side effects – Still Life, Beyond Cancer

Losses and Lessons

March 6, 2021Sandee McGlaun

Yesterday I learned that my epiglottis is not functioning properly. That sounds like the opening line to a bad joke, doesn’t it? “Epiglottis” is such a funny-sounding word. It has kind of a serious function though, and apparently–thankfully–I’m good at compensating for its shortcomings. “Compensating,” also the crux of many a punchline. I wish I were finding it easier to laugh.

We are rounding on to a full-year of pandemic isolation, and we’re all feeling the fatigue and frustration. For me the pandemic has been co-extant with an intense treatment regimen, and lately it seems like I can’t catch a break. I’m loathe to create a metaphor that demonizes felines in any way, but since I speak the language of cats fluently, the image that comes to mind is of me, clad in a sweater, and each day Kitty comes with claw outstretched to pluck and pick loose still another thread, then another, until eventually the whole garment begins to unravel.

My malfunctioning epiglottis is the latest casualty. It’s likely a long-term side effect of the radiation treatment I had two years ago, during my second recurrence. Yesterday I underwent a swallowing study (you haven’t lived until you’ve chewed a spoonful of cold beef stew, mixed with a dollop of barium, and swallowed it on camera) that showed the strap muscles in my neck are weak. I’ll need speech therapy and a set of exercises to strengthen them and get my epiglottis moving again. I was disheartened to learn I had yet another issue that needed addressing; I’d thought the swallowing study was meant to confirm and illuminate the issues with my paralyzed vocal cord. Surprise!

There’s a popular inspirational meme/poster that circulates titled “What Cancer Cannot Do.” The wording varies slightly, depending on the source, but all versions iterate the limitations of cancer, noting that it cannot cripple love, shatter hope, corrode faith, destroy peace, kill friendship, suppress memories, silence courage, invade the soul, steal eternal life, or conquer the spirit.

All pink and pretty, with flowers, too…right.

I’ve gotta confess, I have increasingly mixed feelings about this message.

Attitude may well be half the battle when it comes to fighting cancer. But that’s just it: attitude is half the battle. Battles are hard. And it’s something less than easy to stay on a steady, even keel mentally and emotionally when your body is in the fight of its life, especially when it keeps throwing you yet another left hook. Or a recalcitrant epiglottis. It’s unrealistic to expect of myself, yet I often feel like I’m letting people down if I don’t “stay positive.” Someone complimented me recently for my lack of self-pity, which left me wondering where the line is between descending into said self-pity and just being transparent about the realities of this disease. I’ve no desire to wallow, but acting as if there’s no muck to slog through would be dishonest.

Do I sound cranky? I feel cranky. I’m weary, and I’ve been struggling. So when I read about all the things cancer cannot do, it makes me twitchy. Maybe cancer cannot cripple love, but it can sure wreck your libido. It might not destroy your peace of mind, but knowing some of your own cells mutated and tried to kill you certainly disrupts it. And anyone who’s undergone chemotherapy can tell you that cancer may not suppress memories, but the treatment robs you of your ability to recall events and words most effectively.

Your brain on chemo… Image source https://www.cedars-sinai.org/blog/chemo-brain.html

Maybe it’s my inner English teacher, the wordsmith in me who demands precision of language, who trips over the “cannot.” If cancer has not conquered my spirit, it isn’t because it can’t. Lately, depression and anxiety have interrupted my days as much as the physical symptoms and side effects. If my spirit remains unconquered, it’s because I fight, hard, on that front, too. I talk regularly to a counselor, and I take medicine to help me manage the emotional fallout.

The meme borders on reinforcing toxic positivity, a form of “staying positive” that denies another’s grief or pain, that seeks to leap-frog over losses to the lessons those losses may have wrought. According to Susan David, author of Emotional Agility, “Toxic positivity is forced, false positivity. It may sound innocuous on the surface, but when you share something difficult with someone, and they insist that you turn it into a positive, what they’re really saying is, My comfort is more important than your reality.” You can only see the silver lining if you first acknowledge the cloud. And sometimes the fog that surrounds you is thick.

Image source https://upload.wikimedia.org/wikipedia/commons/9/98/TreesInTheFog.jpg

Cancer, and its treatment, does damage, and I grieve my losses. A partial list, in no particular order: all of my hairs, including eyelashes and brows, and all of their functions, including the facial expressiveness eyebrows provide; my voice, and thus my ability to sing along with my favorite songs; my ability to swallow with ease and thus my enjoyment of food; the strength and mobility in my left arm and dexterity in my left hand; the ability to fit into some favorite clothes due to the swelling in my upper arm; my natural breasts; all sensation in my chest; my ability to recall words; wide swaths of memory; executive functioning skills (good-bye, multi-tasking, and hello, increased difficulty making decisions); my stamina, and thus my ability to hike or run; my dignity on occasion (drippy nose and loud belches will do that for you); the ability to wear my long-awaited wedding ring (due to swelling) or most any other jewelry except earrings comfortably; general comfort and confidence in my body; easy imaginings of a long-term future for myself, my marriage, and my dreams.

There have of course been lessons, and I acknowledge those, too. I’ve definitely no shortage of writing material, though I will always hold that I had plenty BC (Before Cancer). A changed perspective and sense of priorities, in terms of what deserves my energy and time. Patience. A strong desire to be a positive force in others’ lives, whether that means telling my loved ones I care, giving more compliments, sending someone a note or gift to brighten their day, or just trying to be the person about whom the doctor’s scheduler goes home and says to their partner, “I spoke to the nicest woman today.” Keeping petty grievances to myself, and speaking up for justice. Always seeking the beauty. Letting the small stuff go. Increased awareness of my own resilience. Understanding just how much I am loved, and how lucky I am to have the family and friendships I do. Recognition that way more people are going through hard stuff than most of us would ever imagine. Kindness always matters.

Another lesson: the rejuvenating power of a good nap!

I would like to think I didn’t need to face a serious illness to learn these lessons, but it certainly has had a way of highlighting them. I value what I’ve learned, but I also have to be allowed to mourn my losses. They are real, and they hurt.

There will be losses, and there will be lessons. And I thank you, readers, for the third “L,” an act far more meaningful than the platitudes of any inspirational meme: listening.

Rest Up

November 22, 2016November 23, 2016Sandee McGlaun

I’m tired of resting.

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

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.

There’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.

I’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

September 23, 2016September 25, 2016Sandee McGlaun

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.

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.

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.

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.

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