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Alec, From Patient to Mentor

I was 19 years old when I was diagnosed with cancer. I couldn't finish my freshman year of college which meant saying goodbye to my new friends. I still wasn't confident they would stick around, nor the independence I had gained for myself. I moved back home and began what would eventually become 11 months of chemotherapy with 6 weeks of radiation.

My treatment was mostly in-patient, so I would spend about a week at a time at the hospital every other week hooked up to an IV pole. My tumor was sitting on the nerves that ran down my left leg so I couldn't actually move the leg on my own causing my muscles to atrophy down to almost nothing. I was in constant pain which also means constant painkillers. So while so much happened in those first few months of treatment, I don't remember the details for a lot of it. There were lots of meetings, pamphlets, papers, medications, and people amidst the throwing up, sleeping, and measuring just how much I was peeing on any given day. But most of the information I received was lost in the sea of other information beneath a fog of narcotics and nerve suppressants.

I may not remember much in the details but I do remember the feelings. The idea that one often feels the most alone in a crowded room is so applicable as an outpouring of support and well wishes came my way from every corner of people who know or tangentially know my family. This may, on the surface, seem like a great thing (and in many ways it is), but the feeling of constantly having people come over to drop off baked goods, which I can't keep down. I put on a smile to show everyone that I am going to be okay is exhausting. Even within my own family, I felt like I was holding the emotional lynchpin that kept us all moving forward. It became hard between the guests, my health team, and my family to find a moment to call my own. A moment to really sit with my own feelings and process.

As I began to build strength in my leg through physical therapy, rehabilitation, and just being able to move more, I was able to wean off the narcotics which kept me so hazy. I was lucky enough to be treated in a facility that was specially designed for people my own age. On days when I didn't have the energy to get out of bed, I could watch TV or play video games on systems in my own hospital room. Most importantly of all, I was treated next to other people around my age with cancer. Being able to see other people like me in my situation helped me to not feel so alone. In fact, I made some good friends in treatment and some amazing memories. I even started to reach out to people diagnosed after me in a kind of mentor position which really helped me feel like I was giving back.

I want to be clear about something though; I look upon my year of cancer treatment with a lot of fondness. There were a lot of things that sucked. Absolutely. But also, I felt that cancer was a decently straightforward problem for me. There was a plan for my life which I followed. I just had to settle down and do it knowing that I would be getting better just following that plan. I was so lucky to have the kind of financial, logistical, clinical, and emotional support I had and I am so grateful for it.

I often say that cancer was one of the best years of my life, and, for me, it's true. But I say that knowing that it is highlighted by the following year which I consider to be the worst year of my life.

After treatment, I went back to college and thought that because I was done with treatment everything would go back to normal. It didn't. What did go away was the support. I was anxious and so depressed that there were days I spent in bed staring at the ceiling because I couldn't work up the motivation to start a show or scroll through social media. I didn't have the tools to manage those feelings and everyone was telling me how happy I should be now that I was done. I had a narcotic addiction from treatment and I started to drink. I was blacking out 2-3 nights a week and still didn't have any of the emotional tools or recognition to manage my own experience. My anxiety attacks manifested as near dissociative episodes where I would blackout and stop responding to stimuli for a few minutes. I lost confidence in my future and my body. I suffered from body image and body confidence issues that still linger today.

My relationship with my family suffered as well, and they stood by my side the whole time. They didn't do anything bad or wrong or harmful, I just couldn't separate my trauma from treatment with them and so they bore the brunt of my distress. I couldn't be in the same room as them for more than 30 minutes without getting angry and yelling at them, even if we were sitting quietly doing our own activities. I remember one time where I got out of the driver's seat of the car at a red light and walked home the rest of the way because I couldn't bear to be with them a moment longer.

I needed help and I am so grateful every day that I sought it out. I asked my health team to connect me to a therapist in my area that had experience or training in medical issues so they understood my challenges better. Bit by bit over the next three years I worked on my emotional patterns, management tools, and trauma to rebuild the connection to myself and the world around me.

I am still working through a lot six years later and will probably continue to do so for the rest of my life. I know for me, I feel really stuck thinking about the future. I don't trust the future. I never know when my independence will be lost (recurrences, secondary cancers, late effects, disabilities). Thinking about what I want my future to look like can often be a panic-inducing experience or just a brick wall that I can't overcome. Even having an idea seems far away and impossible at times because for me the future is a luxury that isn't really afforded to people who've had cancer. This applies to my career, continuing education, moving, large purchases, life planning, money management/debt, and romantic partnership. How can you have a partner when you might disappear at any moment? If you can't have your own future, how can you share that future with someone else? Not to mention kids, many cancer patients have fertility issues or concerns. Is it worth taking responsibility for a child if you don't believe you may be around to support that kid? But now I have more tools to contend with those feelings and work through those thoughts.

I currently work at Teen Cancer America trying to give back to people like me by building specialized treatment programs for young people (ages 15-39). I didn't realize at the time how many young people never meet another person their own

age with cancer being treated in pediatric or adult oncology centers. We don't have treatment protocols or clinical trials for our age range. Psychosocial support is geared towards young children or older adults. Health teams aren't trained to communicate with the age range. Being able to work in the cancer advocacy space has allowed me to utilize my own experience for change and I hope to continue being involved with it moving forward.

- Alec K.

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