Mother, grandmother, librarian, military spouse, family life educator, take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. Her latest role is as the author of “Mom...It's Cancer”, the story of supporting her 27-year-old daughter as they experienced breast cancer diagnosis and treatment.

Debbie Legault

My daughter officially finished active cancer treatment, including 20 weeks of chemotherapy and six weeks of five-days-a-week radiation, on February 14, 2020. She was challenged with the typical side effects that comes with her oncologist choosing an aggressive treatment plan from the get-go because being diagnosed with breast cancer at 27 is a very scary proposition.

I use the term “typical” in the sense of typical for the types of chemotherapy and radiation she received and the ones that are typical in the public perception. Nausea … check. Hair loss … check. Radiation sunburn … check. And once those treatments were over, those typical side effects ended with them.Her appetite came back, her hair grew in, and her skin had mostly gone back to its pre-radiation color.

What isn’t part of the public perception is the lingering side effects that some people who have undergone these types of treatments deal with for months, for years, or for the rest of their lives. And that they can appear months or years later just when you think you’ve put the cancer experience in your rear-view mirror.

Four months after the last chemotherapy bag finished dripping, Adrienne called me to tell me that her eyebrows and eyelashes were falling out … again. She had watched with hesitant joy as they grew back in and would keep me updated as each new six or seven hairs would appear until they had filled back in just as they were before. On the morning she called, she had been dragged out of denial that they were falling out again by seeing a pile of them on her makeup removal pad and she was sobbing as she asked me if I had ever heard of that.

I hadn’t, but I was able to find out that it does, indeed, happen. Facial hair can go through cycles of growth and falling out for months after treatment is finished until they achieve a balance between normal growth and shedding.

Eight months after Adrienne finished radiation, a rash appeared all over her upper left chest which was the side the breast cancer was on. There was also a spot of it on her upper back where she had experienced a radiation burn. We tried very hard not to panic as she reached out to her oncologist to see him to get his opinion because inflammatory breast cancer often presents with the affected breast being covered in a rash.

The only thing that saved our sanity was that spot on her back. The oncologist diagnosed it as radiation recall dermatitis, which is a rash that can appear long after radiation is over.A biopsy confirmed it later that week. And it’s a lifelong issue that will flare up without warning.

A year after Adrienne’s third and final surgery, she found that she was struggling more and more with range of motion in her left arm. The last surgery was to remove lymph nodes in her left armpit, and despite doing everything right to ensure her left hand could climb a wall as high as her right, regardless of her diligence at doing the exercises recommended to not have her arm movement restricted, she has developed cording in her arm, a restriction that impacts everything in her day because she is left handed.

Fourteen months after Adrienne completed chemo, her doctor did blood work and was concerned about some of her liver numbers. She decided to repeat the test two months later and the numbers had gotten worse, so she ordered an abdominal ultrasound to check out her liver. We are still waiting on that one. In the meantime, my daughter has to manage having too much iron in her blood from the chemotherapy-induced liver damage. The girl who loves spinach and broccoli and whole grains now has to change her diet to lower her iron intake.

I have written many times that cancer is a never-ending story, and this is one of the biggest reasons why. The lingering and sometimes new side effects that come with the life-saving treatment people undergo to save them from cancer’s invasion constantly remind them that, “Hey, remember you had cancer?”

And I haven’t even touched on the emotional baggage that has to be carried. When you’re as young as much daughter was, if her remission holds, that’s a long time to be dealing with things that she had no idea she’d be looking at when treatment began.

And it’s a long time for me to pick up the phone and hear her resigned voice tell me one more thing is happening. I want so much for this story to have a happier ending for her than it has right now.But all I can do is raise my fist and silently yell, “Come on, universe.Enough already.” And to be very, very grateful that she’s still around so I can be angry about it.

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No matter how far you think you’ve gotten away from them, cancer’s side effects are always in your rear-view mirror, writes this caregiver.

Cancer’s Side Effects Are Always in the Rear-View Mirror

When my daughter was diagnosed with breast cancer, I did as much research as I could to find out about types of cancer, stages and the often-scary look at survival rates. My daughter was very lucky because although her cancer was extremely aggressive, she pushed to have the lump looked at even though everyone said she was “too young.”

The cancer was caught early and had barely spread to her lymph nodes when the process to kill it began.And she was also very lucky that the powerhouse chemotherapy regimen they chose was exactly what was needed to kill the body-snatching invader trying to take her over. After 20 weeks of chemo, three surgeries, six weeks of five-day-a-week radiation she is … as of now … in remission. Although you can never really “unhave” cancer, with the exception of targeted hormonal therapy to help prevent recurrence, she is for the moment walking through life with her cancer diagnosis and treatment behind her.

Along the path I walked as a caregiver, I began to engage with individuals and organizations who were having similar experiences to me and my child. I would read articles and tweets and see my daughter or I in them and respond based on our experience. As I followed more of these women and they followed me back, more and more of my feed became filled with their comments about what their lives are like and for the most part, they are living with metastatic breast cancer.

Recently, one of them spoke about how much her mother was struggling with what was going on with her and I wanted to offer words of support because I know what it feels like to have a daughter with cancer, but my hands hovered over the keyboard and I couldn’t bring them to hit the keys.

While I know what it’s like to have a child experience breast cancer, my daughter’s cancer responded to treatment. I may one day know what it’s like to wait for scan results and have it come back with bad news, but for today I get to live in a world where my child’s last scans were good ones. I get to look at her in this moment and not look at a calendar to see how much longer she has, to not wonder if she’ll make it to another Christmas.

I can recall us having a discussion early on when she was trying to make a decision about something and I tearfully said to her, “All I need you to do is live. I don’t care how you get there.” She did, and the fact that she is still here fills me with such gratitude.

But when I read those posts from young women or their families who were not so lucky, I am filled with monumental guilt because she survived when others won’t. That I get to keep my baby and others will have to say goodbye.

I am also filled with guilt because I am glad it isn’t me who has to contemplate losing my heart. I don’t think I could look someone in the eye whose child’s treatment did not work and not have them see that while I am so profoundly sad for them, that I am also profoundly grateful that my child’s treatment did.

I’d like to say I wouldn’t wish what she went through on my worst enemy, but I’d be lying, and realizing that about myself makes me feel like a bug under someone’s shoe. Cancer is simply AWFUL, and when you watch someone who has worked hard, given up much, done all the right things be slammed into the ground by cancer and its treatment, there’s a lot about your value system that can be rocked.

I even feel guilty when I hit a cancer memory trigger and it stops me in my tracks. The trauma is so real, but I still have her, so it feels like I have stopped having the right to feel how I do. I’m not a pessimist by nature, but hearing the news the first time almost ended me because I was so unprepared and I can’t allow that to happen again, so while others in our lives can fully embrace where we are now, I feel guilty when I can’t fully share their joy because I have to be ready for that bad news scan to put her back on the cancer express.

One thing for sure is that the roller coaster I climbed on two years ago is still in motion, it has just moved onto a different track. Not sure I like this one very much, either. I know the ride will stop eventually and I hope it does long enough for me to reconcile all the stuff I’ve been carrying along the way. In my daughter’s words, it’s just a lot.

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Survivor’s guilt is not just felt by individuals who overcome a deadly disease like cancer, writes a cancer caregiver. She explains how she has experienced it too but knows that not all caregivers are as lucky as her.

Caregivers Can Experience Survivor’s Guilt, Too

We are all coming out of a long winter that has felt even more difficult by the impact that the COVID-19 pandemic has had on all our lives, but there appears to be light at the end of this long tunnel.

The old saying is that spring is the season of hope, and this year it feels like even spring has a bit more bounce in her step. And while fall will always be my favorite season, the hope that comes with this time of year is something I know a lot about.

There are practical sides to supporting someone going through cancer treatment that most of us are familiar with. What is spoken of very little, researched very little and recognized very little is the long-term impact on caregivers.

For the 16 months following my daughter’s diagnosis, I was more intimately engaged with my daughter than I have been with anyone in my entire life. We did a choreographed dance that only she and I will ever understand, the steps so intricate and complicated that it would be impossible to teach it to anyone else. Pieces here and there, yes. The whole dance? Never.

My daughter was one of the lucky ones and her cancer had a full response to treatment and her condition is now what is commonly called remission or no evidence of disease (NED). The truth of the matter is, however, that once you have had cancer, you can never really un-have it again. The fat lady never sings. She just keeps doing her warmup exercises in the background and you are never certain of whether she will appear on stage.

There is “The Before,” and there is “The After,” separated by hearing the words, “it’s cancer.” This is my life now. It will be my life until it ends. Because my daughter was so young at diagnosis, we both have a long time to live in “The After” and her future is full of a multitude of tests to go through and the unimaginably stressful waiting for results and the fingers crossed that it will be good news.

I have good days, and great days. It’s not as if my world has gotten so small that I can’t enjoy a little person climbing up into my lap asking for a story to be read. I laugh, hard, with my friends and family. I weep with joy when someone I love accomplishes something they’ve been striving toward.

I look at the sun shining through my window and experience gratitude in waking up each day to all the wonderful things that are in my life.But always, hovering on the edge of my consciousness, is an awareness that part of that gratitude is knowing that she is still here. That she lived. And because she lived, I have hope.

The hope that when she is far enough away from treatment that the baby she wants so badly will come to be. And then the hope that she will live long enough to enjoy all the wonderful things that motherhood can bring. All the wonderful things that I have been given from being her Mom.

Hearing her laughter, the first time a butterfly landed on the ground nearby. Watching her tie the satin ribbons of her ballet shoes. Smelling the rain in her hair after she had been outside jumping in puddles.Seeing her flip the tassel as she crossed the stage after accepting her degree. All the wonder that makes me hold her a little bit longer than she would like whenever we see each other now.

For me, hope is a constant companion. It runs a hand across my back in times of despair, whispering in my ear that it’s all going to be OK. It tells me that because she was so young, science is going to catch up with her disease and give us all the time we want. It tells me that I will hold her baby on my knee reading a story of what a brown bear sees.

Most importantly, hope lets out a warrior yell to drown out the fear when it gets so loud I am struggling to breathe. Hope makes it possible for me to live in “The After” without needing to crawl into bed and pull the covers over my head on that last night before she finds out test results.Hope is my superhero, and it has a mighty big cape.

The old saying is that spring is the season of hope, and this cancer caregiver writes how it feels like this spring has a bit more bounce in its step.

Hope is My Superhero

I always try to find an analogy to help people understand what it’s like to experience a loved one having cancer. It’s one of those things that would have been impossible for me to understand until I heard the words, “Mom, it’s cancer” and spent a year going through the experience with my daughter.

That experience showed me that a cancer diagnosis places the person with cancer at the center of a bullseye. Caregivers will find themselves placed on one of rings outside of the bullseye depending on the needs of the patient, the intimacy of the relationship, and availability to provide support.

When I was a caregiver to my adult daughter as she went through cancer treatment, I even found that based on her needs I would be very close to the bullseye some weeks and then find myself pushed outward as side effects allowed her to live more of her life independently. I didn’t walk on eggshells, but I did constantly watch for signs that what would be sees as an act of caring one day would be perceived as me being intrusive the next day.

That degree of hypervigilance is exhausting. As the year progressed, I found myself at the center of my own bullseye. Because my family and friends were not there, they had no frame of reference to understand what I was going through. When they reached out in a caring gesture offering words of concern, their comments would make me feel more isolated and I slowly but surely found myself standing alone.

Once I was able to go back home and resume my own life, it became very clear to me that it was going to be a challenge to help others understand what I would need as I worked myself outward from the bullseye in my recovery from the experience. Because what happened to her also happened to me.

While I was with my daughter, both of our lives were full of trauma. Hers was related to having cancer and what that meant for her. Mine was standing by helplessly as her body was poked and prodded and poisons were pumped into her and once we got home doing all I could to help her manage some very challenging side effects. When I was in the moments of trauma, the emotional reactions had to be pushed away so that I could deal with the practical aspects of taking care of my daughter.

Active treatment is long over, yet I find myself frozen when I see someone with a pink ribbon keychain or see a television program where a woman was injecting herself during fertility treatment. I feel tears streaming down my cheeks as I hold a pudding in my hand.I find myself trying to explain why there are certain foods I can’t eat anymore because my mind associates them with chemotherapy. And I see my family and friends look at me as if I am crazy.

It’s over, isn’t it?Why are you still feeling this way?

I still feel this way because it’s the first time I’ve had the space to feel those feelings. I am just as surprised as they are when I burst into ugly sobs when something pulls me back into the experience. I spent a year doing all I could to not react because both my daughter and I were so afraid that we were standing on the edge of terror all … the … time.

My daughter told me before I left to go back home that I would have to be selfish for a little while to give myself time to process things. I’m not one to put myself first. But she was right.

The trauma of being a caregiver to someone I would give my life for left me with a gaping wound in my soul that needs time to heal. I’m crossing my fingers that the people who love me can have the patience to let me do what I need to so that I can step out of the bullseye. So far, so good.

A caregiver crosses her fingers that those who love her can have patience as she heals from the trauma of her experiences.

Debbie Legault

Cancer’s Side Effects Are Always in the Rear-View Mirror

Caregivers Can Experience Survivor’s Guilt, Too

Hope is My Superhero

The Trauma of Being a Caregiver Left Me with a Gaping Wound in My Soul That Needs Time to Heal

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