As the saying goes, „Hindsight is 20/20.“ When I finished chemotherapy in February 2011, I knew much more than I did when I walked into my first infusion four months earlier. I had learned things about myself and cancer that I never expected. Because, of course, I didn’t know what I didn’t know in the beginning.
Looking back now, here are some things I wish I had known when I began chemotherapy:
Cancer cases tend to change. Doctors may give you a prognosis and treatment plan based on the initial imaging or biopsy, but then change the prognosis or treatment after gaining more information about your cancer through further tests. After diagnosis, I kept telling myself that my cancer was in Stage I, no chemo was needed, so no big deal. I was angry when further tests revealed that the genetics of my cancer made it more serious and that chemotherapy needed to be added to the treatment plan. In hindsight, what I saw as „bait and switch“ was simply medical professionals responding to new information. That’s just how medicine sometimes advances. Expect it.
Initially, I freaked out because of the depictions of chemotherapy I had seen in movies. Then I freaked out again when I went to a support group meeting and met women who had already undergone chemotherapy. As they spoke about their suffering, fears, and side effects, I was certain that my experience would be just like that.
It wasn’t. Everyone’s experience of chemotherapy is completely different. At that support group meeting, I listened to a woman who had to endure multiple hospitalizations because her immune system was weakened. They were so sick that doctors sometimes had to postpone their infusion to give them time to get stronger. Another woman commented that they didn’t want to eat anything because everything tasted like metal. Another said they struggled with itchy skin rashes.
None of those things ultimately happened to me. Different things happened, and they were not fun. But they also weren’t as bad as I had feared. Remember that each body reacts differently to certain medications. You may have a tough time, or maybe not. It’s best to wait and see.
My reaction to the cancer diagnosis was what my husband calls „bibliotherapy.“ As a journalist, I researched it thoroughly. When I drove to my first infusion, I felt equipped with information to conquer chemotherapy. I had everything planned. (If only.)
I was sure I would immediately become sick. Instead, I went home from chemotherapy and had dinner with friends. On the second day, I felt tired. On the third day, I felt completely sick and immobilized. This lasted for 3 or 4 days. Then I gradually started feeling better. By the time I felt almost normal again, it was time for the next infusion.
I had expected to be constantly vomiting, but I hardly did. I hadn’t anticipated chemo brain, but my thoughts were so blurry that I could barely read a book. I imagined that I would end up in the hospital at some point during treatment, but I didn’t.
Each person’s pattern is somewhat different. Wait to see what yours is before making many plans.
My doctors warned me: With each infusion, it will get harder. Expect to feel weaker with each cycle.
I heard them say it, but I think I didn’t quite believe it.
I live on the California coast, where movement is less of a hobby and more of a way of life. That’s why I was determined to keep moving my body during treatment. I had the habit of taking a daily hike up a small mountain opposite my daughter’s school. In the first three cycles, I was able to make it all the way to the top. But in the last cycle, it took me an hour to get a third of the way up to the summit.
And I barely knew that the exhaustion didn’t end with the last infusion – the month after chemo was the hardest. I felt like I had been run over by a truck. That’s normal. Plan for it.
You may learn different lessons during chemotherapy – after all, your journey will be unique to you. But I hope the lessons I learned will be helpful, if only to remind you that you can’t have all the answers at the beginning of the journey. You will learn over time, and one day you will be able to share your own lessons.