A Childhood Leukemia Survivor Discusses Survivorship Care and the Power of Positive Thinking
Editor's Note: This is part of our Survivorship series. Please see other posts in this series.
For some childhood cancer survivors, long-term effects of their treatments can emerge months or even years later, in adulthood. Also known as late effects, they can include physical, mental, and psychosocial difficulties, from fatigue to learning problems to anxiety.
Meet Alyssa, a 2-time pediatric cancer survivor who was diagnosed with acute lymphoblastic leukemia at age 3. She experienced a relapse at age 9. Now in her early 30s, Alyssa shares her own experiences with late effects of cancer treatment. Although she received those treatments as a young girl, she is still navigating some of their effects years later.
But as Alyssa shares here, her cancer experience has also helped shape who she is today. Her experience, for example, inspired her to become a special education teacher. She has also spoken about her survivorship story at conferences and other events. Of her cancer journey, she says, “It doesn’t define who I am, but it has made me who I am.” Read on to learn more about Alyssa.
How do you personally define cancer survivorship?
Completing treatment for cancer is just the beginning of the survivorship journey. At age 12, when I completed my treatment for leukemia for the second time around, my understanding was of course very different from what it is today. I just knew that I had fewer doctor visits and no more chemotherapy medications! As an adult, I recognize that survivorship is a journey with challenges along the way. I am determined to face each challenge with determination and strength of spirit, knowing that with support from the health care community and others, I can overcome almost anything. Having perspective is so important. If I have a bad day, I remind myself that it is just one day, and in the big picture of my life, I am doing very well. I have also learned to count my blessings each and every day: my husband, my family, my friends, and my coworkers.
"I am determined to face each challenge with determination and strength of spirit, knowing that with support from the health care community and others, I can overcome almost anything."
What are a few long-term side effects of your cancer treatments, and how are you navigating them?
Managing chronic fatigue and the intermittent “brain fog” is an ongoing issue, but I have developed some strategies that help. For example, taking a walk or going to the gym help me to feel more alert and more focused. Eating at regular intervals, including healthy snacks when I’m feeling low, also helps. Coping with anxiety is a challenge as well. I have learned that it is a common challenge for anyone who has faced a terminal illness or traumatic experience. As much as that normalizes the experience, I still need to find ways to cope. Sometimes I just need reassurance from a medical professional that I am healthy based on objective criteria like regular bloodwork. I have also learned that working with my hands keeps me calm. I have enjoyed needlework projects, coloring, and other crafts.
You work as a special education teacher. How did your cancer experience lead you to that career aspiration?
When I was going through cancer treatment after my relapse at age 9, I struggled to keep up with my schoolwork. Not only did I miss many days of school for hospitalizations or clinic visits, I also had a hard time focusing. It often took me longer to process information and complete assignments. Fortunately, I was given extra time to complete schoolwork and exams, throughout my educational years, including college. I became determined to help other children who struggle to learn and pursued a degree in Education with a focus on Special Education. I knew that with the appropriate accommodations and strategies, I could help these children to overcome their difficulties and be successful in school.
As a pediatric cancer survivor, what worries and uncertainties do you have, and what are some ways you cope?
Being diagnosed with cancer again is a worry, whether it is a relapse of leukemia or another type of cancer. When I have large bruises, headaches, or other unexplainable symptoms, that is where my thoughts go. I sometimes also worry that I could have a long-term side effect of one of the chemotherapy medications. As a result, I am conscientious about follow-up visits with my doctors, and I am always reassured by the thought that if anything was amiss, they would pick up on it and we would deal with it right away. I try not to dwell on it and just live life to the fullest every day. As I like to say, “Live, laugh, love, and don’t forget to smile!”
"If you feel like something is wrong, ask your doctor about it. You know your own body and can recognize when something feels off."
You noted that it can be challenging for childhood cancer survivors to transition from pediatric to adult care. Do you have any tips that have been helpful to you?
Be sure to obtain all of your medical records from your pediatric doctors. Become familiar with any long-term side effects for which you may be at risk. If you can, find a job with benefits, including good health insurance. Find a primary care doctor that has experience working with cancer survivors. Get recommendations from people you trust, be it your pediatric oncologist or others, and don’t be reluctant to go to your doctor if you have a symptom that concerns you.
What role does self-advocacy play in your survivorship care, and why is it important?
It is important that you are familiar with the potential long-term side effects of your specific cancer treatments, including each chemotherapy medication. Make sure your doctor is screening you regularly for these potential issues. If you feel like something is wrong, ask your doctor about it. You know your own body and can recognize when something feels off. I felt like I had a thyroid issue for years and wondered if that could be contributing to my fatigue. Although I was tested regularly, and the results always came back normal, I kept pushing it. Ultimately, my doctor ordered a different blood test, and it came back abnormal. As soon as I started on the appropriate medication, I began to feel stronger and less fatigued. Know yourself and your body and trust yourself.
What is one of the greatest gifts you’ve discovered on your survivorship journey?
The greatest gift is the people I have met along the way. Medical personnel, other cancer survivors, teachers, cancer organization volunteers, neighbors, and so many others have given me hope, support, and inspiration. I hope to be able to do the same for others now, because being a cancer survivor is something I am proud of and is part of who I am today.
"I try to always have a positive attitude and look at the silver lining in every situation. You will get through this storm — just try to avoid negativity and look for the rainbows!"
What is one piece of advice you’d like to share with other survivors — something you wish someone would have told you when your cancer journey began?
Dolly Parton once said, “If you want the rainbow, you have to put up with the rain.” This has become my outlook on life. I try to always have a positive attitude and look at the silver lining in every situation. You will get through this storm — just try to avoid negativity and look for the rainbows!