As the saying goes, “Hindsight is 20/20.” When I finished chemotherapy in February 2011, I knew a lot more than when I walked in for my first infusion 4 months earlier. I had learned things about myself and about cancer that I had never expected to learn. Because, of course, at the beginning, I didn’t know what I didn’t know.
Now that I look back, here are some of the things I wish I had known as I started chemo:
1. Don’t cling to any one test result or prognosis.
Cancer cases tend to change. Doctors may give you a prognosis and treatment plan after the first image or biopsy, but then change the prognosis or treatment after gaining more information about your cancer from further testing. After diagnosis, I kept telling myself that my cancer was stage I, no chemo needed, so no big deal. I was angry, then, when further tests revealed that the genetics of my cancer made it more serious, and that chemo would need to be added to the treatment plan. Looking back, what I saw at the time as “bait and switch” was simply medical professionals responding to new information. That’s just the way medicine progresses sometimes. Expect it.
2. Don’t freak yourself out with chemo horror stories. Each chemo experience is unique.
First, I flipped out because of the portrayals of chemo that I’d seen in the movies. Then, I flipped out again when I went to a support group meeting and met women already going through chemo. As they discussed their suffering and fear and side effects, I felt sure that my chemo experience was going to be just like that.
It wasn’t. Everyone’s chemo experience is completely different. In that support group meeting, I listened to a woman who had endured multiple hospitalizations because her immune system had been compromised. She was so sick that sometimes the docs had to postpone her infusion to give her time to get a little stronger. Another woman said she didn’t want to eat because everything tasted like metal to her. Yet another said she was struggling with itchy skin rashes.
None of these things ended up happening to me. Different things did, and they weren’t fun. But they weren’t as bad as I’d feared, either. Remember that each body reacts differently to particular drugs. You may have a tough time, or you may not. The best thing to do is wait and see.
3. Don’t plan your chemo response until you’ve gone through your first infusion.
My reaction to a cancer diagnosis was to dive into what my husband calls “biblio-therapy.” As a journalist, I researched it to death. As I drove to my first infusion, I felt armed with information to vanquish chemo. I’d planned out everything. (If only.)
I was sure I’d get sick immediately. Instead, I went home from chemo and had dinner with friends. The second day, I felt tired. The third day, I felt completely sick and immobilized. That lasted for 3 or 4 days. Then, gradually, I got better. When I felt almost normal again, it was time for the next infusion.
I expected to throw up all the time but hardly did. I didn’t expect chemo brain, but my thinking got so fuzzy, 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.
Everyone’s pattern is a little different. Wait to see what yours is before you make a lot of plans.
4. The effects of chemo are cumulative. They get worse with each cycle.
My doctors warned me: Each infusion will get harder. Each cycle, expect to feel weaker.
I heard them say it, but I guess I didn’t quite believe it.
I live in coastal California, where exercise is not so much a hobby as a way of life. So I was determined to keep moving my body as I went through treatment. I was in the habit of taking a daily hike up a small mountain across from my daughter’s school. For the first three cycles, I could make it to the top. But by the last cycle, it took me an hour just to get one-third of the way to the top.
And little did I realize that the exhaustion didn’t end with the last infusion — the month after chemo was the hardest of all. I felt like I’d been run over by a truck. This is normal. Plan for it.
You may learn different lessons as you go through chemo — after all, your journey will be uniquely yours. But hopefully the lessons I learned will be of some help, if only just to remind you that you can’t have all the answers at the beginning of the journey. You’ll learn as you go, and someday you’ll have lessons of your own to share.