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.

Some Lucky

On this particular evening, after a grueling day of scopes and pokes, we watched a blood moon rise over the South Side Hills from our table.
We felt lucky to see it.

Quite a few years ago my husband, Asher, returned from a social gathering laughing and shaking his head. “I love the way Newfoundlanders always look on the bright side!” he said. He had overheard a story about a man who had an unfortunate accident and lost a limb. After the incident was recounted, the other people in the room chimed in with a chorus of “some lucky.” The storyteller nodded his head, “It could have been so much worse,” he replied solemnly, “Some lucky for sure.”

Asher and I have used this phrase with a twinkle in the years since. One of our kids sprained an ankle? Some lucky. Ruined supper, set off the fire alarm, but managed to put out the fire in the oven? Some lucky. Wrote off the truck in a collision on the overpass? Some lucky.

The outcome of a situation could always be worse, and the people at that long ago party were right. We knew we were fortunate in so many ways, and we often talked of our blessings over morning coffee.

But last week, as I sang “Whatever Will Be, Will Be” and waited patiently for my appointment with the oncologist, part of me was preparing for the worst. As I walked in to the cancer center, I was breathless with fright. I had no idea what Mom and Asher were chatting about while we waited. The air around my ears was dense cotton, and I was doing the deep breathing I had practiced so often with teens in my office, hoping to contain my panic.

The news I received, however, was the best it could be. I had a wonderful nurse with me during the conference and she put me at ease. My doctor was compassionate and kind as she reviewed the results of the pathology from my surgery and prepared me for the next phase of treatment. Asher and Mom were steadfast in their belief that I would be fine, no matter what. I walked out feeling strong and knowing that I could once again imagine myself retired, or even old.

Asher and Mom and I bounced to the van and hopped inside, chuckling and chatting. Through the window the sky and trees beckoned me to come back fully, to return from my safe hiding space, this careful shell I have constructed over the last few months.

From the round expanse of joy in my chest, life came bubbling. The past 42 years – childhood puddles and school days, so many wonderful friends and family, Asher and our babies, the cabin, pets, trips and suppers, studying and writing and reading and working and living. Memories gathered like campfire wood to fuel the fire which would consume the pain and rehabilitation of recent months. Rising from the ashes, plans for the future with a stronger mind and spirit. A body that will, with time, grow strong again.

As Asher navigated the springtime potholes, I grabbed his hand and gushed, “Some lucky.” Mom and Asher concurred.

“Some lucky.”

We said it reverently, without a touch of irony.

It’s National Nursing Week

Thank a nurse today 🙂

Laura and I just before I was discharged from St. Clare’s Hospital in St. John’s, NL.

Recently, I underwent surgery at St. Clare’s Hospital in St. John’s and I had a week-long hospital stay afterward.

That was a hellish week. There were times I was writhing in pain on the bed or turning in circles in the middle of the night wringing my hands saying, “I don’t know what to do.”

Thank goodness, the nurses knew what to do.

They administered meds, and changed IVs, and reinserted catheters and adjusted pillows to try to get me comfortable. They talked to the doctors about what I needed. But most of all they showed care and compassion and empathy. They held my hand and hugged me. They asked about my kids and commiserated about my totally unfair cancer. They listened without judgment. When I asked, they told me about their children and their own lives. I needed those normal conversations. It made me feel like the world was still turning.

They related stories of past patients who had the same invasive surgery as me but were now scuba diving in Mexico.

They gave me hope. They helped me understand that I would learn to navigate the changes in my body. They gently encouraged me to dream about new adventures when just walking down the hall was a challenge.

Sometimes at night I heard people running in the halls, beeps and buzzers, and yells and calls. I know my nurses were juggling a lot. At the end of a twelve-hour shift, how tired must they have been? But they always came in to say good-bye and let me know when they would be back.

I missed them when I left the hospital, and I’ve thought of them often since. Maybe I’ll go back and visit someday. I want to hear how they are doing. And I will tell them all about my latest adventures so they can pass the stories on to their new charges.

Since I’ve returned home from the hospital I’ve gotten to know some other nurses and they have eased my transition. One nurse in particular has made herself available to me every week for an appointment so she can monitor my progress. She e-mails me regularly and answers all of my questions, provides me with supplies, and reassures me when I am worried. My healing time is lengthened by the radiation I underwent prior to surgery, a fact I didn’t realize until she explained it all to me. She is a wealth of knowledge and information and I don’t know what I would do without her.

Thank-you, Nicole. I hope you like chocolate, ’cause I’m getting you some 🙂

Helping Others Process Emotions

Cancer patients, and anyone dealing with trauma, need empathy and a listening ear.

As a counsellor, I am trained to use what we call an “empathic response.” Many people think that counsellors or therapists give advice, but first and foremost what we do is listen and respond with empathy. We may ask probing questions to help our client flesh out a story or an issue, but ultimately we realize that they are the expert on their own life. We rarely give direct advice to clients, choosing instead to be a listener and a guide, or a sounding board for ideas. When a client is confused or seems to be off-course, we may issue a challenge which is designed to encourage reflection and, perhaps, problem-solving. Listening, acknowledging and affirming of emotions comes first, though.

Why am I writing this description of what a counsellor does? I’ve been reflecting even more than usual lately on how we emotionally support people who have undergone trauma. As someone who is in the throes of invasive, scary and body modifying cancer surgery and treatments, I often feel shut down by the following statements:

Be Positive. Stay Positive. Think Positive. Use your good attitude. Smile.

These are the things we say to people who are going through difficult life events in our culture.

Now, I’m sure I’m guilty of saying these things in social contexts before. In my professional role I wouldn’t say, “Well, you just have to be positive,” to someone who is wracked with sadness or anger or grief. But I’ve probably said something like this to acquaintances in the grocery store or at the theatre when they confide that they are dealing with a difficult problem.

What do people feel when we do this to them? They feel isolated and alone.

We have ignored their emotions. We have given the message that the only acceptable emotion is happiness, and put forth the idea that one must bottle up other emotions and push them inside. We have said, “Don’t share these emotions with me. They are disturbing.”

What would be a better response? How can we support others emotionally?

“It sounds like a really tough time for you,” “You can tell me about your experience,” “This is so difficult for you,” “I’m really sorry to hear this. “

Respond with empathy, make eye contact, and just listen. Offer support. That’s it, no platitudes required. Usually the individual we are talking with will feel lighter after this encounter, and us listeners will feel a sense of efficacy.

Pretending everything is fine when it isn’t drives isolation. Recognition of and sharing of emotion is what creates human connection. And human connection is a catalyst for happiness, so it’s a win-win, really!