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?
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.
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.
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!
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.
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.
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.”
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.
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.
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.
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!
I’m a few days behind my normal posting schedule this week. I got the second dose of my new treatment regimen on Wednesday, and while the side effects are milder than the previous infusion, I still spent a couple of days feeling less than awesome. But things keep rolling along, as they do. A few updates:
It’s been about six weeks since I got the injection of Restylane in my left vocal cord. It definitely strengthened my voice, which is nice. It also seems to have triggered a tickle that sometimes makes it hard to talk without coughing. That irritation comes and goes, but it is nice not to feel like I sound like a Muppet all the time.
I’m still undergoing swallowing therapy, and I had another endoscopy and dilation. The consensus is that lymphatic fluid build-up and fibrotic tissue in my chest and neck are contributing to both issues. My doctors are concerned that I’m not managing to squeeze enough nutrition through my restricted esophagus, and the gastroenterologist doesn’t want to keep dilating me only to have external pressure narrow things again. So on Tuesday they’re going to place an esophageal stent, to remain for four to six weeks. I’m a bit anxious about it, but I do need to eat more, so I hope it will help and not be too uncomfortable.
Meanwhile, my left arm is currently mummified, wrapped in a multi-layer compression wrap my lymphedema therapist recommended and showed me how to do. I’ll continue that for about two weeks. It seems to be helping, softening the fibrosis in my arm and moving some of the fluid. Hooray! Sadly, now I’ve got some additional fluid backup in my neck, so I’m trying to stay on top of that with manual lymphatic drainage massage. Some days it feels like I’m playing Whac-a-mole.
I seem to be growing some hair back! My oncologist thinks I may lose it again, but we’ll see; it didn’t fall out the first time I received the two chemo drugs I’m on now. I have a fuzzy old man’s head at present.
My new regimen consists of two chemo agents, carboplatin and gemcitabine, and an immunotherapy drug, pembrolizumab. I’ll receive four rounds total of that cocktail, each three weeks apart, and then undergo a scan, with hopes that we can then move to an immunotherapy-only infusion. Despite the side effects, my body does feel like it has an ally on board. It’s hard to explain, but the pain I was experiencing has lessened, so I’m hopeful the drugs are in there kicking some cancer butt.
I don’t really have any philosophical musings to offer today, for whatever they are worth. I’m going to sit on the porch, drink some tea, and call my dad. And at some point, with hubby Steve’s help, de-mummify and then re-mummify my arm. Wishing you a good wrap-up (hee-hee) to your weekend.
My dear friend Sara is visiting this weekend, so I’m focusing on enjoying her company. We first met in 1993, shortly after we’d each graduated from our respective colleges. For many years we were able to meet up at least once a year for a visit–we took the photo we’re holding below during an outing to Six Flags over Georgia in the early to mid-nineties. But it’s been a while, so there’s much to catch up on! We’re taking advantage of our vaccines and renewing our tradition.
I’ll be back next week with a longer post. For now, I’m going to focus on recalling old memories and making new ones, and sharing lots of laughs. Cheers until then!
We need to talk about death. Not mine, which isn’t imminent, as far as I know. But generally, as a society, we’re really bad at talking about death, which is a bit ironic, given that it’s the great common denominator, the only certainty.
Are you uncomfortable, reading this, hearing a cancer patient raise the specter of death? Is your first impulse to want to reassure me, change the topic, tell me I’m going to beat this and it’s not something I need to worry about? If that’s your initial response, I urge you to pause and take a deep breath. And not so much for my sake, but for the sake of all the cancer patients you might encounter in your life. Because I can almost guarantee that anyone who’s ever had a cancer diagnosis, of any kind, has confronted thoughts and feelings about death. The word “cancer” has a way of foregrounding one’s mortality, even if the diagnosis isn’t immediately life-threatening. And you don’t do anyone who’s in that space any favors by shutting down the conversation with well-intentioned reassurances, however unlikely death may seem or how uncomfortable the subject makes you. People need space to be with, and share, their thoughts and feelings about death. It does, finally, come for us all.
I have three specific fears about death. First, I worry about the pain my death will cause the people and creatures who love me. It makes me especially salty at the universe that my husband Steve, who lost his first wife to MS, might have to face losing a spouse a second time. Neither he nor my stepsons should have to go through that. I worry about the impact my early death might have on my parents, and my brother’s family. My friends. My cats, who I’m afraid would be confused were I suddenly absent. I’ve always been a pleaser, and I really don’t like the idea of being the source of hurt and grief for anyone.
I also fear experiencing physical pain. Cancer isn’t known for being a fast, painless way to go, so if that’s what takes me, I can only say I hope I have access to lots of good drugs.
My third fear is that I’ll depart this earth with dreams unrealized. I really would like to get my act together to turn all this writing I do into a book. I’d like the gift of holding a book with my name on it in my hands before I die. You’d think that would mean I was working diligently toward that goal every day, but focus and energy aren’t always easy to come by. And the other thing that’s kept me from realizing that dream all these years–fear of failure–hasn’t magically disappeared with my diagnosis. So I’m still working on it.
I suspect my fears are fairly common ones, shared by many.
I’m not sure if I fear death itself. I know many people are comforted by specific beliefs and visions of an afterlife, but if I’m completely honest with myself, the only thing I can say truthfully is that I don’t know what happens when we die. I know that matter never disappears, only changes form, and so the energy that is me will continue on in some form. Is that a soul? I don’t know. Is there another plane I will remove to and keep my awareness of self and my identity as an individual? I don’t know. I’m not sure I’m even attached to the idea of maintaining a singular identity after death. Maybe it’s more like what The Cryptonaturalist on Facebook describes in a recent post: “We could name each individual raindrop and then mourn its loss when it reaches the sea, but we understand that the water was neither lost nor diminished by rejoining the vastness from which it came.”
Don’t get me wrong. Mourning someone’s death is natural and necessary. And it makes me sad to think about the prospect of leaving the people I care about, to contemplate a world without me in it. While I don’t like the idea of being the source of anyone’s grief, I hope I’ve had enough positive impact in my small circles to think such a world would be at least a little bit diminished by my absence. But an exit is inevitable.
I do like the idea of an afterlife in which I would get to see my beloved Roscoe kitty again. And Tiko, Eliza Jane, Bliss, Lola, and Imoh, not to mention the cats and dogs of my youth. That indeed sounds heavenly. In recent years I’ve thought a lot about reincarnation. Something about the concept makes sense to me. Sometimes I think there are a certain number of souls in the universe, and they reincarnate to inhabit different physical beings through those beings’ lifetimes–but there are more physical beings than souls, so not every human or creature has a soul. That would explain why my cats have always seemed deeply soulful beings, while some of the humans I’ve encountered act soulless and cruel.
If someone you know has cancer–terminal or not–and they raise the subject of death or dying, please: let them talk, and really listen. Needing or wanting to talk about death does not mean that someone is assuming they’ll die soon, that they want to die, or that they’ve given up. It means they have complicated thoughts and feelings they want to process. It means they recognize that death is part of life. It means they trust you enough to be vulnerable with you. Stifling the conversation does not stifle their fears or concerns; it tells them you cannot or will not be fully available to support them when they’re wrangling with the big questions.
It shouldn’t be awkward or uncomfortable for any of us to talk about death. The unknown is scary–it scares me. But the best way I know to manage a fear is to face it. And that’s always easier when someone you care about is standing by your side.
During our recent trip to the beach, I found myself more than once getting caught up in comparative thinking. We had a lovely visit to Ocracoke Island, where we stayed in a house we particularly like for its large screened porch that overlooks the marsh across the road. Granted, the first week was chilly, with one full day given over to rain. But we added layers and walked on the beach anyway, and by the start of our second week, the wind had largely calmed, the weather warmed. We spent a couple of days parked under our sunshade, reading and relaxing with toes in the sand. I found several kinds of seashells I’d not found before, and we explored the beach at the northern tip of the island, which was new to us. We took in three gorgeous sunsets over the sound, ordered takeout from some of our favorite restaurants, spent an afternoon visiting our favorite shops and galleries, and napped generously.
Sounds wonderful, yes? It was, taken on its own terms. But it was hard not to compare this trip to previous ones. I missed being able to walk for miles on the beach without it utterly exhausting me. I missed wearing some of my favorite beach clothes that no longer fit over my swollen arm, and having the strength and mobility to kayak in the sound. I missed being able to fully enjoy the island restaurants’ delicious food because of my swallowing issues. Some of the losses are the result of the pandemic–we used to enjoy getting dressed up and going out to dinner, but we felt like that was still too risky. And some of the activities we’ve participated in, like the annual Fireman’s Ball and local ghost tours, were cancelled or discontinued because of covid.
“Comparisons are odious”–the phrase, according to the Oxford English Dictionary, has been in use since the mid-15th century, and has appeared in works by Cervantes, Christopher Marlowe, and John Donne. “Comparison is the thief of joy,” ascribed to Theodore Roosevelt, is another aphorism that cautions us against making comparisons. Yet research by social psychologists Summerville and Roese found that “more than 10% of daily thoughts involved making a comparison of some kind.”
Though it’s hard not to think back wistfully on good times–and I think necessary and important to grieve those losses–dwelling on previous trips robs the most recent of some of its joy. I grow envious of my past, more innocent self, the self who trusted her body, who took her basic health for granted, who never could have imagined an entire globe held in thrall to a virus. Lately I’ve also found myself more and more envious of people who (appear to) have their health, posting photos of themselves on social media hiking, running, working out. Do they know what a gift it is? Those who are casual about covid make me wonder. Of course, regardless of how active and healthy someone may appear online or elsewhere, I can’t really know what’s going on in their life unless they confide in me directly and intimately.
Which is why comparisons are odious, even dangerous. I’ve written before about what I call “diagnosis envy,” something I have experienced more than once. You hear about someone else’s diagnosis, and think, If I had to have breast cancer, why couldn’t mine have been a stage-1 tumor that only required a lumpectomy? Or, why couldn’t I have been diagnosed with something with a lower incidence of recurrence? There are some objective measures that might make one diagnosis “better” than another. Some cancers, like breast cancer, have more research dollars behind them and near-constant innovations in treatment. I myself have benefited from that. Most patients would, I imagine, prefer to be diagnosed with a cancer that can be cured, rather than only treated and managed. Some types of cancer, statistically, are deadlier than others.
But a “better” diagnosis doesn’t necessarily equate to an easier journey. The type and stage of cancer and the treatment options are only two factors that affect a patient’s experience. Someone without insurance or sufficient financial means to pay for treatment will endure additional stress, perhaps even bankruptcy. Many people have a limited or non-existent support network. Even proximity to treatment centers makes a difference–we only have to drive five minutes each way, whereas many patients commute two hours or more for each appointment. Knowing someone’s diagnosis doesn’t give me a full picture of what they are going through, so diagnosis envy is unhelpful.
I was taken aback recently upon reading a social media post made by the parent of a teen survivor of brain cancer. Though the overall intent was good–to raise awareness about how life-saving interventions like radiation can have their own devastating consequences–one statement stopped me cold: “We’re talking about the brain here, folks…it’s not a bone or fat tissue.” The writer goes on to say that other cancers “can be” “devastating,” but the initial comparison is, well, odious. I know someone who lost her teenage son to bone cancer. And while I’m not certain as to whether “fat tissue” was meant to include breasts (breast cancer grows in ducts or lobes, not “fat”), I’ve witnessed too many women struggle with this disease to be comfortable hearing its challenges dismissed. I haven’t had brain cancer, or received treatment for it, so I won’t argue that it isn’t worse than what I’ve gone through–I don’t know. Nor do I know what it is like to endure cancer as a child. I can say this: neither suffering, nor dreams for the future, know an age.
No one wants to play in the suffering olympics, and god knows, no one wants to win. Comparisons are helpful only if they lead to greater compassion and empathy. I’m happier when I’m able to focus on the beauty that is now, and I believe it is always better to assume others need my kindness. After all, as Ram Dass says, we’re all just walking each other home.
Steve and I are wrapping up our time on Ocracoke Island. It’s been a good visit, a nice change of pace and place. Sun, sand, sea, and shells are always healing. It’s been a challenging visit in some ways, too, but that’s another post for another day. Today, some other news is foremost on my mind.
We’ve known for several weeks now, based on changes happening in my body, that Sasquatch is no longer working as well as it needs to. They call it “breaking through” when the cancer stops responding to a drug, and unfortunately, the rogue cells have broken through. That’s the bad news.
The good news is that we got the results back from a test to explore the likely effectiveness of an immunotherapy drug, and it looks really promising. A score of 10 or higher is considered good, and I scored over 50. So I’ll be starting a new treatment protocol with a combination of immunotherapy and chemotherapy next week. The original plan was to begin Monday at 8 am, but we’re still waiting on insurance authorization. Don’t ask me how I feel about insurance companies’ ability to interfere with treatment plans right now. The plan is to start as soon as we possibly can.
It’s a bit disconcerting to have Trodelvy stop working. But I keep thinking about, of all things, a caving trip I went on with my church youth group in the eighth grade. I was a little anxious that I’d experience claustrophobia, as I wasn’t fond of small spaces. But what I found was this: I was completely fine crawling, wriggling, and squeezing through the narrowest of passages, as long as I could see a way forward. The only time I panicked was when I came around a corner and the passageway appeared to dead-end in front of me. It was an optical illusion–the passage simply made a hard left, which I realized when I heard voices ahead and saw a brief flash of light from a headlamp. I made the turn, and I was back on track.
I realize there may come a time when we will have exhausted the alternatives, and I dread that possibility. But for now there is a way forward, so I’ll keep on pushing through the tight places. In the meantime, Steve and I are going to watch another sunset over the sound and look forward to cuddling our kitties again tomorrow evening. Onward!
Steve and I are on Ocracoke Island this week, one of the most beautiful beaches in the Outer Banks. It’s been a bit chilly, with stiff shore winds, so we’ve mostly been visiting the beach in short stints, clothed in long pants and jackets, walking rather than parking our chairs and hanging out for the day. I hope we’ll get some warmer temps soon, so we can lounge and linger.
The weather hasn’t really slowed my efforts at shell collecting. Despite the reservoirs of shells I have at home, gathered on previous beach trips, I am always on the hunt for the next treasure. When we were last here in September, it seemed like there were fewer whole shells to be found than in previous years, and some once common finds, like olives, were absent. I’d hoped that was a factor of fall ocean currents, but I’ve yet to see even a fragment of an olive on this trip. And once again, broken shells are abundant, intact finds fewer and farther between.
It’s tempting to see it as some kind of metaphor–my body, too, has felt a bit more broken with each visit. But I hope my ego isn’t so encompassing that I can only see the world as a reflection of my own state of being! The whole world has been muddling along this year, not just me. If there’s a metaphorical resonance in the limited numbers of good shell finds, perhaps it’s in the ways all of our experiential spheres have shrunk in the course of the pandemic.
It is interesting to think about how my approach to shelling has shifted over the years. When I was young, I was less discerning; I was also more impressed by ostentatious beauty. As I’ve grown older, I’ve gained a broader knowledge base. I know what I’m looking for; I appreciate novelty, but I also take pleasure in seeing and naming the familiar. I have greater appreciation for small beauties and subtle, intricate patterns, even as my eyes aren’t as sharp as they once were.
My mother recently made me a beautiful journal that declares “My birthstone is a seashell.” Sometimes it certainly feels that way. I don’t think I’ll ever tire of wandering the shoreline in search of treasure. There’s always beauty to be found, if we only look for it.
It’s not the first time. I’ve done the gain-5-10-15-pounds-and-lose-it-again thing several times, usually on the timeline of gaining in winter, losing over summer. I tend to gain around my belly and hips, so the springtime closet changeover often means pants and shorts are too tight, tops mostly okay.
This year’s reckoning has been a bit different.
It was precipitated by packing for a beach trip, typically a joyful enterprise. I adore the beach. The month I spent living on Sanibel Island, Florida, some ten years ago counts as one of the highlights of my life, and Steve promised in the wedding vows he wrote to deliver me to sun and sand at least once a year. Those who know me well know I love the beach as much or more than I love, well, my clothes. So it shouldn’t be a surprise that over the years I’ve amassed a small beach wardrobe. It includes bathing suits, of course, but other pieces too: a green vintage wrap skirt appliqued with a glass of lemonade I bought in a thrift store on Sanibel. A turquoise ombre silk tunic top with delicate embroidery that makes me think of ocean waters. A teal cotton polka-dot button down from Target I like to tie over a bikini top in the same color. Some of my beachy items have sentimental value, like the mint pleated dress Steve bought me an hour before he proposed–probably largely to get me out of the store and walking on the beach so he -could- propose. And then there’s the pink halter dress I bought on my first solo trip to Ocracoke that’s traveled with me on every beach trip since.
Discovering that a number of these pieces don’t work with my new body has been hard.
It’s not simply a matter of weight. With all my swallowing issues, I’ve actually lost weight overall, and my pants, for once, are if anything too big. The challenges are my swollen left arm, discoloration and disfigurement of my neck, chest, and shoulder, and the ulcerated patch of skin above my left breast. My sausage arm simply doesn’t fit into the sleeves of some of my faves, so that’s a complete dealbreaker. And anything with much of a v-neck either calls attention to the redness and lumpiness of my skin, or reveals my port on the right and/or the scabby ick on the left. I know I could still wear those pieces, but I feel exposed in them, and I don’t like seeing other people’s pity or discomfort when they look at me. More than that, I dislike seeing those markers of illness myself when I look in the mirror, and it’s hard to feel pretty and confident when they’re on display.
So it’s been depressing, realizing I have to part with some of my beach favorites. It’s also sobering to realize how much my body has changed since September 2020, our last trip to the shore.
And that’s where the real reckoning is, of course. It’s never really about the wardrobe, is it? It’s about our relationships to our bodies, our feelings about them, our acceptance of or resistance to their changes. For me, that process is ongoing. I keep hoping my arm will shrink down at least a little, that my skin will heal. Things might improve some, but I know my body will never be the same as it was before cancer, before surgery, before chemo and radiation. That’s hard to accept.
I know it doesn’t help, regularly looking in my closet and feeling sad about the things I can’t wear. So maybe I’ll take this as an opportunity to weed out anything that doesn’t make me feel fabulous. I’m learning the shapes and styles that do flatter my new body, and I have one new dress that–even with a v-neck–makes me feel smashing.
And, I suppose, I now have an excuse to go shopping. Steve will be thrilled. 🙂