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.

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Hot August Nights, Cool August Mornings

Saturday found a tired and depressed me lying on the couch with my equally tired and depressed husband, me being very careful not to bump my very sore arm in any way. Listening to music and to summer sounds coming in through the open window, reading, napping, my more minor aches and pains gradually receded a little. For a while, it felt very much like the cabana we had in Hawaii all those years ago, minus the warmth of course, and the breeze and the sound and smell of the ocean, it being a cool rainy August day in northern Alberta. But still, it was lovely, so lovely.

What is it that is most potent in making an ordinary, tired, post-treatment afternoon lovely? It can’t be the exotic extras of tropical breezes, not really, not when the feeling is the same as the one that comes from the simple presence of the human being faithfully sharing the moment with you, can it?

That sore arm–it’s throbbing with yet another damaged vein, inflamed and hard and the diameter of a pencil just underneath my skin. This is what my treatment does to my veins and other sensitive cells: it burns them.

Earlier this week, friends tell us about their daughter’s pain, about their anguish, sweeping and soul-threatening. I think of another friend with cancer, of her family’s grief and fatigue. My nights are restless, morning coming too soon, way too soon, 5:30 AM too soon. I’m tired and want the blissful escape of sleep, and on one particular morning am weepy and angry, not the tiniest bit capable of gratitude.

So I drop the bar a little. Gratitude can wait; it will return in due course. For now the task is to tolerate the emotional and physical realities of the moment. I’m sick. I’m trying to get well, and this is, as one astute friend put it a few days ago, a challenging job. It is an exhausting job, and a boring, lonely, uncomfortable, and frightening place to spend so many of my days.

The living room abruptly feels beyond familiar and boring, impossibly and endlessly the same. I’ve clearly spent too much time in here over the past eight months, time enough to develop a serious case of treatment fatigue and cabin fever.

It’s too early in this chemo cycle for the idea that has now popped into my head. My body is fatigued, my blood counts are low, and I probably shouldn’t, but I’m alone, and a little impulsive at the moment—I start pushing furniture around to rearrange it all, so it feels a little different, gives me a little different view. I don’t have stamina enough for a bike ride or a walk, but this, the little bursts of energy required for moving furniture, this feels good.

I try to keep a gratitude journal of sorts, to remind me when I feel anything but thankful; I learned this not from Oprah, but from my parents. I decide now, in this little window of opportunity, to visit it.

I felt well, relatively, with my week off treatment last week, and my Folk Music Festival experience was, as always, rich and wonderful, delivering hot August days and nights, and sound enough to fill thousands of hours and ears. Also wonderful was the supper we had with friends the night before this last treatment. And then it was back to the Cross Cancer Institute, gratitude becoming a little elusive again.

The best kind of medicine arrived again though, as it always does. This time on day two of my chemo cycle, in the form of a friend dropping by with an impromptu lunch, bringing rice rolls, beautiful sweet corn from her garden, a lovely pineapple coconut loaf of bread, and an open grounded spirit, ready to engage, to understand my experience, and to be real about her own.

Staying grounded is vital. I have a number of reasonably reliable tools to that end, but none more so than face-to-face human connection.

Is that vein infected, I wonder for the millionth time? It sure is red and swollen. I’ll call the hotline tomorrow, or take it in to Emergency if it gets worse, I promise myself. For now, I immerse myself in Gabor Maté’s In the Realm of Hungry Ghosts. I’ve read it before, but the title beckons. I’m living with hungry ghosts of my own right now, ghosts that seem to have grown larger with illness, with being unemployed, with not knowing my future, with being unsure of my role, my purpose.

Maté reminds me that addiction arises from the desire to be free of wanting, free of longing for a different state. “The addict craves the absence of the craving state. For a brief moment he’s liberated from emptiness, from boredom, from lack of meaning, from yearning, from being driven, or from pain.” He reminds me that that emotional isolation, disconnection, powerlessness and stress are the conditions that create the neurobiology of addiction in human beings.

I don’t want to encourage this kind of neurobiology, and resolve yet again to resist the temptation to allow feelings of powerlessness and disconnection to grow during this period of unusual stress. I drag my husband and my throbbing arm to see a musical radio play at The Fringe Festival. I love Edmonton for these things. The play is funny and silly, the singing beautiful, and it keeps me smiling.

Afterwards, we do what we do less often now that I’m not well, but used to do regularly: on our way home, we stop at a little wine bar across the street from where we live. I have a blueberry tea, and we share some snacks, and I’m still uncomfortable with my arm, but it’s lovely to be out.

When I wake this morning, another overcast and very cool August morning—eight degrees when I first check—I gingerly check my arm. It’s still tender, but not throbbing, and less red, just an angry, enlarged vein. Friends have suggested brunch. We end up on a rooftop under heat lamps, and, again, it turns out to be a couple of hours of the most excellent kind of medicine. My vein will heal, as will the rest of me.

A Hint of a Smile

No amount of bright paint or floral wall décor can make the place feel less frightening to me. None of the cheery smiling faces can really take the edge off of simply being there.

Sure, there are amazingly beautifully brave people all around—inspiring—as the staff who love working at the Cross Cancer Institute is quick to say. Still. All I could think about was those whose news today—or yesterday, or last week or last month—wasn’t good.

Cancer is a thief.

But you go through the motions, almost robotically, answering the faces behind the desks “how are you” with “fine”, even though you’re not. (I did append my “fine” once today with “that’s a lie,” which registered just a hint of a smile on the face of the clerk.)

But I am fine, now, and very, very thankful.

And I’ve forgiven myself for being short with my husband this morning, telling him that no, I’m not interested in what Chris Hedges is saying, not today, and yes, I know we’re normally on the same page, but I can’t think about political and corporate corruption, not today.

The tears came when I got home, within the safety of his hug. Then the joy: I can tell my family the good news. And the kids are coming for dinner.