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.

Gladys Learns the Art of Letting People Help

Gladys and Mabel sample some immuno-bark and gin and tonics on the deck.

At some point in the course of the last 4 months, Gladys and Mabel appeared. Whether these gals are alter egos, imagined incarnations of our future selves, or just a hilarious take on the two old ladies who walk around the pond on “This Hour Has 22 Minutes,” I don’t know. In a typical Newfoundland dual-matriarch situation, Mabel also answers to “Nan,” and Gladys is known to be called “maid.” But they speak mostly over text and pass on advice and comic relief at the most opportune times.

A recent text from Mabel: “Eat your bark, Gladys. It will give you sustenance!”

This is in reference to a concoction Krista whipped up – delicious dark chocolate, nuts, dried fruit, and a clove/cinnamon oil blend that is meant to boost immunity. It really did sustain me through the first two days of my last chemo cycle, so as usual, she was correct. It was about the only thing I could stomach, and I feel it has magic powers.

I have no problem graciously accepting gifts like immuno-bark now, but when I was first diagnosed Krista took it upon herself to make me understand how important it is to accept help. I was pretty obstinate in my selfish belief that I could handle everything on my own, and I balked at the idea of people going out of their way for my family and I. I didn’t want anyone going to any trouble. Maybe this is when Gladys and Mabel came to be. It was probably easier for Krista to point out the foolishness of determined old Gladys than it was to argue with her best friend who’d been diagnosed with cancer.

Now, Gladys, you are being stubborn. People want to help. Now let me handle it. I’m serious.

Finally, I quit arguing. Krista and other friends of mine and mom’s arranged meals for my family, rides to activities and practices, and even the recording and sharing of my children’s performances during a play and music festival. During the weeks I was away for treatments, appointments and surgery, Krista and our friends and neighbours helped keep my family’s routine normal. Friends from all stages of my life journey kept me connected to the world and smiling through text conversations and messages. My husband, parents and parents-in-law, who were all running our household at different times depending on who was away with me, had lots of support. Things happened that I still don’t even know about, and I’m so grateful.

Krista and I have been friends since we met in an art class about 14 years ago. Our kids and husbands are the best of friends, and we have had many crazy adventures. A couple of years ago, Krista and I were training for a 50 km ultra-marathon on the East Coast Trail. For months we arose early before work to run in all kinds of weather, and took weekend getaways to get our long trail runs in. One epic trip saw us running Gros Morne Mountain and the daunting Green Gardens Trail in a 24 hour period that also included a 3 course meal, hours of dancing to jigs and reels, and the closing down of a bar where we entertained the tourists with a rousing rendition of “The Ode to Newfoundland.”

I was always a little worried about keeping up. Krista is a triathlete and has even finished a half-Ironman competition in very good standing, a fact our friend Kyla, a formidable athlete herself, often repeats to impress younger and presumably fitter people than us on girls’ trips: “She’s an Ironman, you know!” she has been known to shout, pointing emphatically at Krista. I shouldn’t have worried, however, because in true Krista fashion, she always adjusted her pace to match mine.

The ultra-marathon itself was held on a foggy day in late October. I had had the stomach flu only a couple of days prior, and wasn’t sure how I would hold up. Once we started, however, I sensed a lightness in my feet I didn’t usually have. We trotted along cliff-side, up and down the heights, in and out of fairy woods, across streams and creeks. To our left, the coastline marked our journey. There were times we felt the spray. We lost precious minutes gingerly sliding down sheer spots on our bums, hanging on to rocks with outstretched legs and arms like water bugs. We saw ships. Later, farms. Cows and horses. Concrete observation structures left from World War II, made friendly with graffiti.

We knew from all of our training that we usually hit a bit of a difficult spot around the 12 km mark. This was when our legs would become tired and jelly-like, and our moods would plummet. But we had devised ways to get through this plateau and, on this particular day, we sang back and forth in an effort to work it through. After a while, though, Krista grew quiet, and I started talking. Telling stories, edging her on. I knew something was wrong. It turned out later it was her knees, but she didn’t say it out loud at the time.

She just continued on quietly, one painful step after another.

I started to fret. But then there was a man running ahead dressed all in orange. For a number of kilometres he was our beacon. Squinting forward, we’d see him crest a ridge or emerge from the shade of a grove of spruce and we would call, “Orange Man!” There would be a little boost for a moment, as we tried to keep him in our sight.

Then, another man chugged up close behind us. He had an interesting duct tape arrangement on his legs. Occasionally we would hear him stop and cough, his hands on his knees. We stopped, too, because he was violently winded and we were worried that he was going to tumble hundreds of feet to his death. Feeling conflicted, we conferred each time he stopped, “Should we stay with Duct Tape Man? But… Orange Man is getting away!”

For a while, Duct Tape Man and Orange Man helped us feel less alone there near the craggy fourth corner of the world. Ultimately, though, the decision to abandon our trek was made for us by the race organizers at the 42 km mark, when we missed the cut-off time for the last stage of the race by 10 minutes. I was secretly glad, because I knew Krista was hurting.

That night I couldn’t stop thinking about Krista’s day. How could she run in pain for so many hours straight? What culmination of will, training, strength and stubbornness would allow someone to keep putting one foot tortuously in front of the other for hours at a time? It could easily have been my knees that acted up that day, and I do not think I would have had the fortitude to continue.

It was impressive.

For now, though, Krista and I have gone from refusing rides from confused moose hunters who want to save us from the wilderness to deciding whether to have peppermint tea or wine when we go out for lunch. Her knees are better and she continues to train and work out and compete in events, but she also makes time to take trail walks with me on Sunday afternoons when she has already done more than her fair share of exercise for the day.

As the ultra-marathon of my cancer experience continues to unfold, she makes me laugh daily, sometimes as Krista, and sometimes as Mabel.

Id spare my right hip for you if I could, Gladys. Well, maybe my left.

I have always believed that people are intrinsically good, but I have learned more about compassion and caring in the last 4 months than I ever thought I could. And I think more about the trials and suffering of those who do not have the social support that I do.

In much the same way Krista and I latched onto Orange Man and Duct Tape Man when we were faltering on the East Coast Trail, my family and I gather strength from the support we feel around us. Our human nature means we look to other beings for connection in our time of need. Sometimes going through surgery or treatments is unbelievably difficult, but being alone would be the worst thing. Plus, I need my family and friends to make sure I take care of myself.

I hope the hell you got a nap after, Gladys!

And, just like Krista on the East Coast Trail, I am putting one foot in front of the other. While I do, I am learning to accept help when it is offered and even to ask for it when I need it. I feel so incredibly fortunate to be a part of this amazing network of family and friends. I hope in the future to help support others who are going through similar experiences.

Thank-you my family, friends, colleagues, neighbours, and blog readers for being the Orange Man on the horizon, the Duct Tape Man to the rear, and the coastline on the left marking the way.

Now, if what goes around comes around, I’ve got a lot of casserole drop-offs in my future. So if you need anything, Gladys is here for you, maid. And if I’m not up to it, I’ll call Mabel. She’s an Ironman, you know.

A birthday card from Mabel to Gladys.

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.”

Old Man Cancer, My Ass!!

Look how young my brother and I look! I had no idea I had cancer.

Each year at our local high school the grade-twelve boys and girls are taken in separate groups into the library by the school nurse so that they can learn the steps for completing self-examinations of the breasts or testicles.

Teaching people screening tools such as these that they can use at home has surely saved hundreds of lives.

There has also been a campaign here in Newfoundland and Labrador in recent years encouraging women to get pap smears. I’ve seen the posters all around town and they have certainly reminded me to head to my doctor for my pap test.

But I’ve never seen a poster listing the symptoms of bowel or colorectal cancer. And I’ve never heard anyone say, “Check your poo.”

I think people assume, as I did, that colorectal cancer is an affliction that affects older people, most of whom are male. And we assume that, since screening is in place (usually encouraged in people over 50) the problem is more or less looked after.

But, according to the Canadian Cancer Society, colorectal cancer is the second leading cause of cancer-related deaths in Canada for men and the third leading cause for women. It is the second most commonly diagnosed cancer in Canada. Colorectal Cancer Canada notes that colorectal cancer and rectal cancer are on the rise in young people:
“By 2030, colorectal cancer incidence rates will be up 90% in people between ages 20 and 34, and 28% for people between ages 35 and 49.”
https://www.colorectalcancercanada.com/more-young-adults-getting-dying-from-colon-cancer/

The FIT test has been rolled out in Newfoundland and Labrador and this has encouraged increased participation in the colon cancer screening program. According to
Dr. Jehan Siddiqui, clinical chief of the cancer care program, this will “translate into better outcomes for our patients as screening will result in earlier diagnosis and, therefore, more effective treatment of colorectal cancer.”
https://www.thetelegram.com/news/local/new-report-sheds-light-on-newfoundland-and-labradors-cancer-statistics-280694/

I would encourage anyone, regardless of age, to complete a screening if you feel that something isn’t right, or if you have a family history.

I wish I had been educated about the symptoms of colorectal or bowel cancer, or that I had realized that my lifelong bowel issues were a risk factor. I may have been more vigilant and asked for screening earlier. I may have seen my doctor last spring when I started having mild symptoms instead of waiting until after Christmas when they were more advanced. I had no idea that I could be harbouring cancer, and I did not know what to look for.

If you notice blood or mucus in your stool, a feeling of pressure or a feeling of not completely emptying your bowel after a bathroom visit, changes in bowel habits or a change in the size of the stool that lasts more than a couple of days, have pain or cramps in the abdomen, feel tired or lethargic, or lose your appetite / lose weight, you need to see your doctor. Do not be afraid to ask for a rectal exam and a colonoscopy. This is what saved my life, and I am fortunate that my doctor examined me when I went to her office.

So, remember, check your poo! It’s not sexy but it might save your life 😉