Rest Up

I’m tired of resting.

Go ahead, roll your eyes. Think: some burden. Your privilege is killing me. Oh, the whining.

ImohResting
Imoh’s good at resting!

I get it. I’ve lived many years of my life when I would have been thrilled to have time, especially generous quantities of it, to rest. To slow down the semester, not bring work home every night. Not to have a sick cat, a visiting writer, and a traveling husband all fall in the same week. Not to berate myself for neglecting to phone family more often because I’m too exhausted at the end of the day to make one more call, even to someone I love.

I’ve written elsewhere about the need for more rest, more leisure in our lives. With rest comes reflection, and with reflection, innovation. Not to mention that rest is fundamental to good health and self-care. I don’t by any means mean to malign rest, and I am extremely grateful to have the privilege to rest when I need to, especially when I know so many, whether ill or healthy but simply tired, don’t.

It would be better stated to say I am tired of having to rest. Tired of having to parse out my days, knowing if I want to enjoy an evening with friends, I shouldn’t go to the grocery store in the afternoon. That if I have a doctor’s appointment, it might be the only outing I have energy for that day. I think maybe I didn’t really believe the doctors or other survivors when they told me how fatigued I’d be, and for how long. I used to compile errands, thinking, hey, while I’m out, I’ll stop at X and take care of Y, too. These days I’m mostly a one-stop shop, and sometimes even then I come home and nap.

spoons3There’s an article that’s made its way around the internet about the “spoon theory.” The writer, Christine Miserandino, has lupus, and recounts the day, over lunch, a friend of hers asked what it was like to live with the chronic condition. On impulse, Miserandino grabbed all the spoons from her own and several surrounding tables, handed them to her inquisitive friend, and an analogy was born. Though the spoon theory initially described life with chronic conditions, the theory also applies to those with long-term illnesses. The basic premise: a person with chronic or long-term illness has a limited number of “spoons” (energy) to use each day and has to decide how to “spend” them. Different activities use up different amounts of spoons; the person has to plan carefully, because once a day’s spoons are used up, that’s it. For example, one thing Miserandino points out is that simply getting showered and dressed requires a spoon or two. As I gain strength, making myself publicly presentable takes less of a toll, but I still sometimes leave a little time between getting ready and going out so I can rest up for a few minutes.

Hubby Steve and I just spent a lovely weekend in New York City, the first traveling I’ve done since July. We started slow each morning, sleeping in and heading out for brunch between 11 and noon. Both afternoons we visited small museums for about two hours, then returned to our hotel for a couple hours’ rest before going to a show in the evening. We had a fabulous time, but the difference in our itinerary from our first trip to the city two years ago, when highlights included an afternoon walking tour of chocolatiers and going for a run through Central Park, was marked.

coloringbook
Coloring has meditative effects.

Some of my anxiety about resting probably comes from guilt. Though I do find value in rest, there is a part of me that feels like I should be doing something, doing more. Some days I get in a few hours of writing, or organize a file drawer or two in my office. But some days I don’t have the physical energy or mental concentration for much of anything, even reading. When I was really sick from chemo early on, I binge-watched television shows, but I grew weary of that fast. As a child, I only watched TV during the day when I was home sick, so I associate daytime TV-watching with illness, and it makes me fidgety. Instead, I’ve turned to podcasts and coloring books. Both have their perks: I’ve laughed a lot through the podcasts (laughter is the best medicine), and coloring is quite meditative. Still, there’s this little part of my brain that says, “Coloring? Shouldn’t you be doing something more productive?”

The first year I moved to Roanoke I contracted pneumonia in early January. When the doctor diagnosed me, he prescribed an antibiotic, then told me to come back for a check-up in six weeks. “Six weeks?” I asked, incredulous. Yes, he said, it would probably take that long to clear. I drug through each workday, went home and lay on the sofa until bedtime, then retired to my bed for the night, repeating the routine every day for weeks. One mid-March morning I woke up and realized, with surprise, “This is what it feels like to wake up feeling good!” I’d been sick and tired for so long, I’d almost forgotten what it felt like to be healthy. It was a revelation.

img_0361I’m looking forward to experiencing that revelation again, whenever it finally arrives. I know it might be a while. Until then, I try to remember what my friend Sarah said when I shared my frustrations with her about my lack of productivity, my inability to do all the things I need and want to do.

“You are doing something,” she said. “Something very important: you’re healing.”

And in the meantime, I have my headphones, and a plethora of colored pencils.

Everywhere’s a Metaphor

You know how when you buy a new car, suddenly that make and model starts showing up on every street you drive, every lot where you park? You’d never noticed it before you owned said car yourself, but suddenly it’s everywhere?

When you get diagnosed with cancer, the same thing happens. Instantly, it seems, every magazine you pick up has an ad for a new cancer drug, or a story of someone’s battle with cancer, or both. Every novel you read features a character with a mother or brother or friend who struggles with the disease (often used as shorthand for explaining the character’s current problems, especially if the mother’s/brother’s/friend’s cancer resulted in death). Watch any TV series long enough, and there will be a cancer mention, if not a full-on plot-line. Turn on NPR, and it comes up in that day’s interview.

Was I just not paying attention before now? Sometimes I wonder. I’ve lost count of the number of people I’ve met who reveal, once they hear I have breast cancer, that they are survivors: the technician who administered my pre-chemo EKG, a nurse practitioner I saw for an unrelated issue, my massage therapist. Friends have told me about mothers, aunts, sisters, co-workers who’ve traveled this path. It’s not that cancer had never entered my personal sphere: my sister-in-law is a six-year breast cancer survivor, and my husband, though his journey took place long before we met, is twenty-nine years cancer-free. But now I see it everywhere. Now it feels epidemic.

And with it come the metaphors.

fallingmetaphors

Professional hazard: when you’re a writerly type, and you’re trying to make sense of the weird detour your life has taken, the metaphors are dogged. You’re in the early stages of diagnosis and testing, and you drive to the beach. The weather is gorgeous for a few miles, then suddenly the gray gathers ahead, and your road leads straight into dark, threatening clouds. Rain pummels the car with such force you slow to a crawl. It lets up, a breather. You keep driving, round another bend, the storm crashes again. Just when it seems you’ll have to pull off the road to breathe without fear, the road bends westward, and the sky ahead shines clear and blue. You even catch a glimpse of a rainbow before it shimmers away. A bank of black clouds still hovers to the left. Will the rain follow you? Will the road turn directly into its path again?

You walk a mountain path through a nearby park. The first 100 yards of the trail are open, exposed to the blazing sun. It’s hot and uncomfortable until you reach the wooded portion of the trail that winds through the trees, where the dappled shade and a light breeze keeps the heat in check. It’s an out-and-back route, so you’ll trace those same 100 yards at the end of your walk. They weren’t fun at the beginning, and you know they’ll be even harder once you’re tired and spent and sweaty from the rest of your walk. But the only way home is back through.

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According to F. Scott Fitzgerald, “The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.” Chemotherapy, I think, is a first-rate test of a first-rate intelligence—and it’s a tough one, physically and psychologically. Embracing chemo means embracing toxic chemicals and nasty side effects that feel a lot like “harm,” even as you understand they’re doing “good” by helping you defeat the threat of the cancer.

Though the comparison feels more cliché than metaphor, chemo, for me, has been a roller coaster. Most breast cancer patients who have chemotherapy are on an every 2-week or 3-week cycle. As a two-weeker, I have one good week and one tough week. To concretize: imagine you’re going to be hit by a truck and catch the flu at the same time. For a week, you have intense body aches, nerve flare-ups, fatigue, nausea or other digestive issues, headaches, some fever. The worst passes after four to five days, followed by a couple days of lingering, less intense symptoms. You feel better, maybe almost normal, for a week. Then you willingly throw yourself in front of the truck again, because the truck is going to save your life.

I’ve been lucky, all things considered. My treatments have consisted of two sets of drugs, the first four a combination of Cytoxan and Adriamycin, and the second four rounds of Taxol. The first were the hardest, in part I think because of the ripple effect of adding drug-upon-drug to control side effects. In addition to the two chemo drugs in my drip, there was a steroid and two anti-nausea medications. I was also given a drug to boost my white-blood-cell count the day after chemo. Add Claritin to counter the bone pain brought on by the white-blood-cell booster, two at-home nausea meds should I need them, and laxative because all the anti-nausea meds cause constipation. I was already taking Ativan to sleep at night and Tylenol for discomfort. We’re talking twelve drugs going into a body that until a few weeks before hadn’t been processing anything more complicated than ibuprofen and the occasional Tums. Thankfully, I didn’t need all that was on offer—nausea wasn’t a major issue for me; I’ve only thrown up twice since I was eighteen. For what it’s worth, I did spend those eight weeks belching like a seventh grader. This phenomenon was not caught on camera.

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Taxol, for most, is more easily tolerated and requires fewer maintenance drugs, though I am in the 20% of patients (yay!) who experience fairly pronounced bone and muscle pain, and the cumulative fatigue that’s been promised is setting in. But on the whole I’ve done well. I’ve hydrated like crazy, brought yoga and massage on board to help, stayed in communication with my doctors so adjustments could be made, and (knock on wood) had no major allergic reactions. The worst event was a single scary blood pressure crash one evening after the first treatment.

The being yanked back and forth has been, perhaps, the toughest piece. The days I’m out and about, dressed, seeing friends, playing with hats: those are the good days. I seize them joyfully because I can (and because after a week parked on the sofa binge-watching The Mindy Project, I am restless and bored and eager to interface with actual people). It’s necessary to find and relish the joy, to resist succumbing to the undertow of I feel good now, but I know I’m going to feel bad again. The upside of knowing: I can plan around it. The downside: the pressure of trying to cram in everything I need and want to do, especially with increasing limitations. At first, I was fully functional during my “good” weeks. Then I started limiting myself to no more than 2 outside-the-house commitments or errands per day, then one, and I’m rapidly heading toward an every-other-day energy conservation model.

In truth, all of life moves this way, back and forth between the strong days and the hard ones. In a way, having some measure of predictability is a rare gift. In our everyday lives, none of us knows when such shifts will occur, when we will turn into the path of the storm, when the trail will grow hot and steep, when or if the rainbow might reappear.

My current shifts are dramatic and clearly delineated, but the biggest change is in my own awareness. These shifts have always been. They will always be. I can neither anticipate nor thwart them, and trying to do so just makes more wasted energy. The best, the only, place for me, for any of us to rest is here, now, in this intricate present.

porch oasis