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.
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!
I had my last chemotherapy treatment this week. I am getting disconnected today, just in time to pass out treats for Hallowe’en. Tuesday was the first time my kids have been to the cancer center with us, and I think it was helpful for them to see what exactly has been going on all these months.
While I was in the hospital getting the first part of my infusion, Krista texted me and said, “Three years ago today we were running the East Coast Trail Ultra-Marathon, and now you are finishing your marathon of treatments! Wow!”
As a matter of fact, the timeline of this whole experience has been pretty interesting. Diagnosis – my son’s birthday. First radiation treatment – my Grandfather Taylor’s birthday (also, April Fool’s Day). Surgery and hospital stay – Easter time. Commencement of chemotherapy – shortly after Victoria Day Weekend and just in time for my birthday. Now I am finished my 12 rounds of chemotherapy (with no delays due to illness or infection, I might add!) on Hallowe’en, and the results of my December scan will be handed to me, hopefully, right before the Christmas break.
We’ve had a lovely fall in every way. My herbs are still flourishing on the back deck even though tomorrow is the first of November. Asher’s parents came to visit and we had a wonderful Thanksgiving with all four of my kids’ grandparents in fine form. How fortunate we are! My old friend, Robin, was in the area for three weeks and we had some quality time together. Even though I’ve often been sick, uncomfortable and fatigued, I’ve enjoyed these moments.
When I look at the simple jack o’ lanterns my kids carved after our celebratory dinner this week my heart fills with joy. They carved these pumpkins happily together at the kitchen table like they do every year, but we had a new lightness of spirit. They had just watched their mom ring the bell at the cancer center, and what could be better than that?
My oldest son began volunteering at the hospital this week and went off to school this morning dressed in costume as a doctor. I think we are all quite enamored with doctors, nurses, and pharmacists these days.
I have some healing to do now to get my body, spirit and mind back in working order. I’m not going to sugarcoat the cognitive effects of chemo – I don’t go out much because I am avoiding germs and don’t always feel well enough, but I ventured to my book club meeting last night where I had trouble understanding two-part questions. I also described Cleo as a “dog who started out as a puppy,” a comment which garnered some laughs! All joking aside; however, according to my nurses and many people I’ve spoken to who have been through this, it takes quite some time for your body and brain to rebound from these treatments.
This healing is a labour of love, and I have a fine team around me. I cannot thank everyone enough for the support, the food, the hugs, the cards, the visits, the chats, and the calls and messages.
I also have a new perspective. The day before my chemo this week, during a long, slow woods walk, I discovered upon returning to the ski trail parking lot that I had lost the keys to the van. I started to get panicky, because I was already quite tired. But then I thought, “Hey, it could be a lot worse. You could be back in hospital. You could be facing many more treatments. This is minor.”
So Cleo and I slowly retraced our steps, me scanning frantically with my blurry steroid-laden chemo vision, kicking leaves all the way. Of course the proverbial saying “this is like finding a needle in a haystack” came to mind.
I thought, “What would mom do?” and, of course, I said a prayer to Saint Anthony.
Dear Saint Anthony, Please come ’round. My keys are lost and can’t be found.
All Newfoundland Catholics know this one.
On we lumbered, me scanning and Cleo sniffing and then, there the keys were. Cleo stood next to them triumphantly and I whooped. It reminded me of the whoop I let out months before when Cleo and I were snowshoeing and I received a call on my cellphone from one of my doctors telling me the spots on my liver were just common cysts. But this week my whoop was about a set of keys, and that earlier whoop was about living versus dying. The difference could not be more stark.
As I collected my keys, smiling, I couldn’t help but murmur a certain phrase …… You know the phrase, dear reader!!!! SOME LUCKY!!
My daughter and I had the most wonderful day yesterday. We went out for lunch, did a little shopping (and laughing) at the mall, and went bowling with some friends. I honestly did not think about cancer once. Why? Because at this moment, my cancer is gone from my body, thanks to modern medicine.
After I got home from our wonderful girls’ day, I was resting on the couch checking Facebook. I noticed an article being shared around. As I read it, my heart started to pound and my hands started to shake. I wanted to scream at my innocent little phone screen. For there it was, another article about cancer survival rates being the same as they were a century ago and the “cancer industry” being all about making money and not about curing cancer. The author makes reference to a documentary that refers to the treatments I’ve had (radiation, chemotherapy and surgery) as “burn, poison, slash.” They make a claim that if people would only use natural approaches to cure their cancer, the rates of survival would be higher.
I am not a medical doctor, nor a scientist, but as a cancer patient I have done a lot of reading and research. When someone looks you in the eyes and tells you that you have stage 3 cancer, you sit up and you take notice.
When my cancer care team came up with a treatment plan for me, I researched it. The decisions they made were based on years of clinical trials and millions of dollars of research. If I had grown these tumours in my body 100 years ago, or even 50 years ago, I would be on my death bed at this point. But here I am, bowling with my little girl and taking silly pictures at the mall.
When I made the decision to undergo 12 heavy rounds of chemotherapy after already having gone through so much, I did the research first. My oncologist explained to me that the chemo would reduce the risk of a recurrence of my cancer from about 65% to 25%. I read the journal article that laid out the research that was done in clinical trials with my chemotherapy regime. The people who took part in these trials had the same cancer as me. And their outcomes were better because of this course of chemotherapy. Thankfully, now I will get the same benefit. So I will be forever grateful to the researchers, doctors and nurses who ran these trials, and the clinical trial participants themselves.
These days, I’m following immunotherapy research. If my cancer does come back in the future I may benefit from this research. As a matter of fact, I have met people online, many who are living with stage 4 cancer, who are being kept alive today by new, cutting-edge methods of treating cancer such as cyber-knife technology, targeted drug therapy, or immunotherapy.
I take a holistic approach to my health, and always have. Before my diagnosis I ate well and exercised and generally tried to take care of my mental, physical and spiritual health. Throughout my cancer treatment I have been going for massages and acupuncture treatments to relieve my symptoms and help with my general well-being. I use mediation, yoga and visualization to calm myself and deal with the psychological toll of this experience.
I believe that integrating Eastern medicine approaches into my treatment plan has helped me immensely in my recovery, but there was no “natural approach” that was going to shrink my big tumour and its’ little sidekick deposit. Cancer got radiated and shrivelled and cut out of me just before it ran rampant through my body. My insidious little batch of mutated cells were marching their way into my lymph nodes, but my surgeon and her team halted their progress. These people are my heroes, and I can’t help but get upset while reading an article that suggests that they are only in it for the money.
The article I read yesterday suggested there was no cure for cancer. But, in fact, cancer is entirely curable if caught early enough. Researchers and medical professionals know this. This is why we have screening for colon, prostate, breast and cervical cancer to name a few. Again, years of research and a lot of money has gone into developing screening tools and treatments for pre-cancer or early stage cancer, as well as approaches to prevention.
If you are interested in reading about cancer rates, treatment, or research globally, I’d suggest you start with the International Agency for Research on Cancer (IARC), which is part of the World Health Organization (WHO). One of the recent articles posted there discusses the recent rise in survival rates in wealthy countries for certain types of cancers. Of course, their information is based on properly conducted scientific research.
I hope this post helps to explain to people that, when they donate to cancer research, they are really making a difference. I also hope that, if your life is touched by cancer now or in the future, you have access to the kind of care and treatment that I have had. My doctors and nurses have been nothing but compassionate and informed. They made, and continue to make, educated decisions for me and my health, and here I am.
I still have a way to go in my cancer experience. I am not the same as I was a year ago, but I am alive. I am bowling and writing this post. I am kissing my daughter’s cheek during funny moments at the mall.
And to the “cancer industry” that yesterday’s article presented in such a scathing light? All I can say is “thank-you.”
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.
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.
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.
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.
I‘d 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.
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.
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.
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.
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.
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.
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/
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 😉
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 🙂
Bolstering myself for the strangeness ahead I make an odd lonely peace sign in front of Josh’s window. Driving to the hospital I am so normal. The afternoon traffic laughs at me. Ordinary things like driving and giving your body up to medical science.
This is the first part of my treatment program. I am freshly freckled, my little black markings perfectly aligned. I imagine my tumor, happy and safe in its fleshy bed, is unaware of the coming onslaught. I feel a little sorry for it.
One of my mom’s legendary pieces of advice – when you are facing something difficult, focus on the after.
I will have a nice supper and glass of wine later with Josh and Ozgen. I will lie on the couch and read – imagine such a luxury on a Monday! My husband and children are at home, going to after school activities and slogging through homework. I am in the ether.
In the waiting room wool and needles await. All who sit here are invited to knit a square for a cancer patient’s afghan. I realize too late I chose an over-long pair of needles. I am clumsy and my thumb joint aches. I don’t want to knit the afghan square but there are others here and now I’ve committed. I jump up too quickly when my name is called, send the partially completed square flying into the basket with relief.
Lovely technicians talk to me and I am at ease in my hospital gown. In true Newfoundland fashion, we discuss our places of origin until we discern that I grew up down the street from one of their cousins. They organize my body on the machine, turn up the music and reassure me before they leave.
The machine approaches me confidently and turns all about my body, whirring and clicking. I think lights like eyes are on me but I’m not supposed to move so I don’t really see much. The lighthearted music makes me feel celebratory.
I christen the machine Wall-E. Soon it rests and they come back. They ask me how I’m doing. I tell them my surgery is next Monday. I ask about side effects and they explain that by the time I’m able to feel side effects the surgery will be done and that will cover them up anyway.
“So go out and have a nice dinner, have some fun! Your radiation therapy is 20% finished!” they say. They fuss around me for a moment. I would be lying if I said I did not enjoy the attention.
I float out of the Cancer Center. I am still in one piece. I am still me.
I made it to the after. We all make it to the after, in our way.
So many of my friends write me jokes about getting a laser beam to my ass. I really love them for it. I kind of wish I could show them Wall-E.