Earlier this year, I wrote a blog post about my cancer diagnosis in my early 20s. It was a vulnerable post where I began to explore the challenges of coping with an acute illness during a time when I wanted to be independent. I was diagnosed about a month after graduating from college, and just a couple of months before I was set to move across the country alone for graduate school. In a nutshell, my whole world was turned upside down by the diagnosis followed by several rounds of chemotherapy and a few weeks of daily radiation treatments. This post talks more about the “after”, of the adjustment back to “normal” life.

What I found was that coping with my cancer treatment was the easiest part. I realize that sounds super weird, because who would ever say cancer treatment is easy? But having a list of things to do, a regular treatment schedule, and people reaching out to support me on a daily basis made it bearable. I knew what I had to do to survive, and so I did. I’m a goal-oriented person. So over the course of seven months, I routinely attended chemotherapy appointments, doctor check-ups, and finally, radiation appointments. I checked everything off the list. My mom, my primary caretaker during that time, reminded me about using my special mouthwash to prevent mouth sores, to stay out of the sun, and the list of things to eat or avoid depending on how the chemotherapy affected my gastrointestinal system that week. We did everything we needed to do, always. My job was to be a good cancer patient, and I did it well.

After 6 chemotherapy treatments and a number of CT and PET scans that is scary to admit (research is showing that fewer scans is better for long-term prognosis as additional radiation can actually cause different types of cancer later on), I was cancer-free! It was October 12th, a Friday (my favorite day of the week). My oncologist called to let me know. I cried in the bathroom with my mom and sister. The relief was instant. I celebrated with sweet friends that night, dancing and laughing and feeling a level of gratitude that is hard to explain. But I wasn’t done yet: radiation was up next.

Radiation hit me harder than I ever thought it could. When I received the radiation treatments, I was technically “cancer-free” but it is standard precaution to follow-up with radiation to kill any cancer cells that may be lurking and ready to wreak havoc again later. Every day at 7:30 in the morning, I pulled my bald, skinny, pale self out of bed and drove to the hospital. I received tiny tattoos on my chest and armpit so the radiation was directed to the tumor area. Chemo and radiation together can create a high risk for other types of cancers later (especially breast cancer, in my case), so the radiologists do their best to radiate the smallest area possible. The radiologists would set up the laser beam, tell me to hold very still, then run as quickly as possible out of the room to avoid radiation themselves. Lying on the table under that giant machine is a very lonely place. I was told not to wear deodorant or lotion on my skin; I forgot once, and later that evening it felt like my chest had been singed. I didn’t make that mistake again.

After 17 treatments, it felt like I had been beaten into the ground. I couldn’t get enough sleep, ever. But the problem was that the experience was invisible. You couldn’t see anything from the outside. I carried around fatigue like an invisible weight. But I was better, right? The cancer was gone. All I wanted was to be better.

A job felt like a natural next step after not being able to work for 3 months (not to mention the boredom I felt), but my body wasn’t physically up to it. I took a job working part-time about 5 minutes from my house, but on the third day I was supposed to go in, I could not get out of bed. I tried several times, cried for a while, then finally called in to let my supervisor know I wouldn’t make it to work. My body hurt in ways I never thought possible. It would be 6 more weeks before I was really able to commit to a job.

I wanted so desperately to believe I was all better and that I could be normal again. I think my family wanted that, too. I wasn’t sick and I wasn’t better, and that is really confusing for everyone. How long does it take to be fully well again after you have cancer? I didn’t know, and I didn’t like that. My life plan and expectations felt so decimated that it was hard to determine which way was up. I was living with my parents when I wanted to be independent. I was working at Target months after graduating college, while I was supposed to be in Seattle studying social work and learning how to change the world. I was grumpy and annoyed most of the time, confused and sad, while I felt I was supposed to be feeling grateful to be alive. I was grateful. But I was frustrated with my life and myself.

When your life is stripped down and your goal is to survive, bouncing back to who you were before isn’t really an option. What I see now is that I was grieving an ambiguous loss. I didn’t have a name for the experience until recently when I heard the concept for the first time on my favorite podcast, On Being. I was still alive but I had lost so much and it was really hard to understand how to move forward. There are a lot of books about how to manage an acute illness, but there were not any that I knew of about adjusting to your “new” life after yours has been changed irrevocably.

So to be honest, I muddled through. I spent a lot of time with friends, and it helped me to feel a little more normal. It was hard to see their lives progressing and mine feeling stagnant sometimes, but having the opportunity to talk about getting back on track felt good to me. I continued planning for my move to Seattle and preparing for graduate school. I slowly and steadily moved toward my goals again, off balance and a little unsure. It felt a bit like I had gotten lost and was finally getting back to the path I needed to be on.

I eventually moved to Seattle for graduate school. My confidence was low and it took months to adjust to life as a graduate student. I had moments of wanting to quit and be done. I briefly considered dropping out of school and moving back to Michigan. I felt sorry for myself sometimes, and that isn’t a productive place to be. But something shifted when I really started taking a good look at my health. I stopped taking birth control pills after 7 years of being on them, realizing the hormones put me at risk of yet another cancer diagnosis in the future. I started acupuncture treatments and eating well, learning more about how to balance out my vegetarian diet, and eat as many fruits as vegetables as I could in a day. I started moving my body regularly and exploring a yoga practice. These ways of getting back to myself are what shifted my perspective and helped me really begin to access the deep gratitude I had for my aliveness. I realized self-care was not something I needed to do occasionally; it would need to be a way of life to prevent future illness and really know what my body was needing. I didn’t need to be ill to have a good reason to take care of myself.

This story doesn’t wrap up with a bow at the end, as much as I wish it did. I still think about having had cancer. When I get sick now, it’s my first thought. That time of my life still feels strange to me; I’m still healing in some ways. When I feel afraid or I start to doubt whether I can accomplish something or tolerate discomfort, it takes me a moment, but I go back to that time and I remember my experience. I now tell a story of survival. I am resilient, I am lucky, I am grateful. And I am always learning.

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