The Chemo Emo and her Cloud

Pathetic Fallacy in real life. (So maybe “pathetic reality?”) This cloud appeared as I was battling a terrible dark, low mood. I know I don’t look sad in this picture. I was trying really hard to be “normal.”

On our first summer weekend at the lake, I set out to do what I always do – take solace in the water. Whether it’s playing mermaids with my daughter, water-skiing, swimming, or paddling a canoe, my favourite thing in the world is to be buoyed forth, coasting weightlessly on endless peaks and troughs.

After some time chatting with neighbours on the beach, I pushed my canoe into the water and waded in. There was a sudden rush of fire up my legs and I ran screaming out of the surf, pushing the boat away from me in my efforts to escape the biting pain.

Realization washed over me. Because of the oxaliplatin in my chemo regime, I haven’t been able to tolerate anything cool for weeks. I can’t drink cold water or even cut up carrots without wearing gloves. How did I think I would be able to frolic in the lake? I stormed up the hill to our cabin in my flip-flops. I smacked trees and threw rocks in anger as the dog trailed behind me. I started to cry but had to stop as chemo-induced starbursts exploded behind my eyes. On the deck I composed myself and sent my youngest son down to rescue the canoe, which was floating off toward the beach at the base of our cove.

Like one of my wonderful chemo nurses said, “If you take a turkey from the freezer with no gloves, you’ll break a toe!”

When Asher came along I told him about the water. “I can’t even go for a paddle,” I explained, distraught. He looked at me and exclaimed, “Because if you fall in, your whole body might go into a spasm…” I finished his sentence, “And then I might drown!” Asher raised his arms and shook them about and flailed his legs up and down and I couldn’t help but laugh.

“It’s one summer, Janine. Next year you’ll be back at it.” He was right, but I still stuck my tongue out at him sneakily as he gave me a hug.

Chemo can make one feel cranky and sad. Steroids and other medications are prescribed to ease the side effects for the first 3 to 5 days of your chemo cycle, but these steroids and the processing of the chemo drugs, and maybe my own emotional reaction to the whole process, can send me into a very dark place. My cancer care team recommended I pare down the amount of steroids I take, and that has helped, but I still have bad days. I’ve become friends with a number of people who have been down the cancer path, and we have discussed this darkness. One of my friends referred to this feeling as the “chemo emos.” I thought this was the perfect name. Physically, chemotherapy can make one feel sick, fatigued, cognitively weak and, in the case of my particular regime, can set off the nerves and muscles in bizarre ways. But the mental and emotional grind of a series of chemo cycles can be even tougher to endure.

How does one endure? One method is distraction. As Tolstoy observed of the pitiful, adulterous Oblonsky in Anna Karenina:

He could find no answer, except life’s usual answer to the most complex and insoluble questions. That answer is: live in the needs of the day, that is, find forgetfulness.

It is relatively easy for me to find forgetfulness when folding the laundry, doing things with the kids, or reading a book. I get up everyday and I stay busy. Even on the days I feel the worst, I actively engage in things. I may not have the stamina to run 5 km or attend large social events, but I can always find something to do.

I’m heading into my 5th round of chemo tomorrow, and I’ve come to respect my mood swings. I am fortunate that I get 4 or 5 really good days each time before I go back for my next infusion. And the last number of days have been fantastic – I have been energetic and happy. Rediscovering my yoga practice this week has helped immensely, and as I come close to the halfway mark of my course of chemotherapy I am starting to visualize my “after.”

I don’t want to get overconfident or to tempt fate, but in the past few days I have started to feel like I really do have this in the bag. I have not developed an infection or illness yet, my immunity has not dipped into the danger zone, and my side effects continue to subside in time for my next round of treatment, which means I am tolerating things well. Each day I run through all of these positives in my mind.

When I have a hard time focusing on the positives and the darkness sets in, however, I simply sit with it. In the style of Kristin Neff, I use a self-compassion technique.

I place my hand on my heart and think, “I am having a really hard time right now,” and I breathe for a few minutes. And then I think,”What do I need to do right now to feel better?” Sometimes the littlest thing makes me feel better. A cup of tea. Sitting in the sunshine. A walk. A hug. A chat. Reading. Or, more recently, some yoga.

Yoga on the dock with my downward dog.

Writing this post has been a two-week long struggle for me. I did not want to seem negative or whiny. But I needed to highlight the importance of maintaining one’s mental health during cancer treatment. If we focus only on the physical and ignore our moods, our sadness, our anger, our thoughts and emotions, our bodies will still be stressed.

Healing requires a holistic approach. Mind, body and spirit.

Talking to a professional, yoga and nature walks, healthy food and family meals, mindfulness, visualization, self-compassion and a little old-fashioned Tolstoy-type “finding forgetfulness” (or task-engagement) are some things that help me support physical, mental and emotional health on a daily basis.

I might not be riding the waves this summer, but I am learning to manage these peaks and troughs.

We all go through tough times. See a counsellor or a psychologist if you need to. Talk to someone, develop strategies that work for you, and find a little something to look forward to each day.

Relaxing in the garden with some fruit tea and a book can make the infusion process a little more tolerable.

Powerports, Chemo and Bambi, Oh My!

One of these things is not like the other… Asher had a good chuckle when he discovered this visual reminder of my “chemo brain.”

I spent most of last week wobbly and confused. For some reason I generally refused to give in to my fatigue and nausea and just lie down. Mom always said I was too nosy for my own good and, as usual, she’s right.

Motherhood makes it hard to let go. When you have three kids and a husband all doing different things at different times and the phone is ringing, well, what do you do? Even though your family has told you to go relax, you get up and answer the phone, and trundle into the kitchen to wash some dishes, and wander around vacantly with half an armload of laundry, and eventually find yourself at the grocery store quietly retching because you looked at the bloody ground beef. While there, you try not to touch anyone or anything because you have almost ZERO immunity and have been warned that a single infection will land you in the hospital. This is also why all of a sudden you practically bathe in hand sanitizer, a chemical soup you haughtily bypassed up until very recently in favour of natural soap.

Yes, you green-cleaned your home for years, but now? You are at the grocery store and bleach and lestoil are the first items on your list.

There is a lot to get used to when you start chemo.

There was a trip to Corner Brook for the insertion of a power port. Asher joking that powerport sounds like a tiny speedboat. We were both thinking about our carefree rides on the lake last summer. We didn’t say it. A stop at the gas station by the Springdale exit, the bathroom break, the wisps of fear clouding my vision, a weak smile for the attendant. Sitting in the parking lot of the hospital. Asher on a work call. Me, breathing deep.

The powerport is a portacath – a device implanted in the chest which allows the nurses to access a central line. They can then give chemo without burning up and collapsing the other veins in the body.

I knew I would be awake for the procedure. I wanted to be asleep.

Three burning needles in the chest. Insert the port, access the vena cava with a little tube, suture everything closed. Through it, I spoke with the nurses and doctor about healthcare, their jobs, my job, the experiences of cancer patients, the meaning of life. Their kindness like a blanket as my arms shook. The need to be social overcoming the mushrooming desire to yell “stop.”

We went out for lunch after. On the way into the restaurant I fell up the stairs and startled a workman. He ran over, looking concerned. “It’s ok,” I chirped, “I just had a procedure. See?” Childishly proud of my bandages, I stroked them like a new pet.

Asher whisked me into the restaurant, where I made a concerted effort to be more dignified.

Mom and I enjoy a glass of wine on her deck. Note those lovely bandages 🙂

Then, two days later, my first chemo day. My chest was sore from the port insertion. Early morning blood tests, examination by a doctor, lots of prep to do. The cancer center was peaceful and welcoming. The doctor and nurses were friendly and helpful. My mom was with me.

I should’ve sailed through it… but when the chemo drugs were hooked up to my port I panicked. All of the bags of drugs were marked with “hazard” warnings. The nurses handling the bags were clothed in protective garb. I was certain my throat was closing over – that I was having a huge allergic reaction to this poison.

The nurses flew into action and got my breathing under control. Mom smoothed my forehead. I was amazed how calm people could be when I was so obviously on the verge of dying.

A few minutes later I was happily colouring a Bambi picture, Mom and I laughing as she fanned herself dramatically, imitating me in freak-out mode. My friend Krista was texting, telling me to listen to Bobcaygeon.

Crisis averted.

So, I’m in the second week of my first cycle of chemo now, and I’m still learning. I have 12 rounds to complete, which should take 6 months if all goes well. I’m not knowledgeable enough yet to give tips or advice to anyone else about to embark on this experience. I’m keeping track of everything in my journal so that later on I may be able to do so.

I’ve been thinking about responsibility, and trying to be mindful about how I navigate this challenge. Every now and then I find myself sitting on the edge of the tub thinking, “How did this happen?” and the truth is, I’ll never know. No one knows.

But this problem is mine to manage, for better or for worse.

Bambi learned that tragedy was as much a part of his forest world as joy and beauty. We all must learn and grow and grieve and rejoice within the confines of the imperfect nature of our lives. The hardest trials make us the strongest. I keep my Bambi picture on my writing desk now as a reminder of that.

Whether I asked for it, whether I want it or not – for the next six months, chemo is my teacher.

I call it “Bambi, an Interesting Swarm of Grasshoppers, and the Great Prince of the Forest.”