"PERCHANCE he for whom this bell tolls may be so ill, as that he knows not it tolls for him..."
- the first line of Meditation XVII by John Donne, 1572-1631 (taken somewhat out of context)
Yesterday marked a milestone in what has been my mother's year of cancer.
Mom was able to return to her "cancer place" as something other than a cancer patient. Her "cancer place" is the clinic here in town housing her oncologist's offices, plus various treatment facilities for fighting that dreaded disease. She returned not for treatment, but merely to have her port flushed. And no, we're not talking "port" in nautical terms, but rather the cap they installed in her chest into which her chemo cocktails were administered.
Afterwards, her nurses invited her to ring a little blue bell mounted on a wall in their sprawling infusion hall. So yes, I guess this does have something of a nautical association after all. Ringing a bell upon the completion of a cancer patients' treatments has become a popular tradition at many cancer centers. Ostensibly it began at Houston's famed MD Anderson Hospital after a Navy admiral finished his cancer treatments and wanted to commemorate the feat like military mariners often do: By ringing a bell. Considering the arduous journey most cancer care is, survivors find partying with a clanging bell therapeutic.
When we learned a month ago they wanted to schedule Mom for her bell-ringing, I wasn't sure she'd actually go through with it. My quiet mother usually eschews public attention, and initially expressed ambivalence about it. However, when a nurse escorted her over to the bell, Mom heartily laughed out loud - something she rarely does - and clanged away as that distinctive noise bounced about the large room where other cancer patients were still receiving their treatments.
This has been my first participation in a close loved one's cancer journey. Compared to some of the horror stories we've heard from other patients, Mom's experience has been relatively short, relatively comfortable, and yes, heartwarmingly successful. First of all, she didn't die. Second of all, her treatment series was six two-day sessions 21 days apart. That was a lot for us, but we met one patient who's been getting infusions once a month for the past 15 years. I heard of another with over 20 years' tenure.
Mom's oncologist recently told us that when he first met her, he didn't know if she'd make it. She could barely walk at the time; I had to maneuver her through the two-story clinic in a wheelchair. She was weak, frail, thin - and that was before she ended up spending 13 days in a local hospital's oncology ward while they prepped her for - and then administered - her first two-day round of chemo.
Mom's health began sliding this past winter. At first, we figured her dramatic weight loss and funky appetite were caused by her trying to avoid a diabetes diagnosis. She'd been dodging that diagnosis for years, and had finally decided to give up all of her comfort foods in one last-ditch effort to bring her numbers down.
Still, she was losing remarkable amounts of weight. She was increasingly weak, her belly sometimes had a weird feeling in it, and long-favored foods were oddly losing their appeal. She began falling, and I was helping her do just about everything.
Her primary care doctor is not one for drama, so we knew he was worried when he ordered a stiff round of labs, a CAT scan, and a PET scan. He also consulted with a slew of specialists.
Our first meeting with her oncologist held few surprises. We'd already guessed she had some sort of cancer, and he confirmed it was one of approximately 40 types of lymphoma. Stage three, and quite aggressive. He gave its scientific name but immediately said he wouldn't repeat it because he didn't want me Googling it later and freaking out.
My sister-in-law and brother took it upon themselves to fly all of Mom's grandkids, their spouses, and their kids down here from across the country for an impromptu visit, complete with rental cars and a large AirBNB. Nobody verbalized it, but we all pretty much assumed the same thing about the purpose of it all.
A week later, Mom couldn't eat or get out of bed. I called her oncologist's nurse and he suggested I take her to the ER. When I was helping her out of our living room into our garage, Mom later told me she figured it was for the very last time.
But it wasn't. Her hospital stay proved arduous, but when she came home, she did so with her first chemo treatment under her belt, and it had gone remarkably well. No nausea, no pain, and thankfully, that pattern stayed true through all of her chemo. Her oncologist and nurses were impressed, especially considering her condition when she was admitted.
There has been no radiation, and no surgery. But there have been side effects, the worst of which continue to be "chemo brain", significant atrophy in her legs, more balance issues, and some neuropathy in her hands. She also lost her hair, which discouraged Mom more than she thought it would.
Obviously, it was a huge emotional relief when her chemo came to an end. After two further infusions of immunotherapy, her oncologist burst into her exam room with the triumphal announcement that she was officially in remission. Visibly relieved himself, he congratulated Mom for somehow summoning from within herself the will to beat her cancer.
Mom immediately corrected him. "I'm a very weak person physically and emotionally, and I didn't have any willpower or strength. But God used you and the hospital and the nurses to beat that cancer, and I'm very grateful."
Not that Mom's journey is over. She's now on a conventional schedule of checkups for the rest of her life. There is a lagging minor issue her oncologist thinks a colonoscopy will resolve, but otherwise Mom was fully eligible for that informal bell ceremony. And she enjoyed it.
I have to admit that despite Mom's uncharacteristic glee, the cynic in me couldn't help but wonder how other people in that bright, clean, but relatively cheer-less hall received the event. A patient near me even asked how many treatments Mom had received, and then groused that his own treatments have lasted far longer. Turns out, this one little celebratory thing has become somewhat controversial among oncology patients and professionals.
As I researched the history of oncology bell-ringing, since I'd never heard of it before, I discovered that some mental health experts now oppose it. They claim that terminal cancer patients, or patients who know they'll need treatments for the rest of their lives, may resent hearing the clanging bell as it's rung by people who are in remission.
Of course, those who describe the bell-ringing event as discouraging won't admit they're really talking about jealousy. And you know what? I get that. I'm going ahead and calling it jealousy, but I'm also acknowledging that there's a valid reason emotions are brittle. Even in my limited encounter with it, I have a greater respect for how awful cancer is. I've seen the emaciated folks - of all ages - schlepping through that infusion hall with hollow eyes, gaunt faces, practically no hair, and even less energy. I've seen the arms black-and-blue from incessant needle pricks, patients wincing in pain at each one, and that included Mom when she was in the hospital. They depleted her veins to such a degree two nurses finally had to bring in an ultrasound to find one that wouldn't collapse.
It's not necessarily a profanity: "Cancer sucks". It sucks so much out of its victims, including money, time, energy, patience, emotional stability - and health. It is utterly heinous.
And on the one hand, it's understandable when its victims - and yes, I'm transitioning from "patient" to "victim" - feel scornful of others who get to beat it. That is a genuine human reaction, and to deny it probably does little good in the long run.
However, here's the thing: Life isn't "fair". What is "fair", anyway? Some people never get cancer. How fair is that? Some people go into remission after cancer treatments, some people won't recover from their cancer, and we even had a fortysomething neighbor who died not from her cancer, but from her cancer treatments. None of it is fair.
Yes, people do emerge successfully from the other side of that dreaded diagnosis. And it's a hard, hard slog from beginning to end. So when victories come, can't they be celebrated? Sure, you may feel like total crap, propped up in that industrial recliner in a room full of other cancer victims, stuff dripping into your body that is literally lethal. But should folks be left to dissolve into sour, dour Scrooges to the point of begrudging somebody else a hard-won victory chime?
While it's completely understandable when cancer victims hit the bottom of their emotional barrel, I'm pretty sure wallowing in it isn't helpful for them.
We'd all like some sort of hope, even if it might seem too little too late.
And we all need some sort of grace, both giving and receiving, especially when our journey gets impossibly dark. Even if we might not receive the measure of grace we'd like, or in the form we'd like. Sometimes really bad things happen to some of the most unlikely or "undeserving" people. Life isn't fair, remember? But then again, sometimes really good stuff happens to equally unlikely or undeserving people. Is that fair?
Most of us don't particularly enjoy the negatives, but how many of us enjoy being begrudged the positives?
When Mom rang that bell, she was being uncharacteristically loud. And the nurses who gathered around her were genuinely moved. One of them softly wept, and Mom began to as well. Which begs another question: To what extent might this bell-ringing tradition be needed not just by patients, but by their nurses?
During her treatments, Mom and I only ever witnessed one other patient ring that bell. Turns out, she rang it for the third time in her life, since she'd just finished treatments for her third battle with a third cancer. Yet she wasn't morose about having to go through three bouts of cancer. As she was receiving her final infusion, sitting across from Mom, she told us all about them, and about how she's going to be on various types of maintenance for the rest of her life, since any of them could come back at any time. But she was going to ring that bell for the third time anyway, and she was going to relish doing so.
She doesn't know what her future holds. But then, none of us do. So what's the harm in celebrating victories along the way, even though they might not pertain to our own personal reality?
And when our lot in life isn't as rosy as somebody else's, at least for myself, I don't think I want to begrudge others the successes they experience that I don't. Otherwise, what would that say about me? I know with my chronic clinical depression, my personal default is to wallow in self-pity. But is our humanity expressed productively when we wallow, or when we're gracious?
Whether we're going to get to ring a proverbial bell or not.
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