What I’m doing about the cancer Grinch who stole my Christmas

I love Christmas. I always have. I love the eggnog, decorating the tree with the silver ornaments my parents gave me as an annual Christmas gift, listening to holiday songs. My daughter was also born on Christmas Day, so it’s an important holiday for me! But this year, cancer is my Grinch, preventing me from having what I consider a traditional one. I simply am physically unable to do it. And that is taking a huge emotional toll on me. Regardless, I’m looking for ways I can be involved by accepting my limitations this year and working within those new boundaries.

Throughout my entire treatments so far, which started in April, I never imagined having a Christmas like this one. Chemo went fairly well, and while it was hard on my body, I was usually strong enough to exercised daily. Everyone said radiation was a breeze compared to chemo, though admitted fatigue was toughest aspect of it. Based on the type of radiation, number of fractions (i.e. sessions) and dose I would be receiving, I was told my side effects would peak approximately two weeks after my last treatment. Since my radiation was scheduled daily from November 19 to December 10, I’d likely experience the worst of the side effects around Christmas Day. I’d have plenty of time to get ready for Christmas before the worst hit me. I had a plan! 

For those who don’t know me, in addition to fighting cancer, I also have narcolepsy. As a result, I have been living and managing overwhelming fatigue daily for decades. In fact, I have even found times where my ability to adapt to life as a narcoleptic was actually a benefit. I never experience jet lag! The exhaustion women talk about during pregnancy and post-partum were some of the best times I had felt unmedicated. And, during chemo, I managed to exercise daily because I knew when my optimal times were. So, why wouldn’t I assume that I couldn’t tackle life during radiation like I did in times where I was told I’d be exhausted? Well, you know what they say about people who assume…

Having narcolepsy makes me part of a rare “club”. Only 0.07% of the population is estimated to have Narcolepsy.

SOURCE: Smallwoood, P., Quinn, D. K., & Stern, T. A. (2010). Ch. 22 – Patients with Disordered Sleep. In Massachusetts General Hospital Handbook of General Hospital Psychiatry (6th ed.). (p. 294)

Approximately 2,700 women were expected to be diagnosed with breast cancer in Alberta.

SOURCE: Canadian Cancer Society, Statistics Canada, & Public Health Agency of Canada. (2019). Canadian Cancer Statistics 2019Canadian Cancer Statistics 2019. (p. 28) Canadian Cancer Society. Retrieved 20/12/2019 from https://www.cancer.ca/~/media/cancer.ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2019-EN.pdf?la=en 

That means that only 2 women diagnosed with breast cancer in all of Alberta will potentially have narcolepsy. It’s therefore no surprise that not one of the oncologists on my medical team has ever treated a narcoleptic patient before.

Ready for my radiation therapy

Three days after starting my radiation treatments, I had my first follow-up with my Radiation Oncologist. As soon as he asked how I was doing, I burst into tears, explaining that I was knocked out by the radiation and already sleeping 12-14 hours a day. And, that when awake, I simply didn’t have any extra energy to expend outside of getting myself to/from treatment. I was lucky if I could get a 15-minute walk in addition to getting myself from my bed to treatment and back. He confirmed that this was absolutely not normal, and after much deliberation, we are chalking it up to my radiation and narcolepsy not playing nicely together. Upon consulting with my Narcolepsy Specialist, it appears the one potential option that I had interferes with my hormone therapy, so it would be potentially life-threatening for me to take it.

With my best laid Christmas plans now unrealistic, it has taken me a while to come to terms with Christmas 2019. I cried when it was time to put the Christmas tree and decorations up in late November. They understood I was very tired, so we did it in stages over several days. I was wrecked but my kids were so excited and I’m glad I got to see the wonder and joy that Christmas brought to them. 

But decorations are only the beginning of. In my state, online shopping was my only option. As I lie in bed typing this, I am looking at the oodles of boxes that need to be unpacked and wrapped. I am too tired to even see if we have wrapping supplies left as that requires me to walk to the basement. The thought of having to it makes me cry and want to vomit. The reason for so many boxes is that six of my in-laws are spending Christmas here from Ontario. I will enlist my sister- and mother-in-law to do the wrapping for me. 

Christmas boxes that need to be unpacked and gifts to be wrapped

My parents-in-law have been here since December 14. Thank goodness! They have been taking a load off my husband by driving me to appointments, making meals and helping with the kids. Since their arrival, I have managed to sit through half-of a dinner with the family. I have eaten virtually every other meal in bed. If someone doesn’t bring me my food, I won’t eat. I’m too tired. As for Christmas events, I watched some videos my husband took of my son’s Christmas Concert as I simply couldn’t muster the energy to go. I did manage to attend my daughter’s one since it was early enough in the day and lasted less than an hour.

I started writing this blog December 7, when I realized how anxious I had become when the gift packages started rolling in. I knew then I had to reset my expectations for Christmas 2019, as well as manage my family’s expectations of me. I anticipate I’ll have to spend the majority of my time in bed and will socialize if I feel energetic enough to. I will participate in gift opening as best I can, but likely I won’t be able to be there for all of it. If I can sit down for a meal, I will. And, there won’t be any home cooking for Christmas dinner. We need to cater. I’m too wiped to even think about the details, however I believe my mother-in-law has taken this on. If she hasn’t, we will order pizza. 

I’ve never had such mixed feelings about Christmas. My love for the holiday is still here. It’s perhaps buried under lots of emotions It makes me incredibly sad knowing that everyone came to celebrate. We expected my treatments to be over and back in April, I anticipated going back to work in the new year. My reality is quite different now and I am slowly accepting how Christmas 2019 will play out. Instead of being part of the action and celebrating, I will make an effort to soak in the kids giggling and the family laughing from my bedroom, where I will likely be drifting in and out of sleep. 

Initially I was upset, but I realize that I shouldn’t be. I have an amazing and supportive family who will work Christmas around my ability to participate. I also know that by this time next year, I will look back and recognize that my body needs this rest so that 2020 can be a year I enjoyed.

Your mommy is bald and ugly!

These were the words my five-year-old daughter (identified as V) was subjected to on her bus ride home on the first day of school this year. The morning school bus didn’t show up, so in a mad rush, I dropped her off in the schoolyard, without a hat or makeup. Thinking back, I must have looked scary to children who had never seen anyone going through chemotherapy.

My daughter was quite upset that evening and told me she tried to defend me by explaining that I had cancer and my medications had made me lose my hair. She tried assuring her bus-mates that it was temporary, and my hair would grow back. She told they continued to make fun of me, so she simply ignored them. I told her that I was very proud of her sticking up for me, especially in front of many older students and I told her ignoring them was an appropriate response.

That night, I wondered what I could do to prevent address this. After mulling through many different scenarios, I called the school the next morning and asked if they would be hosting a Terry Fox run as they had last year. The Vice-Principal confirmed they were. I explained what had happened to my daughter on the bus and wanted to turn it into something positive. I asked the school would consider having me as a guest speaker. I was hoping to explain what it is like to go through cancer treatments and how it affects everyone around me. I ensured her it would be a positive approach to living with cancer. She liked the idea, so we sprang into action. Her Terry Fox lead coordinated time with the students and I contacted the Alberta branch of the Terry Fox Foundation to see if they had any materials, information or facts I could use. They did. We met, they provided me what I needed to be successful, and just like that, I became a Terry Fox Ambassador!

My approach for my presentation was to talk about Terry Fox and how I remembered watching him as a child. Then, I would talk about my experience with cancer. I thought I was as prepared as I ever was to do these presentations at my daughter’s school. Who better knew my story than me? I since I was a national team snowboarder who represented Canada on the World Cup Circuit for 3 years, I thought this “cool factor” would make me more interesting to the students. Armed with a visual presentation and numerous interactive props that I could use with the children (my wigs, head scarves, a split pea in a bag (to show the size of my lump when I found it), and the best part… a replica of Terry Fox’ artificial leg! I was ready!

So much for that theory. I quickly learned in my first presentation that the hook wasn’t the snowboarding career I thought they would be attracted to. It was the two pictures of my family: one with hair from December, a few short months prior to my diagnosis, and one from August, fully bald in the thick of my diagnosis. That wasn’t the case. What captured their attention was V. If they didn’t know her personally, they had seen her around, so they knew of her. What they cared about was I was the mom with cancer of a student they were going to school with. That was what made me relatable and the presentations more interesting to them. So, I adapted accordingly.

My next incorrect assumption was that the younger kids would have the easiest questions and the older ones would possibly be more challenging. I started all my presentations that I was open to all the questions they had. Let me tell you, the youngest children definitely put me to the test. I realized afterwards that the children in the lower grades tended to be the most curious. And, since they do not necessarily understand social norms, they had no filters with their questions. The oldest students were the ones that require a bit more prompting to open the door for conversation. These students took their time thinking about every word they were using. You could almost see the “hamster wheel turning” as they decided whether or not a question was appropriate and how to ask it without upsetting or offending me. As someone who does a fair amount of public speaking in my professional life, I was surprised at how unpredictable questions are in developing young minds. Some of the questions that stick out in my mind are:

  • My dog had cancer. He died. Do human cancer treatments work for dogs too? And what about cats? And horses? And…
  • Do you wear wigs because you are ugly without them?
  • How did Terry Fox attach his leg stump to the artificial leg?
  • Is cancer contagious?
  • You said you exercise, eat well and have never smoked, but you still got cancer. Does that mean that it isn’t worth doing all those things, because we are told that it will help?
  • Will you live to see V grow up?
  • How does cancer form?
  • How do you stop cancer cells from replicating?
  • Will I [the student asking the question] get cancer?
  • Is that your cancer in the plastic bag? (I had put a split pea in a plastic bag to demonstrate the size of my lump when I found it and suggested students put the bag under their t-shirt and see what it feels like since it’s so small and so they would know what a potential sign of cancer is.)
V and I running at her school’s annually Terry Fox run in 2019.

By the time I had done my presentations on the third day, some students were approaching me in the hallway to ask me questions they thought after I spoke to them. Some called out my name and waved to me as I was leaving the school and they saw me walking on the sidewalk beside their playground. V also told me that the two students who had made fun of her stopped being mean to her.

The following week, I ran the Terry Fox Run with my daughter. Every student had been given a sticker that identified who they were dedicated their run to. I noticed many students had written V’s name down. Initially, I thought it was only her classmates who had done this, but as we ran, many students who weren’t in her class stopped us to show us who they were running for. While some were for me, many were for V. That’s when I realized that the students understood that even though I am the one with cancer, the disease also impacts my family, my friends and our community. And I couldn’t have asked for a more rewarding validation of the impression left by the presentations I made.

My daughter’s Terry Fox sticker. She ran for me.

Being a cancer patient will help me in business

Scenario 1

I was with my husband when I got the news from my General Practitioner (GP) doctor that I had stage 3 breast cancer. He referred me to the Calgary Breast Health Program, where I would meet with a surgeon and later, an oncologist. I did not know anything about breast cancer so before leaving, I asked my GP for a copy of my all of my results leading up to the diagnosis.

When the Breast Health Program called a few days later, an appointment was scheduled for the following week. I asked them what I should expect at my first appointment. I was told that I would meet my surgeon, who would discuss and agree on a treatment plan. Now that I knew what the agenda was, learned as much as I could about my diagnosis. I had about one week to research and understand as much as I could about my diagnosis and potential treatment. That included making sure I understood everything that was in my mammogram, ultrasound and biopsy reports. I only used reputable medical sources, cancer organizations or received information from individuals in the medical field from within my network to do my research.

Once I had a better understanding of my diagnosis. Then, I looked up typical treatment protocols for the type of cancer I had been diagnosed with. While I read protocols from other Canadian provinces, I ultimately made sure I had read every breast cancer document available on the Alberta Health Services Cancer Guidelines site. Having a ‘pre-med’ university background helped me with my understanding of a lot of the materials, and I found that some of the other Canadian jurisdictions presented the information in a more patient-friendly way. I found the Alberta site to be quite technical at times and geared more towards the physician than the patient. As I went along, I made sure I noted any questions I had.

By the time I met (accompanied by my husband for moral support) with my surgeon and oncologist, I was prepared for our conversations. I understood what she were telling me and I wasn’t overwhelmed with the information they were giving me. Because I was had done my research, I was able to ask well-informed questions, and I referred back to the questions I had jotted down to make sure I hadn’t missed anything. As a result, I was able to confidently make a decision on my treatment plan without second-guessing myself.

Lesson

For my appointments, like in business, if you are being invited to a meeting, ask for expected outcomes of the meeting. Ask if pre-meeting documentation is available (if applicable) and prepare yourself accordingly. If you are the meeting leader, send out an agenda and lay out the expectations of the meeting. If pre-work is required, ask for it at the time the meeting is set up. Too many times over the course of my career have I have found meetings to be unproductive because expectations weren’t set, data wasn’t available and subsequent meetings were then required.

Scenario 2

Once treatments started, I had many routine appointments for bloodwork, cancer treatments and follow-up appointments with my oncologist. Obvious patterns quickly emerged with each appointment type. Nurses always asked the same questions. So, instead of waiting for the nurse to ask them, I come in prepared with the information typed up. While that sounds like work for me, it actually isn’t. For example, I have to report all my side-effects, so I simply log them in the calendar notes for that specific appointment. Similarly, I do the same with all the medications I take. And, usually I always have something that I need from my doctor or nurse, so I have a list of requests, such as refills, questions or concerns I want to discuss. This makes it super easy. I simply print off a copy of the calendar appointment and give that to the nurse before meeting with the doctor. I also have a copy of it on my phone that I can also refer to.

As a result of doing this, an appointment that used to take 45 minutes, mostly driven by a nurse asking me questions, The nurse takes a couple of minutes to read them and ask any questions. She usually reads as she takes my blood pressure, so this easily shaves 5 to 10 minutes off my appointment time. She takes my printed notes, attaches it to her form and reviews it with the doctor. As the doctor examines me, we discuss my questions and concerns, since she already knows what they are, and before I am even done with my doctor, the nurse comes back with any needed prescriptions. As a result, my appointments are now about 30 minutes, instead of the initial 45 minutes.

Lesson

Look for opportunities to be more efficient with the routine or operational tasks, which allows you to focus on the most important items that need to be addressed. At the end of the day, it’s about being more productive and efficient with the time we have.

Cancer’s impact: it’s a family affair

What I have learned as a cancer patient is that the cancer isn’t isolated to me. It has tentacles that reach out to my closest support team: my family. What happens to me impacts them. The decisions I make impact them. How I act impacts them. It truly is a team effort.

While I intuitively understood this, I didn’t understand the extent to which it was true. It wasn’t until my parents, who drove all the way from Mississauga to help my husband and I during my treatments, sprung into action. Even though they looked after the all things related to meals, laundry and acted as my chauffeur and support-person when my husband was working, my husband was still running ragged taking care of the dogs and kids so that I could have the space to rest after my chemo treatments. 

Prior to starting my treatment, we put a plan in place to tell my children. I spoke to my daughter’s teacher in advance and she lent us a book. So, during spring break, we read them “Maman a le cancer” (Mom has cancer), a book specifically aimed at young children. Click here for a list of books explaining cancer to children. Our youngest understood that I was sick, but that was the extent of it. However, our eldest really took it in and started implementing some of the suggestions given in the book to help mommy and daddy. It focused on the team dynamic and she picked it up. She asked if I’d dye my hair pink before it fell out, which I did. Since she seemed to want to be a part of what I was going through I decided to leverage that.

Before shaving my hair off, I picked up some chemo caps. I bought a few extra for the kids: matching daytime and nighttime ones for my daughter and I, and a cute, versatile one for my son. They seemed to like wearing them on occasion, be it to go out or just to sleep. They came to play read or play cards with me in bed when I was too tired to play with them after school or camp. However, about half way through my treatment, something changed with our daughter. 

Even though we explained to the children (aged 2.5 and 5.25 at the time of my diagnosis) that mommy was sick, we didn’t know how my diagnosis and treatment would impact them. And, it wasn’t until several months into treatment that we started seeing behavioural changes in our daughter. Over the summer, she was placed with 6 and 7 year olds in her swim camps since she was too strong a swimmer for the 4 and 5 year old activities. I also had an allergic reaction to the chemo drug I was switched to in the second half of treatment and I became very spent much more time in bed as a result of the severe side effects I had. These two things happened around the same time. I’m not sure if either of these were triggers, however she started asking questions about what she and the family would do when I died. She began having nightmares where she was being killed by insects. She sometimes cries and can’t explain why. And, last week, she asked me if she will get cancer because of I have it. 

What horrible thoughts for a five year-old to be worrying about. She should care about what she will draw with her chalk on the sidewalk, who can pick up the most rings from the bottom of the pool and who will find who in hide-and-go-seek. She shouldn’t be worried about her or I dying! So I started digging around to see if we could provide her with better support as clearly, what we were doing wasn’t enough.

Luckily, there are has some fantastic resources at our disposal, and each have a different role to play in ensuring that myself, my family and any additional caretaker has access to support and resources. Here are the ones that I have found useful for my family and I: 

Alberta Cancer Foundation‘s (ACF) mission is “To create more moments for Albertans facing cancer by inspiring our community to give to innovation in detection, treatment and care.” They provide patients with nurse navigators, which I have extensively used. They provide financial assistance. Let’s face it… having cancer isn’t cheap! My post-chemo injections were $1,700 per injection! Thankfully I have coverage. ACF also funds research and other cancer-related non-profit organizations in Alberta.

Wellspring is a Canadian-based non-profit organization that provides a multitude of different programs to those living with cancer. Their programs cover the gamut, from exercise, art, mindfulness, educational seminars, etc. We will be taking advantage of the “Adventures in Art” with the kids. All four of us will go to the sessions starting in October (September was already full!) and I know the kids will love making stamps, a treasure box and a holiday banner. They also have a great cancer resource library, with books for all types and stages of cancer, for adults and kids alike. 

In Alberta, cancer patients have access to Psychosocial Oncology, a department within Alberta Health Services (AHS), which connects patients (and extends to their families) with psychologists, social workers and counsellors with the goal of helping us navigate the stresses caused by cancer, the treatment and recovery. Best of all, it is a free resource and is accessible via self-referral. 

I’m also very thankful that my company has an Employee Assistance Program (EAP) as part of my benefits. With it, my dependants and I have access to custom, solution-focused. short-term support, advice and information relating to a specific issue. This is an employer-specific benefit and unfortunately isn’t available to everyone. Check with your employer to see if this is included in your benefits package.

Every cancer, every patient and every one of their situations is different. However, there are a number of resources available to cancer patients. If you aren’t sure what is out there, ask your medical team or reach out to your local cancer society. They can help guide you.

Blepharitis & Dry Eye Syndrome

Blepharitis and dry eye syndrome from my treatments have been particularly bad the past few days and my doctor prescribed eye mask isn’t cutting it.

They sting so badly. I have two sets of prescription eye drops, one OTC drop and a prescription eye gel for night time. Add in the eye mask twice a day. My eyes have been like this for about 1.5 months and we keep trying different things.

Only 6 more chemo infusions to go, then maybe my eyes will start recuperating!

Practice makes perfect

This is what happens when you get distracted by kids and when an inexperienced person tries drawing eyebrows… One is much higher than the other.

Take 2… though V said I shouldn’t draw eyebrows because I don’t know what colour my hair will come back as. And, these are too dark apparently!