Surviving in the Chemo Cave

We humans like to organize things. First we have to figure out what we’re facing—then we work on making it easier. It’s no secret chemotherapy is daunting. During my initial consult with my medical oncologist, and subsequent sessions (one with a nurse practitioner, one with a pharmacist), I was handed a stack of informational sheets outlining the problems I might endure: low blood counts, diarrhea, heart palpitations, shortness of breath, bladder irritation, constipation, nausea, vomiting, mouth sores, bone pain, fatigue, depression, hair loss, fluid retention, neuropathy, infection, poor appetite, loss of fertility, nail changes, and finally, garden variety pain.

Everyone is quick to offer reassurance—encouragement that does not feel overly comforting in the face of this list—suggesting each person handles chemotherapy differently. They are also quick to add, “Most people don’t experience all of these side effects.” Fortunately, this point has proven to be true for me (so far, anyway). I’ve probably experienced 11 of the 20 side effects noted above. With the exception of hair loss, none of these side effects has lasted, though they can recur when the next infusion cycle comes around.

The first week was a shocker, though. During several bouts of despair (I’ll check off depression here), I wondered how I was ever going to handle eleven more weeks. Yet by the third week, I was learning some side effects slowly lift. Week 3 in comparison to week 1 was much more, well… not fun, but at least livable. It included moments of gratification.

Now that I’m beginning the third week of the second cycle, I’ve noticed I’ve become bolder about testing my limits inside the chemo cave. For example, one morning I was feeling pretty terrible. All of my instincts were leading me to the couch for the day. Though it felt like a risk, I forced myself to attend a gentle yoga class. I couldn’t believe how much better I felt after the class was over. The fact that I was an active agent in this shift from misery to relative comfort, made me feel more in control for a change.

Not all of my experiments have worked out so well. On another occasion, I talked a friend into taking me to a breast cancer support group. I quickly discovered I wasn’t ready to hear about situations that had gone on and on. I didn’t want to hear about treatments that sounded worse than what I was dealing with. Nor was I prepared for the reality of what might happen if my medical provider didn’t get it all. Perhaps a breast cancer newbie group would have worked better. Then the discussion could have focused on the immediate shock of cancer, as well as strategies for dealing with what happens after the first diagnosis.

In the end, two strategies have proven paramount to me for survival in the chemo cave. The first includes designing an abbreviated way of structuring the day. I’ve developed a list of activities I can do some of the time for relatively short periods. These include, submitting my writings to publishers and literary agents, gardening, housework, meditation, yoga, walking, reading, writing, television, and movies. During the first week of a given cycle, I can’t do many of these things. But as the cycle progresses, I begin adding a few to my day. If I can get through 4 or 5, the day goes by faster. It also feels more fulfilling.

I do try to notice if my ambition is spiking. The way I see it, the point is not to try and be as productive as I normally am. The point is to add structure and variety to my day. So I don’t garden for more than 30 minutes at a time. My walks run 30 to 60 minutes, depending on how much fatigue I’m experiencing. I take long breaks between some of these activities, occasionally napping.

My second strategy has been to figure out what truly offers momentary pleasure. I must admit, during my cancer-free days, I reached for food when I needed to feel better. In the chemo cave, food is unappealing, and it truly feels weird to be unable to “medicate” myself in this way. As an aside, in order to eat something, I’ve had to figure out what will go down easy—I’ve consciously worked at eating a balanced and nutritional diet. However, eating does not make me feel better.

Yet there are seemingly insubstantial moments—moments I wouldn’t normally find so satisfying—that have brought on a sense of contentment. Weeding, for example. Showers and baths. Imbibing in cherry iced tea at Soltan Banoo. Attending a matinee with a friend (matinees are recommended over evening shows, because there are usually less infected people in the theater). I’ve learned to watch out for the little things that make me feel better, even if my mood is short-lived.

While all of this may sound obvious and easy, it’s not. It takes effort to stay organized when one is fettered by such limits. It takes effort to discover activities and approaches that might make a difference for one’s physical and mental health. During my first cycle, I wanted to sleep all of the time, but this has been discouraged by my medical provider because it disrupts the normal sleep cycle. Thus I have worked harder to stay off the couch during cycle 2.

Yes, it’s tough to remain connected to the world during a course of chemotherapy treatment. One’s place in the world becomes a reason to fight at all.

Chemotherapy and my New Look(s)


During a “Chemo Teach” session, meant to prepare me for my first infusion, I asked my nurse practitioner if I should just shave my head before I got started—or wait until I saw a hag in the mirror. As a perimenopausal woman, I’m already down to a lot less hair. I never had thick tresses to begin with.

My friend Pam, who has been supporting me through my treatments, actually suggested a hair shaving party. She thought I could invite a few friends over and come up with some kind of ceremony before bringing out the electric razor. The remainder of the event could be devoted to a modeling session, giving me an opportunity to choose a few good scarves and hats. She’s a former oncology nurse, so she’s in the know about stuff like this. While I could see the appeal, I nixed the idea, telling her I’d already given my hairdresser a heads up. I was just waffling over when to make the appointment. I knew this question paled in comparison to questions like, “When do I take the steroids necessary for my first infusion?” Still, I was letting this one get to me. Secretly, I wanted to get it over with.

Instead of a party, I was thinking I could show off my new wig (compliments of the American Cancer Society) during my last – happy – dinner out with friends. I’d been warned not to eat anything I loved during the first few days following an infusion, as I might always associate this fare with the nausea sure to come on afterwards.

I was happy about the free wig. Three months of chemotherapy did not seem to warrant an expensive hairpiece. I knew I wasn’t likely to wear a wig when my cancer treatment was over (unless not enough hair grew back). Besides, I didn’t hate the idea of scarves, hats, or for that matter, a bald head. Yet I noticed the Cancer Patient and Family Resource Center at UCSD Medical was offering wigs and head coverings to cancer patients. While the selection wasn’t great, I found one that would do in a pinch. I thought, “Why not?” This would leave me with a choice of four new looks to play with over the next six months: bald as a monk, wrapped in an edgy scarf, dapper with a hat, or displaying a wig in a new style (for me).

In confidence, I don’t think I’ll make a good baldie. Some people with no hair do look elegant or cool. Some enjoy accessorizing with a “Who cares what you think? attitude. I could try to “practice” with no hair in the way a monk does, work on being less attached to vanity (I am a Zen student). I could adopt that same attitude with the scarf look. I find hats stylish, a fun option. The wig “will do.” Right now I have longer hair, but I’ve sported shorter hairstyles before. I suspect I won’t care about any of these looks, because I probably won’t want to leave the house very often. Though on good days, I do want to feel I can spend time in public.

My nurse practitioner wasn’t wild about the idea of shaving my head before it was necessary. She thought it would be too extreme—that I needed to ease into this, as I’d be dealing with a number of other shocks during the early weeks of chemo. “Your head will get cold,” she added. Thus the question was settled. I don’t have to go through my last good weekend exhibiting one of four new looks. I’ve got a little more time to be myself before accepting the tether of cancer treatment. It will probably change me for good.

Special thanks to the American Cancer Society and the Patient and Family Resource Center at Moores Cancer Center.

My appreciation to folks in the Grossmont-Cuyamaca Community College District for the new hat and turban.