In Case You Ever Need to Know or I Ever Need to Remember

This post may be TMI for a lot of my readers, but while the experience of my twelve weeks in the chemo zone is fresh in my mind, I wanted to write about the answers to a question several people have asked me in one form or another: "How did chemo make you feel?"

Maybe someday my answers to this question will help someone else have some idea what to expect. It's not out of the question that I may go through chemotherapy again myself someday and may be glad I documented some of this experience.

Of course, no two patients' experiences with chemotherapy are alike. There are many chemo drugs and regimens and different people react differently to different drugs. Some side effects are common to almost all chemo drugs and others vary from one drug to the next.

Most chemotherapy involves a combination of at least two drugs. I was treated with Cytoxan and Taxotere. Cytoxan is particularly irritating to the bladder. Taxotere can cause peripheral neuropathy (nerve damage to the hands and feet that can be permanent) and is just generally hard on the nerves.

I received steroids and antihistamines by IV prior to each chemo infusion. With each treatment, the steroids kept the side effects at bay for about 48-72 hours, although from the beginning I felt odd and had the sensation that my skin was crawling. Once the steroids wore off, I felt my worst for the next two or three days. My first and last treatments hit me much harder than my second and third, but in different ways. By about two weeks after each treatment I was beginning to feel almost normal again.

So how did chemo make me feel? What were my side effects? Well, a lot of the things you hear about.

Fatigue that grew cumulatively worse with each treatment. I wanted to sleep all the time, but often had trouble sleeping at night. This was worse with my fourth treatment, which zapped my energy so completely that I spent the following weekend in bed.

Mental fogginess that made it hard to concentrate and think clearly.

Trouble focusing my eyes on small details and small print, more than I'm used to with my "over-fifty" eyes.

Ringing, roaring and pulsing in my ears.
 
A mild sore throat, irritating cough, dry mouth and heart burn.

Bladder pain, caused by Cytoxan, but I've had far worse from UTI's before chemo.

Mild nausea. Thankfully I didn't experience debilitating nausea. I received strong anti-nausea medication by IV with each chemo treatment and it worked well for me, but I felt queasy much of the time and had an aversion to many foods that I normally like. Most foods just tasted odd or like nothing at all. I have been a coffee drinker all my adult life, but couldn't stomach coffee during chemo. I also had no appetite for anything sweet.

Lower GI symptoms. These gave me new empathy and respect for people who live with chronic conditions like Celiac disease, Crohns disease and IBS. During chemo I experienced the worst stomach and intestinal pain and cramping of my life along with the kind of unpredictable lower GI symptoms that make you hesitate to go out for long or to get far from a bathroom. These symptoms were cumulative and were worse with my last treatment.

Mild bone and joint pain. Some patients experience worse pain than I did from Taxotere and/or from the Neulasta injection that is given the day after chemo to bring the white blood cell count back up.

Hair loss. This began right on schedule about two weeks after my first infusion. Like many chemo patients, I didn't want to let this phase drag on while I shed clumps of hair everywhere, so I had Rick buzz my head down to stubble.

Nerve pain. After my first treatment, the worst side effect I experienced was sharp, shooting, stabbing pains all over: in my head, throat, neck, jaw, back, stomach, side, legs. I probably should have called my oncologist, but I assumed this was just part of the chemo experience. At my next appointment before my second chemo treatment, he concluded that I had worse than average nerve pain from the Taxotere and he prescribed a high dose B-complex vitamin supplement that is more easily absorbed than over-the-counter vitamin B supplements. Although I experienced some nerve pain after my next three chemo treatments, it was much milder and less frequent.

In my next post, I'll share some tips that helped me cope with and prevent some of the side effects of chemo.

During my time in the chemo zone, I often felt like a shadow of myself. If you are a Harry Potter fan, you might say I felt like I had suffered a dementor attack. If you are a Lord of the Rings fan, you might say I felt like Frodo after he had worn the ring too long. Obviously I am a fan of both and I am happily starting to feel more like myself.