One day last week, I came home from work and spent the evening relaxing until my fiancé came home (he’s a chef so he came home about 6 hours after me)…I was just sitting on the couch watching something on Netflix when he walked in the door with a totally annoyed, borderline angry look on his face. I assumed maybe he had had a bad day at work, but instead he proceeded to scold me for leaving my keys in the lock of the front door. “Luckily we live in a safe building but you can’t do that Clarissa, you have to pay more attention!” My honest response: “I literally had no idea I had done it and had 100% remembered bringing them in with me, sorry!”
I like to blame my moments of craziness on #chemobrain. If you are on Twitter and search for #chemobrain, you’ll find a huge list of tweets from cancer survivors forgetting their keys at home, spraying their underarms with hairspray instead of deodorant, or suddenly failing to remember their pin number on a trip to the ATM. I love the sense of humor that so many survivors use to talk about their #chemobrain moments. If you are a teen or young adult and you’ve been through cancer treatment, chances are you have experienced #chemobrain in some way or another – maybe during treatment or even years afterward. Even though the stories can be funny, you’ve also probably found yourself wondering how to #dealwithit because #chemobrain can mean much more than just forgetting to take your keys out of the lock when you get home – it can be really frustrating and challenging too.
If you’re new to the cancer rollercoaster, or have not heard of the term chemo brain yet, it is essentially an umbrella term used to describe any cognitive (brain functioning) challenges that result from going through certain chemotherapy or radiation treatments. It is often described by cancer survivors as fogginess, trouble concentrating, or trouble processing information at the same speed as you may have been able to previously. I found that the Mayo Clinic provided a great overview of chemo brain and what to do about it: https://www.mayoclinic.org/diseases-conditions/chemo-brain/diagnosis-treatment/drc-20351065.
However, having dealt with chemo brain often myself, I have learned a lot about it along the way, so I wanted to share some of the things that I learned, especially the strategies that have helped me.
The first thing to think about is what strategies you might be able to use to get through those frustrating moments when chemo brain is making it really hard for you to #concentrate or #process information as fast as you would like.
I first started dealing with chemo brain in my first year of college, about 3 years after I finished my relapse treatment. I was a straight A student who could usually sit for hours and study or work on homework assignments. But, that first year, I found myself frequently having trouble focusing and processing information as well as I had in the past. I would have to read questions 3-5 times before I could remember and comprehend what it was asking enough to begin trying to answer the question. I would also find it incredibly difficult to focus on the studying for as long as I had been able to in the past. This meant I found myself in exams, particularly calculus and chemistry, where I could not finish in time. I ended up with significantly lower grades that first semester, simply because I could not get through all of the exam or quiz questions. I brought this up to my survivorship doctor at my annual survivorship follow-up appointment, over winter break after my first semester. That’s when she introduced me to the concept of chemo brain and what I could do about it.
I then spent the following year working through a bunch of strategies until I figured out what worked best for me. Some of the strategies I tried include:
Exercise. I have never liked exercise and getting into a regular exercise routine was very hard for me. However, I think regular exercise was one of the most helpful strategies to deal with chemo brain and I think it has even helped decrease the number of times I find myself in a fog, processing information slowly, or having trouble concentrating. Exercise can help decrease stress and anxiety, which can help you think more clearly. There’s a great article from Harvard Health Publishing that talks more about the ways in which exercise can help your brain: https://www.health.harvard.edu/blog/regular-exercise-changes-brain-improve-memory-thinking-skills-201404097110. I started regularly walking and running, followed by doing 30 minutes or so of yoga, after all of my classes for the day. Doing this before sitting down to study or complete assignments helped me feel relaxed and clear-minded so I found it easier to sit down, focus, and work efficiently. There are tons of ways to exercise in addition to walking or running so you can try whichever form of exercise you prefer.
Yoga or Meditation. I know many cancer survivors who have turned to meditation to help with chemo brain. I preferred yoga to meditation, so I don’t have much insight into meditation, but you can check in with your healthcare team or survivorship specialist about what meditation programs may be available for young people who are currently or have previously gone through cancer treatment. With either yoga or meditation, the deep breathing involved in both of these practices requires a lot of focus, and can help you to train your brain to better focus your attention. Also, as with exercise, the deep breathing can help reduce stress and anxiety, which can help you think more clearly.
Engage your brain regularly. Reading or doing word puzzles, like crosswords or word searches, are great ways to engage your brain and help train it to focus. I found that if I read in my personal time, and watched less TV, my concentration improved over time. Reading in your personal time, when you don’t need to study or work, also means you can practice focusing without the pressure of deadlines. I found that trying to read for 30 minutes daily, and then working up to reading for an hour each day, was a great way to slowly train my brain back into concentration. Reading before I went to sleep also helped me relax and was a great way to calm down and clear my head before I went to sleep, which helped me fall asleep faster and sleep better.
Art, music, and creative activities. As with exercise and yoga/meditation, art, music, and creative activities can help decrease stress and anxiety, which can help you think more clearly. I am personally a big fan of art projects, and like to paint, needlepoint, knit, or write. Writing in particular has helped me a lot. Updating my blog and writing about things I care about as regularly as I can has helped me hone my critical thinking skills. Writing requires you to structure your thoughts and review your work carefully, which is a great exercise for your brain. Taking time once or twice a week to do these kinds of activities, helps engage your brain in something you can enjoy, while also helping you relax.
Know what resources and services are available.
a. School accommodations. If you are in school, whether that be high school, college, or graduate school, you may be entitled to accommodations if you find chemo brain is making it difficult for you to keep up with your classmates or to get assignments done in the required amount of time. I had this problem with exams in college, and after obtaining a letter from my survivorship doctor, I was able to go to my school’s disability access office and obtain 50% extra time on all of my exams. In the US, cancer survivors are covered under the Americans with Disabilities Act, which means you can request accommodations like extra time on exams if you provide your school with a note from your doctor confirming your need for the accommodation. The school is then legally required to provide you that accommodation. In Canada, the Canadian Charter of Rights and Freedoms and the Canadian Human Rights Act protect the rights of people with disabilities at the national level, and there are other laws in place at the provincial level. Some schools may ask you to have your doctor complete a specific form that the school uses to process accommodations, so it is important to check in with your school about what they need from you before requesting accommodations. In the US, specific testing for cognitive challenges is not typically required and a letter from your survivorship specialist simply indicating your cancer history and your need for a specific accommodation like extra time will likely be all you need. However, in Canada, you may be required to also provide results from a psycho-educational assessment, which is a test given by a school psychologist or neuropsychologist that assesses a range of cognitive (thinking) skills. You can reach out to your school as well as your medical team or survivorship doctor to learn more about what you may need to do to get the accommodations you feel you need. If your school does not have a “disability access office” you can speak with your academic advisor or guidance counsellor about how to get such accommodations.
b. Workplace accommodations. It is important to understand what your rights are depending on the country in which you live. In both the US and Canada, cancer survivors are protected by anti-discrimination laws. You have the right to request reasonable accommodations in the workplace, which include things like flexible work hours (e.g. if you need to go to a doctor’s appointment, you are allowed to leave and then make up the hours later in the day or week). The National Coalition for Cancer Survivorship provides a helpful overview of your legal rights as a cancer survivor in the workplace in the US: https://www.canceradvocacy.org/resources/employment-rights/how-employment-discrimination-laws-protect-cancer-survivors/ The Leukemia and Lymphoma Society of Canada provides a great overview of the employment rights of cancer survivors living in Canada: http://www.llscanada.org/managing-your-cancer/employment-rights-of-cancer-survivors-and-caregivers
c. Survivorship follow-up appointments. Continuing to see an oncology or survivorship specialist is crucial to managing long-term effects from cancer treatment, like chemo brain. Your survivorship doctor can help you monitor how much chemo brain is affecting you over time, and work with you to find ways to manage it. They can also help connect you with resources and other support services that can further assist you.
d. Neuropsychologist or school psychologist consultations. One of the services your survivorship doctor may refer you to is a neuropsychologist or school psychologist. If you are a student in school, it may be necessary for you to meet with a school psychologist before requesting accommodations for school. The school psychologist can test your cognitive functioning (thinking and information processing abilities) to understand how you are doing relative to your classmates and to understand what accommodations you may need. A neuropsychologist can do this as well. For young adult survivors who may not be in school anymore, meeting with a neuropsychologist can be helpful to understand how exactly your treatment may be affecting your cognitive functioning and they can work with you on specific ways to address any problem areas.
For each cancer patient and survivor, chemo and radiation can affect your body differently. Therefore, it’s really important to keep seeing an oncology specialist or survivorship care specialist for as long as you can. They can help you understand what you should look out for, based on what treatments you received. They can also help you address late effects, like chemo brain, that you might be dealing with. If they can’t help you, they can also refer you to other specialists, like a neuropsychologist, who may be better able to help you. Late effects like chemo brain can be a bit tricky to work through and it can take a lot of time to work through a host of different strategies and resources before you find something that works for you. Take your time and keep trying!
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, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-three years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently lives in Sydney, Australia and works as a research assistant in the Behavioural Sciences Unit of the Kids Cancer Centre at Sydney Children’s Hospital. She is part of a team that focuses on developing interventions to help with the transition back to school for children and adolescents who have been diagnosed with cancer. In the future, it is her goal to become a pediatric clinical psychologist and she would like to continue to work in research to help improve the psychosocial support services available to adolescents and young adults who have serious illnesses. As a CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.