Random Thoughts on Chemotherapy

Nothing prepares us to go through chemotherapy. We’ve probably known people who have, but we can’t fully imagine what it felt like for them. We have a general impression it must be unpleasant, we know people often lose their hair and are nauseous and fatigued, but beyond that, we really just can’t imagine.

Then we get a cancer diagnosis and get to find out first-hand. We find out that yes, it’s exhausting. Yes, nausea is often a real problem. Yes, it’s unpleasant, and that’s probably a gross understatement.

Of course just how bad it is depends on the drugs we’re getting, whether we’re getting a single drug or combination, how our unique bodies react to the drugs, how healthy we are when we start, and myriad other variables.

With all that in mind, I want to record a few things I didn’t anticipate ahead of time that it might be helpful to remember if there ever is a next time.

• Hair loss: Hair generally starts falling out, if it’s going to fall out, about two weeks after the first treatment. (Note to self: get it cut short next time. That should make it seem less traumatic.) For some reason, head hair falls out faster than body hair, but eventually body hair will also fall out. There are advantages to this: not having to shave, for one thing. There are also unexpected disadvantages: staying warm, for example, and having to use makeup to replace lost eyebrows and eyelashes if one is concerned about appearance.
• Staying warm: I’m glad I didn’t start chemotherapy in the middle of winter. As the weather has gotten colder, I’ve had increasing troubles staying warm. I’m wearing two knitted caps (specially made for me by my dear friend Cindy) inside the house, and one knitted cap with a regular outdoor hat when I go outside, unless I’m wearing a wig. When the temperatures took an extreme drop in November, I was wearing four layers inside the house and was still cold. I think this is due to the hair loss (amazing how a little body hair helps us stay warm!) and also just being generally depleted from the chemo. One of the biggest problems was keeping my neck warm. I bought a fleece neck warmer on Amazon and wear it everywhere. It really helps.
• Nausea: The anti-nausea meds do help, but not 100%, and they tend to make me drowsy. During the worst post-chemo days, the best solution is to sleep as much as possible. Finding food to eat that looks appealing is a challenge, and I think it’s important to trust our cravings. We need to keep our strength up. I swear by Garden of Life Protein Powder and Greens Powder, which have given me extra nutrition when I was having a hard time eating. I will continue to use them for awhile until I feel like my health has returned to normal, which could take a few months if not longer. Ginger Ale and ginger tea help with the nausea, too.
• Neuropathy: This is a common side effect of some chemo drugs, particularly Taxol and Carboplatin, which I received. There doesn’t seem to be any good way to prevent it, but I believe acupuncture has helped at least a little. My oncologist recommended alpha lipoic acid, glutamine, and B12 supplements, but I can’t tell whether they made a difference. The neuropathy may improve, or it may not. Fortunately for me, it’s manifesting more as numbness than as pain. Gabapentin can be prescribed, but it treats the symptoms only, not the cause, and it makes me feel like a zombie. I’m using as little as possible, but sometimes it is helpful.
• Bone and muscle pain: Acupuncture definitely helped with this. After the one treatment I had where I didn’t have acupuncture, the bone and muscle pain was severe to the point where I wondered if I would be able to keep walking. Speaking of which, I recommend having a good prescription pain medicine on hand, if your doctor/oncologist will do this for you. Over the counter medicines didn’t help me much. I had good luck with Tramadol on the days when I was in quite a bit of pain. It helped me sleep. If you use this, be sure and take it with food.
• That nasty chemical taste: Fortunately, this only lasts a few days, and it’s a minor thing but can get to be really annoying. I find myself snacking a lot just to try to get rid of the taste (which is probably a good thing, because it’s important not to lose weight). On the other hand, a lot of things just don’t taste right. For me, this was especially a problem with water and coffee, which both tasted awful. It’s important to drink a lot of water to help flush the drugs through our system, so I found it helpful to put fresh lemon juice in the water. Strong flavors help the most. I also bought some Altoids to chew on. This too shall pass.
• Staying active: People told me to listen to my body, to rest when I needed to rest, to eat when I needed to eat, to ask for help when I needed it. All these things are very important. But I believe it has also been important for me to get up and get moving at times. We have barn cats, and this requires me to go out twice a day, walk down a fairly steep hill to the barn, feed and water the cats, visit with them awhile, and then trek back up the hill to the house, where I also refill several bird feeders. As hard as it was for me to do this some days, I think the activity was important to my faster recovery. It keeps the blood flowing, which gets oxygen to all parts of the body. A friend who has been an oncology nurse for 35 years said she thought I was doing really well because I didn’t just go to bed, but forced myself to get up and move around.
• Staying positive: Needless to say, attitude is very important. I had some down days, felt surly and gave into self-pity at my lot in life. But most of the time I was able to stay philosophical and wait for the troubles to pass. I saw my chemo adventure as a learning experience. I felt a great deal of empathy for other people going through chemo, especially children. I did a lot more praying. I leaned on my husband, friends, and God. I looked for ways to be grateful about as many things as possible. I actually kind of enjoyed getting the infusions, because that gave me an excuse to relax for five or six hours and just do things like read and talk to friends on Facebook.
• Doing research: I didn’t just rely on health professionals to tell me what I needed to do or make all my decisions for me. My husband and I did a lot of research, and I am continuing to research. I am not going to leave my future totally in the hands of health professionals, no matter how knowledgeable and competent they might be. It’s important for me to be proactive. I want to do everything I can to keep the cancer from returning. I realize I may not have complete control over what happens, but at least I want to know that I’m doing the best I can to take preventive measures and not passively sitting back and hoping for the best.

There’s probably a lot more I could say, but I’ll leave it at this for now. I do sincerely hope I don’t ever have to go through chemotherapy again, but if I do, I’ll be better prepared next time.