Rocky Terrain and Chemo-brain

hanaI woke too early today, too much on my mind, envious of my sleeping husband. I read an article on the health and cancer-treatment benefits of intermittent fasting, thought about it for a little while, and found myself responding contrarily. When isn’t intermittent fasting an unavoidable, built-in, and unpleasant feature of cancer treatment? Besides, endorphins and pleasure, essential to healing, can be hard to come by when you’re in cancer treatment, and food has always been a reliable stand-by for me on that front, so I doubt I’ll be voluntarily restricting intake anytime soon.

So I make myself a piece of toast with butter and soft mild Gouda, and feel a little less contrary. But you’ll forgive me if this post is all over the place? Attribute it to the rocky terrain I’m on, or chemo-brain? To chipping a tooth yesterday, on a piece of toast of all things? To noticing I’m losing my very, very short hair yet again?

It’s Day Four of this round, going better than last, and the one before. Fresh morning air is coming in through the open door. I feel a moment of gratitude. One can be contrary and thankful in the same breath, right?

I got out on a bike ride on the weekend, and out to eat, and to the Heritage Amphitheatre at Hawrelak Park for the Father John Misty show, thanks to my sister for the last minute nudge. Got a very warm welcome from friends, another endorphin rush. I felt good, very, very pleasantly surprised, almost normal.

I’m not normal anymore though, and I never really forget. Even when I think I have, even when I’m having a great week.

I really did have the loveliest birthday week. Family and friends were beyond generous and kind. I even had all three kids here with me, including the far-away California one, which was a lovely, lovely birthday gift. But here’s the thing—treatment is difficult even when it’s going as well as it is for me this time around. And what happened back in February—when treatment definitely did not go well—has lodged itself in deeply in some part of my brain, from where it occasionally rears its roaring head, as it did the day before my most recent chemo last week.

I’d calmly headed out for my usual pre-treatment blood work and consultation at the Cross Cancer Institute, seeing no clouds of any sort on the horizon. This is routine and straightforward. But what should have been a brief and uneventful visit stretched to three hours, and submerged memory, like an angry volcano, had time to erupt.

The lab took five minutes. A consultation with a new resident took six. The consultation with my oncologist took another six. Ninety-five percent of my morning was spent waiting, seeing so many sick people come and go. This, if you need help imagining the problem, is a lot of time to absorb the treatment fatigue in the air, the oceans of grief and fear in worn-out bodies and fear-filled faces waiting with me, waiting, waiting.

I’m finally finished, leave, and see immediately that I planned poorly. I need to talk to someone, vent a little tension, but it’s a workday, and nobody is available on short notice. One dear friend is enduring her own Cross Misery at this moment. Nothing is wrong, but everything is. I can feel the surge of a powerful wave of regret and need. Today may well have been my last chance for a couple weeks to milk feeling well, to eat out, to have fun, and it’s quickly slipping away. And I need to put into words all the hope, courage, fear, grief, denial—and in some cases, relief and joy—carried in the halls of the Cross.

No problem, I tell myself, I’m an adult. I’m hungry, I’ll lunch alone and run some errands, and talk later. I do this, but did not anticipate lunch would feed the powerful wave of emotion that had hit me. It did. The house was empty when I returned, and when my husband eventually did get home from his meeting, I no longer trusted myself to talk much. I filled in the broad strokes, but they were slate gray and brown and not terribly pretty.

I get on my new birthday bike, which has been the best gift ever. I won’t go hard, I promise my sore muscles. But I do go hard, and further than I planned. On the way home I stop at the grocery store and fill my pack. I think I have my bearings. I get home and remember—chemo tomorrow. And the wave crests. The limbic part of my brain now fully trumps the logical. I wanted today to be a party. I want not to be on the sidelines most of the time when others get to enjoy wine and a bounce in their step and easy untroubled nights. I’m teary and angry and self-pitying.

My husband was patient, and alongside my fear and anger, I felt much empathy for his listening ears. And in the night, his arm around me, I know that though my experience is mine alone, I’m not at all alone.

I finally step back a little from the ambush and see a bigger picture again. It’s been a lovely, lovely ten days, no chemo, so many moments of joy. At my mom’s sunny dining table, I’d eaten my first big plate of food in five days, and it was so good. I left with a satisfied tummy and a giant bag filled with leftover goulash and mashed potatoes, mashed yams, homemade apple sauce, bread, broth, oatmeal cookies and honey cheesecake (for my bones, I tell myself). Have I mentioned that my mother is 80?

A wide river of birthday pleasures is where I was camped for ten days. We ordered in giant platters of amazing Greek food on my daughter’s birthday. And on a perfect, velvety summer evening the night before my own birthday, in the backyard of some very gracious friends, we all ate mountains of divine BBQ’d chicken and couscous, and the most decadent chocolate caramel cheesecake ever. I was high on love and a giant glass of Sangria, last week’s chemo finally taking a proper back seat to my life. On Sunday we enjoyed another made-to-order evening in my sister’s backyard, complete with yet another luscious homemade cake—this one a creamy nutty layer one that is my mom’s signature cake. Birthday kindnesses and lovely, lovely words—words like drops of sweet cream—kept falling on me. A yellow rose and a box of chocolates, a cream-coloured rose from a roommate from 40 years ago, a giant bouquet of chrysanthemums. I felt ridiculously spoiled.

Then I say a bittersweet good-bye to my son, and with it comes an acute awareness that my children have quietly slipped by me in the passing lane. They are smarter, stronger, braver, more honest, and more talented and accomplished than I will ever be. This brings me great pleasure.

I wake early on the day of my treatment. I take care of appointment scheduling puzzles and housekeeping details and pay some bills, and I steel myself. I’m greeted by yet another nurse, who hooks up a juicy deep vein, and, after grimacing for a second, I smile and thank her, and settle in to watch and wait: A slow, clear, silently toxic drip that will beat up my cancer. I focus my mind. Allow the drug to do its work, exhale unwanted effects, and resolve to tolerate what I must with grace.

We finish, and pay today’s slightly smaller but sill giant parking fee. (Do they really have to charge cancer patients these rates?) We leave the dark parking lot and drive into skies turned very dark over the last hour. Hard, hard rain and hail fall, and then, just as suddenly, the sky is blue again, the air fresh. At home, on the balcony, the sun on my legs is warm and soothing. I fall asleep instantly. I sleep again after a little supper, and then most of the night.

Clear Skies, Cancer, Boxes of Chocolates

rain

I want it to rain. Rain, rain, rain, steady hard rain with the power to wash the hot, smoke-filled air and put a damper on the hungry forest fires raging out of control all around.

But then, I often want a lot that is beyond my control.

Just a few short months ago my doctor told me things were looking so good that I didn’t need to worry about resuming chemo until the fall. And just as I’d written my enthusiasm and joy about this amazing news, we learned that our niece had died of her cancer, and that our good friend’s cancer had gone on a massive offensive, progressing to where it had not been in many years, and later, that another friend who lives with chronic debilitating pain was suffering a turn for the worse.

I never did publish that post. It seemed gloating, self-absorbed. But then a short five or six weeks later, I got my own bit of bitter news—some suspicious pain, a reminder that I never did finish treatment back in March, some worrying test results, and an all-new treatment schedule of my own, one that was definitely going to interfere with my enthusiastic summer plans. No big surprise, but still, my husband and I sat down at the kitchen table and wept.

The good news was that we were going with a different drug, one that carried no risk of the horrible neuropathy and systemic pain I experienced in February, one that was going to be “virtually impossible to have a severe allergic reaction to.” This was calming, hopeful, gratitude-producing information.

Still, it is a chemotherapy, medicine on a mission to kill cells both problematic and essential. I tend to be both optimistic and anxious, sometimes in equal parts, sometimes in swings of extremes, but I set out for my first treatment relatively tilted toward optimism. It went well. Until two days later, when I again found myself weeping and cursing both the universe and our not-very-progressive state of cancer treatments. I spent nearly the entire time between my first and second treatment feeling miserable in old familiar and entirely news ways. And tonight, at 4AM two days into this most recent cycle, I’m insomniac (thanks to side-effect medications), and waiting desperately for rain.

Life, eventually for most of us, turns out not to be the proverbial box of chocolates Forest Gump’s mother promised after all. It has far too many bitter, not-at-all chocolate pieces, bad-tasting surprises covered in very bitter-tasting chocolate look-alike.

Still, through the heat this past week, I found sweetness alongside bitterness again too. My daughter has been wanting to accompany me to treatment for a long time now, and had the day off this time. She’s just finishing a move, and carrying sorrow and struggle of her own, but she put her curly hair up, and put on a bright yellow dress, and looking like the original blossom of beauty, drew smiles by the dozen walking through the halls of the cancer clinic with me. She held my hand as they started the drip, and we chatted, and I felt loved. The treatment was the most stream-lined ever, record-breaking for me. Not a hitch, in and out in an hour.

Another dear friend, highly skilled with tiny strategically-placed needles, offered instant nausea and pain relief and an amazing endorphin bath for my tears the next day. I felt loved. Another friend, by way of the music she makes, offered her version of prayer. I felt loved. Another offered steaks for the boys and birthday cake for two of us. I felt loved. Another yet is planning an intimate potluck birthday get-together to include a few other friends and our now-grown children. I feel loved. My sister, dropping in with a lovely plate of cooling watermelon in bite-sized juicy delights, had set a picture of me as her phone wallpaper. “I was having a moment,” she told me. I felt loved. My mom called to see what goodies she could cook up for us: Baked ribs for my husband, sugar-free apple-crisp for me, and who knows what else she’ll whip up. I felt loved. She’s 80, which is how long I plan to stick around in spite of the odds against me. Others texted and called, offering to come visit, or chat by phone, which I will joyfully accept with every significant return of energy I experience, I promise.

My youngest son, in excruciating back pain over the past month, picked me up from my needling friend’s place yesterday, and elicited the same enthusiastic looks and smiles as had my daughter’s sunflower-yellow dress the day before. No, it wasn’t a yellow dress, though it may have been as much his shorts and shirt as his charming grin. My son from California, the one who will be wearing his outstanding laugh and energy and medical mind, is coming for a visit, and will be here for his sister’s party, and mine, and his grandma’s, and just hang out with all of us.

I feel loved.

I have new and better chemo side-effect management pills this round, so should be much better by today’s end. Better yet, I get this week off treatment entirely. I’ll get to go to my daughter’s birthday party, and I’ll get to go to my own, and I’ll get to hang out with the kids. Love, like light on a horizon, or stars in a dark desert sky, beckons.

It may not be exactly the summer I planned, but I’m going to be hopeful the treatment schedule will accommodate at least one traditional highlight for me: Four days of the Edmonton Folk Music Festival, for which we always go to great lengths to get tickets for. Many favorites coming this year: Angus and Julia Stone, Brandi Carlile, Danny Michel, Edward Sharpe and the Magnetic Zeros, Harry Manx, Sinead O’Conner.

So alongside the box of imitation-chocolate covered bitter misery, there have been genuine chocolate surprises. And, from the weather experts yesterday, a promise of rain, lots of rain, cooler clearer air. I’m counting on them.