An Actual Year of Weather

It has been a year. A year since a doctor looked me in the eyes and said, “I have bad news.”

There is so much to say, and nothing to say. I’ve been writing and writing. There are a thousand moments, a billion thoughts, a zillion reflections.

Cancer leaves one with a multitude of things to adjust to.

Just this morning I was at the hospital for a routine test. It was nothing, just a follow-up, and I am sure I am fine. But my anxiety was high because being in the hospital hurts my throat and makes it hard to breathe.

I walked past the cancer clinic and felt this strange empty feeling, like I missed the place. The truth is that as much as I hope I never end up back there getting more treatments, it was a safe and hopeful place for me for a long time. Saying good-bye at the cancer center was a transitional moment and isn’t that just what life is full of?

Driving home I did some fire breathing to try to relax the vise in my throat. This is where you inhale deep and then drive the air up the back of your throat as you stick out your tongue and make a low “ahhhh” noise. It helps. Oddly.

I may have gotten some weird looks at the lights.

Oh, I’ve missed you, dear reader. I’ve been so stuck between wanting to say everything and needing to say nothing.

I wanted to tell you that my hands and feet feel like they’ve been stuck into a hive of bees, and that my joints and muscles hurt all the time. Chemotherapy damaged my nerves and addled my brain and made my ovaries fail. I didn’t lose my hair, though, so there’s that. Also, my tastebuds did rebound and I can taste my food again. I stop numerous times everyday while eating and think, “oh, this is soooo good!”

Sometimes I am struck by an immense feeling of gratitude to be finished with chemo and to be healed up from surgery and radiation. Being sore and numb and buzzy and fatigued is to be expected, and with time I will get better.

I am alive.

A year ago I missed my daughter’s performances in the Kiwanis Music Festival because I was in St. John’s getting radiation treatments. A year ago she played the part of “Fern” in Charlotte’s Web and I was not there because I was in the hospital.

This year I will be in the front row, for every single thing.

A year ago I prepared February birthday suppers for both my boys not knowing if I would be around to see their next birthday. I wrote in my journal, “Please, please let me be here next year for my kids. Just give me ten years, so I can help them grow up.”

And now I have the luxury of thinking I could live to be old.

It has been a year and I have learned to be careful about what I expose myself to. I have spent too many nights worrying because I made the mistake of consulting a website about recurrence statistics or because I have a new pain and I don’t know what it is.

My mom always says, “We will worry about it when there is really something to worry about, and not before.” And that is my mantra now.

It has been a year and I beat back the rushes each day, the nettles reaching up to sting me. The fog is lifting. The clean, blue lake of my life beckons. I will emerge from this gnarled foliage.

Cast your worries carelessly like garments on the shore, my friends. We will swim and swim.

Photo by Robin Dalton, Badger Lake, October 2019

A Little Cat and a Lot of Cheer this Year!

Destroy the Christmas tree? Me? I would never!

Our kitten is slowly destroying the Christmas tree, and I’m okay with that. His name is Varjak Paw, after a cat in a book which Caleb’s beloved grade-four teacher read to his class, and to Annika’s class a couple of years later. Varjak is a sassy little guy, with slightly bowed front legs that give him an exaggerated swagger when he walks. He regularly attacks Cleo’s tail, in attempts to get her attention and have a good wrestle. He also likes to climb inside the fridge when someone opens it, and has been known to lick the butter if the cover is left off. We have surmised that one night he pushed a full chicken off of the kitchen counter so that Cleo, who was waiting patiently on the floor, could eat it. The roaster was licked clean when we got home, and both pets were hiding nervously in the playroom, but they didn’t need to worry.

I just laughed. We all laughed and laughed. It is hard to get upset about little things these days.

You see, my scan was clear. My oncologist told me I am cancer free. It is a wonderful thing, a truly fantastic piece of news. The best Christmas present ever, for the whole family. And I am full of gratitude and happiness. Every moment from now on is a gift for me, because I faced a life-threatening illness and survived. I am a survivor now.

I’ve been struggling to write this blog post, because part of me wants to wrap this whole experience up, put a bow on it, and say, “I’m done with this, it is over.” I feel pressure to do that. I keep saying things like, “onwards and upwards!” or “That is over, now back to normal life!”

But cancer changes you.

An old friend messaged me and said, “I am thinking of the thoughts, perspective and knowledge you’ve experienced.” I responded, “I feel utterly changed. And yet entirely like myself.” I am still processing the whirlwind that was the last ten months and, for some things, there just really aren’t words. There is understanding, though, and shared experience.

As I was thinking about how to write this post, I received an eloquent e-mail from another friend, who is a two-time cancer survivor. She said that if she had had something like this blog to read when she was first diagnosed with cancer she would have felt less alone with the disease. She thinks that many people who are dealing with a cancer diagnosis will find solace here.

I am so thankful that she sent me that e-mail, because I was reminded of why I started writing this in the first place. I remembered my poor, scared self sitting up in the middle of the night searching the internet in a desperate attempt to find people who had been through what I was facing. And then I realized that human beings are inherently messy, and that I had to continue to be honest.

So I will tell the truth, so that other people will not feel alone with these types of feelings and reactions.

I have a lot of physical, emotional and psychological changes to deal with. Some of them will heal and resolve over time, and some are here to stay. I will write about them honestly in the days to come. I will write about them knowing that I am extremely fortunate to be here everyday. I can enjoy this Christmas holiday without thinking it may be my last.

My wonderful oncologist said she thinks I will live a long time. I’ve pondered these simple words of hers a million times. I recite them in rhythm as I walk each day. And, although I no longer wake up sweating in fear in the middle of the night, I have to acknowledge that my life has been deeply altered by this whole experience.

I’ve been wanting to write this post for a while now so that I could wish you all happy holidays and share the good news. But I couldn’t present a neat and tidy ending to this cancer experience. Is anything in life ever that clean and clear?

We can celebrate happy news and enjoy the holidays. We can hug our loved ones and be filled with gratitude. And we can learn and grow and reflect and feel sadness, too. It is okay.

Merry Christmas and Happy Hanukkah, my friends. Here’s wishing you the courage to share a host of human emotions, the ability to laugh at the little things, and an abundance of good health throughout the holiday season and into the new year!

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.”

A Little Dose of Patience

Cleo is a happy companion on our daily walks. She is only concerned with living and loving…and her next meal.

I’ve been thinking about Doris Day since I heard about her passing this week at the age of 97. I’m envious of her longevity and daring to hope for close to the same for myself. I heard her famous rendition of “Que Sera, Sera” on CBC the other day and I’ve been singing the phrase “whatever will be, will be” ever since.

It’s a good mantra for me currently, as I await pathology results from the recent surgery to remove a malignant tumour and some lymph nodes.

I’ve been walking gingerly along the trails with my black lab mix, Cleo. Each day I get a little faster and a little stronger. Cleo circles me constantly, in and out of the woods. Sometimes it’s sprinkling rain, or windy, and I’ve seen some warmth and sunshine, too. I’ve been putting my hood up and taking it down depending on the mood of the sky at each moment and belting it out:

Whatever will be, will be. The future is ours to see. Que sera, sera.

I love this song. It comes full circle in three verses. First, she is a little girl. Then, she has a sweetheart. Finally, she has children of her own. And what is the advice Doris Day doles out so melodically? Just be patient, life will happen, it will be okay.

Waiting is something I’ve been doing in spurts since February. Clocks are slower when you are waiting for the results of scans or procedures. Snow melts at a trickle. A long winter can become interminable.

But when you remind yourself that you have no control and that “whatever will be, will be,” the weight lifts a little. The present moment becomes important. You play a board game with your kids. You sit longer chatting with your husband over the dirty dishes at the supper table. You read a good book. You have lunch with your parents. You have coffee dates with your friends. You finally call your aunt for a chat. You write a blog.

I have a hard time picturing ladies from the Doris Day generation racing down the street in a minivan with a bunch of kids who are late for soccer practice and are being pressured to be on the honour roll and who forgot, yet again, to practice their piano lessons. In her day, kids went to school and played outdoors. When they wanted to play baseball, they all played together down the street. It was a different time with many challenges, and I don’t want to glamorize it. But we can learn from the simplicity of her song’s message.

I’m not saying that we shouldn’t all be productive and busy at times. There are times in life when we must spring into action, as Day herself exemplified through her animal rights advocacy work. But I’ve certainly come to see that having patience means that one must try to experience life in the moment.

Worrying is a waste of time and energy. Worry stresses our body and makes us anxious. When I start to worry, I think “Forget it, now! Whatever will be, will be.” And then I do something else.

It really works.

Thank-you, Doris. Rest in peace, beautiful soul.

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!

The Timber You’re Cutting

Photo credit: Colette Kenney

My cousin, Colette, saw this quote on a whiteboard somewhere and sent it to me recently, and it just seemed to fit so well.

What timber are you cutting today?

We all manage so much over the course of our lives, but there are times when the timber gets really thick, or the saw pile gets really deep, and we have to find the strength to get through it.

On my son’s 15th birthday this year, I walked smack into a whole wide unexpected forest. Diagnosed with colorectal cancer at 11:00 am, I was baking an apple pie at 2:00. My husband and I stumbled through the birthday supper, not looking at one another, and waited until the kids were in bed to stare at one another in crazed disbelief.

My whole life just slammed to a stop, and I was left staring absentmindedly into space or crying in dark corners between doctors’ appointments and scans. My thoughts coiled and uncoiled like a rope. Sometimes panic took the end of the rope in her teeth and ran and ran and it took all of my strength to reign her in.

This is my one of my first blog posts, and I don’t want it to be all about cancer. I want it to be about rewriting life, and cutting through the noise and expectations we shoulder everyday.

The meat falls away from the bone so quickly when things fall apart. Work – there was no way I could navigate my demanding job and deal with cancer treatments at the same time. Social commitments – all of a sudden, my friends became lifelines. Family time – yes please! Each and every interaction with my kids, husband and family became more special to me.

I can look back now only two months later and see how quickly my priorities shifted. I can also look back to that day and remember one strategy that I developed that reliably eased my stress and panic.

It was a visualization strategy, inspired in part by a book I was reading about Buddhism and then brought to life by my observation of a black speck that appeared in the water of my bath that evening. I watched the speck as it dipped and dived with the movement of the water. I moved my knee, and it swirled about in the eddy I created. I sliced my hand sideways and the speck lifted slightly towards the surface on the wave I brought forth.

Watching that speck, I realized that I was exactly the same. No more important, no less important, but caught up in waves and motions that I really could not control. I settled my shoulders down and relaxed and took some deep breaths and thought to myself that I would flow gently along with the waters I was immersed in.

Every day I did this visualization, and it brought me great relief.

What responsibility we shoulder! What great draughts of importance we gulp everyday! Recognizing our humble nature and honouring our helplessness is so freeing.

All we have is this moment in time – the past is gone and the future is yet to come. Right here, right now, we have some substance. Everything else is but a dream.