Things I Wonder

There are many things I wonder about.

Who would I be, if I hadn’t gotten cancer? Has my fight with this disease fundamentally changed who I am, for better or worse? Would I be less compassionate, more complacent, had I not faced serious health challenges? Would I be quicker to judge, more impatient with my own and others’ foibles?

What would my marriage have been like without these early and constant trials? Have they brought Steve and me closer than we would be otherwise? Would we appreciate each other less, or more? What would it be like to be simply partners, without the added caregiver dynamics?

So well-matched we gave each other matching games for Christmas!

My mother, in response to my confession that I sometimes feel ugly, physically deformed by the changes the disease has wrought in my body, reassured me that I was still the same person on the inside, where it mattered. But am I? I don’t feel like the same person. Physically, my body is slower, of course. My brain is, too. I am more content to be, rather than always do. I’m less of a perfectionist, which has opened up new avenues to explore my art. I sometimes actually feel I see the world in a different way, as if access to the visual has overtaken the verbal.

I was always emotional, but I think I’ve progressed to moody. Broody. Cranky with pain sometimes. And there are several identities I’ve held in the past that no longer apply. I’m a foodie in spirit only now. Not much of a wine drinker anymore. No longer the one who pulls other people onto the dance floor, or the professor whose courses incorporate hikes. I used to be more of an adventurer. I’d take myself to a park, paddle around the lake. I was a marathon shopper.

Rafting with Nature Writing students, back in the day

Some of those identities were shifting, anyway. But one of the tough things about a serious illness is the way it whittles down your world in ways you didn’t anticipate. Whether you want it to or not, it changes you.

I’m still a crazy cat lady. I still write and create. I still cherish being a wife, a friend, a stepmom, a daughter, a sister. I like to think I’ve gained some valuable insights about myself and who I want to be. But I do miss some of those lost puzzle pieces. Like everyone else, I’ll just have to do the best I can to create a beautiful picture from the ones I’ve got.

I’ll always love cats!

Friends, I have a request. I’ve got another week coming where I have a medical appointment almost every day. Will you do me the honor of embracing something you love or enjoy each day, and really savoring it? Whether it’s eating a fave food, or listening to your favorite music, or calling a friend you treasure–anything. And send me some of the good vibes and joy you feel while you’re doing it. My thanks!

Holding On to Dignity

It’s challenging to retain one’s sense of dignity while standing in an exam room naked, wrapped only in a crinkly paper hospital gown that doesn’t quite close in the back. It also feels rather undignified to have an esophageal spasm sneak up on me at the dinner table and erupt with a noise something between a belch and a heave. Illness has a way of exposing us–sometimes literally–in profoundly humbling ways.

How dignified can you feel in this get-up?

But what does it mean to possess dignity, or to be dignified (or, conversely, undignified)? To my ear the noun and the adjective have slightly different connotations. I think of “dignity” as an aspect or feature of a person’s character, a personal attribute or identity trait, whereas “dignified” is descriptive of a particular action or behavior–acting in a way generally deemed appropriate to the context or situation. (Thus a person could be possessed of an essential dignity while occasionally behaving in an undignified manner.)

But both words, I think, call up the image of a kind of stoicism or reserve, someone a little outside of it all, above the fray. Dignity is something we attribute to someone who maintains control, keeps calm in even the most trying or tragic of circumstances– the parent who’s lost a child but is able to deliver an eloquent speech, for example, without dissolving into tears. To be undignified, on the other hand, is to be out of control, to react in an outsized manner–the athlete who throws a racket in a fit of pique, the drunk partygoer who turns loud and rude.

When I think of dignity, I think of Queen Elizabeth—keep calm and carry on!

But what’s the cost of associating dignity and dignified behavior with a stiff upper lip, repressed emotion, an invulnerable facade? Especially for someone who is robbed of control–perhaps even autonomy–by illness or other circumstances derived not from their own choices? Why should it be undignified to cry if it hurts, to curse at the bloody unfairness of it all? We shouldn’t have to suppress essential elements of what makes us human to feel our own sense of, or be seen as having, dignity.

When I asked hubby Steve how he would define dignity, he answered “recognition of value.” His definition echoes the word’s etymology, which indicates it descends from concepts connected to “worth.”

Playfulness has its own dignity, I think

I will never be comfortable making impolite noises in the company of others. But I know that my inability to control them is not a measure of my worth. And if I cry sometimes, I hope that I am all the more human and none the less dignified for my honesty. Let’s normalize a sense of dignity that embraces the full human, rather than valorizing our ability to partition off our emotions. There is value–and dignity–in all that makes us who we are.


Sometimes in the moments after I first wake, whether from a nap or a night’s sleep, before I shift or move any body parts, I feel almost normal. I’m not yet reminded that my achy left arm doesn’t always respond to my brain’s commands, or that the inflamed, tightened skin across my chest makes me feel like I can’t get a deep breath. I haven’t yet tried to turn my head against the pull of fibrotic tissue in my neck and shoulder, or begun to putter around on legs weakened by loss of muscle tone. For a few blissful seconds, none of this cancer crap ever happened, I feel healthy and strong, and I’m gonna get at this day and make it all mine.

Of course, I do eventually have to get out of bed.

If I could only lounge all day like Charlie…

You may have noticed that I skipped posting last week. I don’t like to be a Debbie Downer, and frankly things have been kind of tough lately. I don’t want to whine, so I’m shooting for a brief, honest update, and maybe by next week I’ll have reverted to my default optimist setting.

So, I had the esophageal stent placed. That went fine and seems to be helping, though I still have a small appetite and can only eat small amounts of food in a sitting. The doctor showed me the images of my squeezed esophagus, and it was shocking. He also drew a picture (see below). See that narrow bit below the dark scribble about the width of yarn? That was my esophagus before the stent. I totally understand now why I’d been having so much trouble eating, and why he was throwing around the possibility of a feeding tube. It’s a miracle anything was getting through.

My squished esophagus

So that was sobering. Two days later I had to go back to the hospital for a port study and possible replacement. My port is working fine, it turns out; there’s just this odd open spot in the skin over it that won’t close. All were in agreement that making more cuts into that skin would likely only exacerbate the problem. So I got stuck for two IVs that day, but thankfully no surgery.

I came out of that week feeling super puny, as I had to fast the days of both procedures, and I wasn’t exactly the queen of nutritious intake going in. So I’m still trying to regain strength and stamina, as well as conquer a nagging cough that is likely being triggered by some nerve damage in my vocal cords. I’m still having to grind up every pill I take, or suffer through the liquid form (how hard would it be to make medicine that at least tastes not-vile?) Some good news: the Restylane injection in my left vocal cord seems to holding up well.

Silly kitties

I’ve been blue, struggling with all this, and while I’m all for honesty, I don’t really like to burden others with my troubles. I will say hubby Steve has been an absolute rock through it all, and he deserves all the huzzahs! And I don’t know what I would do without the constant joy and affection of our feline crew. I know I have many kind people rooting for me too, and for that I am ever so grateful.

Even with all the aches and pains, I’m still glad to be able to get up each day. Next week I’ll receive dose 3 of the new regimen. Wishing you a fun and safe holiday weekend!