Patron Saint of the Plague

Had I known St. Valentine encompassed anything but Hallmark love, I may not have chosen February 15 as our wedding day. Not only did it land at the end of reading week (I was a student at the time, writing mid-terms and papers), but I expected proximity to be a good thing: St. Valentine was the Patron Saint of love, after all. Had someone informed me thirteen years ago he was also the Patron Saint of fainting and the plague, I might’ve moved our wedding plans to June.

Fainting and the plague have been ours for much of the past five years. We have become raw and bruised, but also humble and tender. We have become more honest and thick-skinned, and sometimes impatient, but also more gentle and understanding, and infinitely more patient.

We know our run may not last the expected decades most of us get, and so we hold hands in the night, and wrap arms, and share our tears, our nightmares, our grief. We also make a point of finding humour daily, of laughing together. We have fallen and felt shamed, but we have also got up again, and felt profound gratitude. We have been in the crucible and had our lesser selves exposed, and we have emerged, and reflected the light. We are in the crucible now, but we’ll emerge again. We’ll do all these again, hopefully many times.

The crucible is unbearably hot at times, utterly capable of destroying love. It is intense, creating chemical reactions that threaten destruction. It tests resiliency, and if we don’t bend, we’ve learned, we’ll break. It is terrifying, as we’ve both experienced the death of love in our first marriages.

Still, before all this, and perhaps primarily during all this, our love has grown. I hope the future holds easier and happier Valentine’s Days for us, but either way, through thick and thin, in the fire or not, I believe we’ll be in it together.

 

Like a Wobble Doll

I’d fallen into a short, weird sleep just before an appointment I had last week, and was groggy and out of sorts when my alarm woke me. My husband, working from home, offered to give me a ride.

“I can drive myself,” I said, hearing an edge in my voice.

“You’re groggy, and upset, you probably shouldn’t,” my husband said, “plus it’s five minutes away and a ride will save you parking fees.”

“I don’t care if I spend $1000 dollars on parking, or whether or not I arrive alive,” I came back.

These are strong words, unsettling to hear from your own mouth.

I can be a bit of a pill sometimes, or, as my five-year-old long ago once put it, a bucket of pills. Not that I’m the only one in my world capable of displaying unexpected pill-like behaviour—it’s as common as the common cold. But perhaps being a slightly harder-to-swallow pill is unavoidable after so many endless months of swallowing buckets of pills. I am, after all, having potent medicines pumped directly into my veins every week, medicines which put essential benign cells under constant fire as malignant ones meet their destruction. I am working long overtime hours on a confusing and challenging job.

These days, I get sore hand muscles from carrying a grocery bag a little too heavy, or from holding a pencil a little too hard. These days, some of my veins feel like someone has threaded a hard knotty piece of twine into them. These days, I’ve had headaches to trump all headaches, which is something of an adjustment for someone who’s always been proud of not really knowing what a headache is.

I sometimes feel like I’m a weighted wobble doll, a matryoshka doll, a daruma doll. I get knocked down, bounce back, wobble around, find my balance. Repeat. But then I think simply being alive is to get knocked down, wobble around, and then find our balance again.

I’ve given the cellulitis the boot, and fully plan to continue taking back my space in other ways too. As the single long-time and respectful resident of this body, I believe I have some rights, and these squatters, thinking it okay to move in uninvited and then charge rent rather than pay it, all the while multiplying as prolifically as bunnies—they are going to continue to hear from me, more assertively than ever.

Despite the punches and punching back, it’s been a lovely fall, warm and color-rich, sunny and dry. I’ve enjoyed an impromptu couch-surfing stay from my daughter—seeing her in the mornings again, having some creative feminine energy in the house, bonus conversations, a bit of a rerun of days long ago slipped by. I’ve enjoyed naps in the October sun, and visits to the sunny and oxygen-rich pyramids of the Muttart Conservatory. I’ve enjoyed visits with the kids and grandkids, and visits with friends, and lovely everyday gifts from those just here for me with things like an apple fritter, a story to make me laugh, or an enthusiastic declaration of “I’m going to go hug these lab results”.

At a week-night supper my mom cooked for us last week the gifts were of two kinds, the very tangible, and the less tangible. There was the lavish spread: a large platter of delicate salmon and vegetable side dishes enough to cover every ounce of space on the table. And then there were the goodbyes at the end of the evening between my 86-year-old dad and his sister, and my mom and her sister-in-law. The former playfully and laughingly slapped each other around a little, the latter—two women surely not even five feet tall—looked affectionately into each other’s eyes, touched each other’s cheeks, and got verbal reassurance the other was okay.

I had a glimpse of truth in that moment—we live for beauty and meaning and love, ever more so as our bodies begin to betray us. And these things sometimes lie in places not readily evident in our busy lives. My many months of underachievement are no less meaningful than those of the brilliant and energetic young adults looking for better cancer treatments. We are so much more than what we can produce and measure. We are what we value and nurture, valuable simply by virtue of being, by the fact that we love.

Serendipity

It was a morning for feeling needy and pathetic and nearly too proud to permit any kind of love directed my way. I’m still not used to operating at half-battery, and it can make me bristly. Feeling half-productive, half-fun, half-useful, half-decent, half-human can make me decide I’m utterly unworthy. Ahead of me was an afternoon of chemo, which of course was the reason for the bristles, but it also offered up an unlikely and happy little coincidence.

Before the serendipitous conversation could happen though, the one that generated the first genuine smile of the day, I tried befriending my misery by stepping into the role of observer, standing back from my emotions a little, trying simply to see them without judgment, and perhaps even switch the energy driving me to a more neutral and advanced part of my brain. Beneath the surface layer of self-reliance that was telling my husband I didn’t need him to accompany me to chemo, I soon saw several layers of anxiety—fear of being viewed as needy and weak, fear of the impact my being sick has had on what I have to offer as a partner in my marriage, and fear of things not going well on this day, fear of pain, fear of the future.

I’d gone out for a bit to return a poorly chosen bathmat and had a little time before my appointment, so I stopped for a cup of tea and watched this internal landscape of anxiety for a while. I didn’t judge it (anxiety is, under these circumstances, they tell me, completely normal), but I did give it the boot. Nothing personal, just tired of it for the moment. We’ll have tea again soon enough. Not judging is important, but so is perspective, and perspective only comes with sitting back, watching, listening, and deciding what is most necessary for the moment.

Watching the chatty anxious thoughts retreat, I began to envision being assigned the best nurse and having the smoothest infusion ever. (Not that envisioning it is any guarantee, but it is calming, which is never a bad thing.) I began to remind my body to accept and welcome the drugs that kill rogue cells, remind it to let them do their job before kicking them out, and remind it that it has an almost tireless ability to repair essential innocent cells caught in the crossfire.

So an hour later, when my husband told me on the phone he really didn’t want me going to chemo alone, I agreed to swing by for him on my way to the hospital.

We arrive, and my nurse introduces herself. I miss her name the first time around (memories of painful phlebitis distracting me again), but I like her face; it is warm and exotic and open. In response to her “how are you today?” I return a half-smile, and a half-hearted “fine”. A C-plus, maybe, if I’m going to be generous. She’s warm and attentive though, and wonderfully skilled—no retries on getting into my vein today—so I try to salvage that C-plus. I manage a better smile, and tell her a deeply felt thank you. She’s humble, and shrugs it off as luck of the draw, that on another day that same vein may not have been as receptive. I ask her if she enjoys nursing. She does, though she was terrified of needles and blood and starting IVs when she began her career. Now, just a few years into it, she does nearly a dozen a day in the chemo daycare unit.

I tell her she’s good, and she makes me do the requisite name spelling and birth-date recitation.

“You have the exact birthday my mom does!” she responds, smiling widely. “Same date, same year. And mine is three days before hers, on the 16th.” Why she told me that I don’t know, but it’s funny, because not only do I share her mother’s birthday, my daughter share’s hers.

It’s just a couple of dates, but it’s more than that. The gentleness with which she handles my chemotherapy makes it feel like my daughter is sending me her love, which she probably was.

Another patient on the other side of the room was surrounded at that moment by almost the entire remaining nursing staff in the unit, having a serious reaction to the same drug that had caused mine last winter. Feeling a powerful wave of compassion and empathy, I remember the practice of Tonglen, which others have done for me, and for my daughter, and so, as the nurses do their job with the Benadryl and other tools at their disposal, I begin inhaling this woman’s distress, exhaling relief and compassion and empathy her way. It’s an active, physical, non-desperate form of prayer that I love.

The nurses, from where I was watching, were care and compassion personified, professionals in every way, but human beings too, who understood that it is the little kindnesses that matter as much as anything during a crisis like this. The patient stabilized, and my session, with a few adjustments, went well and ended. On our way home, we stopped for coffee and a muffin on a tree-lined street patio, and though I knew that the effects of my treatment would gather momentum as the afternoon unfolded, it was a lovely moment.

In the days leading up to this one, I’d felt a deep fatigue, an effect of my chemo-depressed blood counts alongside an intense week of extended family gathered from all over to celebrate my parents’ 60th wedding anniversary. So much stimulation and emotion packed into a single week. Cousins and aunts and uncles I hadn’t seen since the last funeral I was able to attend, siblings and nieces and nephews I hadn’t seen in even longer.

In the two weeks before the event—before the mixed-bag verdict this week that my treatment is working but that I’m definitely in for another three months of it—it was a happy time of planning and anticipation for this reunion. It was a time of large and lumpy inflamed veins calming down and receding into the background thanks to some wonderful medicine. It was a time of late-summer outdoor lunches and suppers, of new harvest potatoes and peach cobbler, of desperately sad refugee images on our TV screen, of bike rides and sunflowers, of warm, warm winds turning to crisp mornings, of hot showers, of crumbled frozen oatmeal squares, of laundry, dust bunnies, recycling and all other things quite ordinary, and one evening, sitting in the backyard of some friends, an astoundingly full super-moon.

Full, that’s what keeps us going. It’s been a long haul. Nothing compared to the long difficult paths many of you are on, but still—nine months now, and it’s the love that keeps me going.

I plan to settle in for a few days of recovery after this week’s treatment. Sleep is the perfect escape, but always elusive during those first few days. I wake shortly before 4AM. My husband is awake also. We toss and turn for a little while; I read. Then we talk. About our reflexive protections, how we try too hard, or cling, or shut down when we’re terrified. At 6, I’m hungry, and get us both some yogurt. I’m still hoping it might buy me another hour or two of sleep. I read some more, which is usually foolproof. I doze a little after 7:30, wake at 8:30 with a start. My feet hurt, it’s time for my medication. A new day. The mirror tells me my cheeks are flushed, a side-effect, but Day Two is always infinitely better than Day One. Later in the day, I get on my bike and visit the queen of energy medicine. She looks at my labs, and tells me I’m rocking this. It’s a good day.