Side Effects, from the experience of a patient

Side effects. You all know about them. You can read a generic list. But how does that look, really? Let’s go in the order that this patient feels them after the infusion.

First is the pain: headaches, body aches, joint pains like I’m old, and muscle pains. I’m talking charlie-horse in any part of the body at any time day or night. I walked two miles one day—which doesn’t seem like much but right now is huge—and when I got home my muscles all tightened at once and I had to crawl up the stairs to my room. Thankfully it ended there and I was able to carry the full hamper of dirty laundry downstairs and do what we moms do without ceasing.

Next is insomnia. Not good when one has small children. Who also don’t sleep all through the night. So maybe it works.

Nausea at the most inconvenient times. Constipation. Like can-anyone-do-a-colonic kind of constipation. Like your prescription anti-constipation medication isn’t working.

Then the steroid kicks in, and it’s aggression. I mean like if-anyone-is-hurting-my-little-sister-I’ll-fly-to-her-state-and-beat-them-with-my-broom-right-now kind of aggression. The kind of aggression that makes my husband say to my kids, “You know Mommy just had steroids, I’d do what she says.” Like the kind that makes me lose all I’ve gained in my effort toward patience with my children’s whining and my husband’s stubbornness. Yeah, it’s not pretty. But on a good note, I can accomplish a lot!

Rash! An unsightly, painful rash on my face (which looks a lot like acne but isn’t), and sometimes cold sores on my lips. A constant rash on my chest and back. The back rash is so itchy that it drives me to distraction and sometimes I unintentionally scratch it until it bleeds. Thankfully it's turtleneck time of year!

Vision. I’ve always had excellent vision. Before we went to Malawi in 2012, both eyes measured 20/15. Now I have to hold my books out at arm’s length to even begin to decipher what those letters are.

Along with joint and muscle pain is a lack of coordination. My son's Pogo Stick? Bad idea. I’m pretty much limited to activities that keep my feet on the ground, or swimming. Thankfully there are a lot of options!

Nosebleeds, and large bruises.

Reflux, like do-they-make-fire-extinguishers-for-throats kind of reflux.

Runny nose, ears that painfully pop driving up and down the mountain. Every time.

How could I forget exhaustion? I do most everything about half speed.

Hair thinning, nail ruining, skin aging.

Bloating!

Weight gain (for me) because of the large amounts of steroids, and because the chemo has caused me to develop hypothyroidism.

Depression and anxiety. It keeps me awake at night, solving problems of how to protect or evacuate my children in the event of a natural disaster, or other anxious thoughts. It always lifts on day 11 of my 21 day cycle, just like clockwork.

What is the most difficult, though, is what’s called “chemo brain.” I had a conversation with an acquaintance that we had not seen for several years. He lives in another part of the country, and was in California for a conference. His name is Alex, his first child is Daniel, and he has a much younger daughter. Another acquaintance that we know is also Alex, also has a first child named Daniel, and has a much younger daughter. While both are from the same country outside of the states, Alex and Alex look very different! When speaking to Alex, I confused him with Alex, and asked about Alex’s wife when I meant Alex’s wife, and so you see, it was very confusing. It wasn’t until I said, “So Daniel is about Jedidiah’s age now?” that I realized that I was speaking to Alex and not to Alex. Oh dear. It was really quite difficult, and I just couldn’t pull it together. I briefly thought to tell him that remembering has become a challenge since I’ve been on chemo, but I didn’t for two reasons. 1. In the off chance that he doesn’t know, I didn’t want him to feel sorry for me or to feel uncomfortable, and 2. I would then feel obligated to explain to nearly everyone with whom I have a conversation, because it happens all the time.

This is how tough it is. Yesterday Jamie was hanging some pictures for me while I was preparing supper. I saw the salt shaker was empty and went into the pantry to get the refill salt. I opened the door, stepped in and right at that very moment Jamie chose to ask, “Hey, can you come look at this for a minute?” I said, “Um, sure, just a minute” as if I were doing something. But I wasn’t, because just like that I had no idea why I had walked into the pantry. I stood there, thinking, stretching my brain until my head literally hurt, and just when I was sure I’d pull a muscle, I remembered, “Salt!” I grabbed it from right in front of me, put it on the counter, and went to look at the picture.