear and it may take some time for it to present itself. However, I believe it is there and I will continue to fight my fight while searching for it.
Being #BraveLikeSue means that I will always think about our dreams as a family and what we truly want out of life. We will talk about these dreams openly and keep our hopes heard. We will talk about them often and change them whenever needed. My husband, our three girls and I all have a voice in our family and we will lead a life that we are all proud to be a part of. I will never give up this fight. I know this is just the first part of my journey, but I feel that if I could get through this first phase, I can get through the next, and whatever ever else lies ahead.
Gabe has inspired me with her relentless fight and her constant positivity to keep doing what she loves and not let cancer take that away from her. I will not let cancer take it away from me either.
What are you most looking forward to in the near future?
I am looking forward to cookouts with family and friends, eating delicious food grilled outside, sitting with my husband and our three girls and hearing about their days—which always turns into some reenactment of the day and us falling to pieces laughing. I can't wait to be able to see friends often and enjoy meals together (no more liquid diet!) and really just enjoy each other’s company.
Finally, I am really looking forward to making future plans with our family and friends. There are many adventures that we have always thought about doing and there are many brand new adventures that we want to share. There is no time like the present!