A College Student and 2X Leukemia Survivor’s Perspective
I was diagnosed with acute lymphoblastic leukemia (ALL) for the first time at 2 ½ years old, and went through 2 ½ years of treatment. I then relapsed when I was 13, at which point I went through another 2 ½ years of more intensive chemotherapy and radiation treatment.
When I finished my relapse treatment, at the age of 15, I felt liberated. I had finally conquered the disease that had taken over such a significant portion of my childhood. Little did I know, navigating survivorship would present a whole new kind of challenge.
There is so much to consider when talking about the long-term impact of cancer treatment. I want to take this opportunity to share my experiences in an effort to provide examples and advice to other young people navigating the challenging changes of life as a childhood cancer survivor.
While I am always open to talking about my cancer treatment journey, I find it much harder to talk about the way that my treatment has permanently affected me – how it has affected my mind and body months and years after my treatment ended. However, these effects are perhaps the most important to talk about because they have the greatest impact on my quality of life.
I can say that the physical impact of treatment has been less of a challenge for me because I have slowly come to terms with it all. The scars on my chest from the two port-a-caths I had, the stretch marks covering the backs of my arms from the steroids I had been on, and the lower back problems resulting from the 40+ spinal taps I have had in my life were certainly difficult to get used to, but I managed to do just that over time. What did bother me, and continues to bother me, is the impact my treatment has had on my mind.
During my freshman year at Duke University, I began having problems finishing my tests on time and getting my homework done. I had graduated high school with a 4.6 GPA, so struggling in school was not normal for me.
The bigger issue is that my entire identity has been built around my academic achievements. I have never been athletically or musically inclined. But, I love school. So, I spent my life cultivating my academic talents. I excelled in high school and made it to my dream university. I was so proud of myself for getting there, for proving to myself I was really good at something. When I began to have trouble in school, and saw my grades dropping, I was so scared by the possibility that I could lose that academic ability which had become a key part of my identity. If I lost that, what would I be left with? I felt so afraid.
I tried to ignore the problem and just study harder, but nothing worked. I don’t know how things would have turned out had I not had my annual visit with my survivorship doctor during the winter of my freshman year. During that appointment, I learned that trouble completing tests and homework on time was an indication that my ability to process information was likely slowed. I was experiencing a challenge quite “normal” for young cancer survivors. The doctor said many survivors experience slowed processing or problems with executive function (time management, planning, etc.). Although I was so angry about this news, my doctor immediately informed me of all of the ways I could address my processing problem. My sense of hopelessness turned into hope!
With her help, I was able to make an appointment with the Office of Student Disabilities at my school. Through that, I was approved to receive 50% more time on tests. I was also referred to a learning specialist, and met with her weekly for a semester, during which time she taught me study tips that helped me work more efficiently in spite of the extra time I needed to process information. The semester after I made those changes, my grades increased and my stress level went down. I finally felt like I was capable again.
I have found that the first steps to coping with the long-term effects of treatment are recognizing and accepting them. It will be impossible to recognize them if you do not know what to look for, and the best way to know is by meeting with a specialist in long-term survivorship. Acceptance is easier when you know how to access resources to manage challenges. In my case, knowing my academic struggles were related to my treatment was helpful because it made me realize the cause was out of my control and I learned that I could reach out to the Office of Student Disabilities.
No matter what your cancer history involves, it does not necessarily have to have a negative impact on your future. My four biggest pieces of advice for managing the long-term impact of cancer treatment are:
- Recognize when something does not feel right and, instead of getting scared, get information.
- Visit a survivorship specialist regularly, at least once annually, so you can be aware of potential long-term challenges and ways to address them.
- Recognize that it is okay to ask for help – meetings with the Office of Student Disabilities are nothing to be ashamed of.
- Connect with other survivors so you can find support and understanding, both of which are powerful and positive factors in coping with the long-term impact of cancer treatment
Most importantly, however, remember you are not alone and that there are resources available to help you understand and manage the challenges you may face.
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, when her cancer relapsed. So, she went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-one years old and a senior at Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. It is her goal to become a clinical psychologist after she graduates from Duke, and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. You can read more about Clarissa on her website and blog at www.teen-cancer.com.