Don’t feel sorry for me. I don’t.

Since restrictions have eased, I’ve been out more and have had the opportunity to meet some new people. When they learn about my cancer, several of these individuals have told me how sorry or awful they feel for me. Many of them were even fighting back tears as they said it. The thing is, I don’t feel sorry for myself. This statement usually surprises them.

Don’t get me wrong; when I say I don’t feel sorry for myself, it’s not to say I don’t feel anything or am numb to what I’m going through. I have simply have come to terms with my diagnosis and prognosis. As a result, I have chosen to live life as if it was my last day on this earth. It truly is a choice. I could choose to let it consume me, or I can choose to take advantage of every single day I have left. I have chosen the latter, and I live this out using three key approaches to life.

  1. I’ve said goodbye to living in the past

Instead of focusing on the things I used to be able to do, I focus on the ones I can still do, have modified how I do it or new things I have learned to do.

I also process information differently than I used to. I take information and split it out the things within my control from those out of my control. For those out of my control, I simply “park” the information and move on. If it is something I can control, then I focus on what I can do about it. Many people get “scanxiety”. This is a phenomenon where individuals have very high anxiety and stress in the period of time (typically one to two weeks) after the scans are completed and when they meet with their oncologist gives them their results. Since I know there is nothing I can do in that time that would change the result of the scans, I simply keep myself busy and occupy my mind.

  1. I set short-term and flexible goals for the short term

I’m a strategist and a planner. That was what I did for a living. So this is probably the hardest aspect of my philosophy for me to live by. I used to set annual goals for myself personally and professionally. Unfortunately planning is difficult with stage 4 cancer. The past 2.5 years has taught me is that I need to be cautious about planning too far into the future. Like many cancer patients, I live “scan-to-scan”. I therefore focus on setting myself goals for the upcoming 3 months.

Something I do to make me feel like I have some control over the cancer is to help fundraise or advocate for cancer patients through various organizations. As a Terry Fox Ambassador, I do guest appearances at schools to for the annual Terry Fox runs. It helps raise funds and educate children about cancer research. I have also been profiled as a patient in Alberta Cancer Foundation’s campaigns to highlight some of their programs I’ve benefited from to help them raise funds to maintain and grow their cancer programs. More recently, I’ve been talking with Dense Breasts Canada about what can be done to help women obtain earlier screening. There is more to come on this in a few months. Even though I can’t take the cancer out of me, I feel like I am able to find ways to contribute in other ways.

My biggest goal is focus on identifying memories I want to make with my children and boyfriend and focus my day-to-day life around those. For example, this winter, there wasn’t a way that my boyfriend and I could even contemplate taking a vacation together. There were too many challenges preventing us from it: COVID-19, parenting schedules, work, etc. thinking outside “the box”, we planned a weekend where we “brought the vacation to us”. We picked a weekend, selected four beach-themed movies to watch over the course of the Saturday, cooked tropical foods such as Jamaican jerk chicken, prepared a selection of “resort beverages” and listened to reggae and Latin-American music. We also cranked the heat up in the house, wore our bathing suits and lied on beach towels while watching TV. I even put on a bit of sunscreen to add scents to the experience. We had a blast on our “imaginary vacation”. While it definitely wasn’t the same as going away to the tropics, it allowed us to have fun while creating an unforgettable, fun and playful memory.

Who doesn’t have a bucket list these days? Mine might look a bit different than others in the sense that the one I have created has less “big ticket” items that require long lead times. I only add items that are realistic and feasible given my late-stage cancer and I don’t attach any timelines to any of the items. I love adding new ideas to my list and love being able to tick items off as opportunities arise. And that brings me to the third way I focus on living my life.

  1. I live in the moment

I also look for ways to make things fun and feasible, even when circumstances are less than ideal. I think back to the day on which I had reservations to go to the Calaway Park (our local amusement park) earlier this season. It was a wet and miserable day, but my kids were eager to go and had been talking about it for a week. Instead of rebooking, we decided to make the best of it. We got fully decked out in rain gear for the occasion: rain pants, rain coats with hoods and rain boots. My son even took a pair of water goggles so he that he “wouldn’t miss anything”. We talked about all of the advantages on going on a rainy day: no line ups, no sweating, no need for sun screen, and best of all, we would not get wet on the “Timber Falls” log ride. This is by far my kids’ favourite ride. The kids and I had so much fun. They made a point of running through the splash park. I’m pretty sure the attendant was in disbelief when the kids asked if he could turn the water park on in the rain. We all ran through it fully clothed, screaming and laughing. Then we made it to Timber Falls. 2021 will definitely be the year etched in our minds as the year we did the ride 16 times. No, that isn’t a typo. We did the ride once when we got there and another 15 times in a row at the end of the day. And why not? There was no line up and my kids kept asking me to do it again. I sincerely hope they always remember me as the best mom ever for doing the ride 16 times with them in one day. And that is what I mean by being present. I only have one life, and I know that it will likely be shorter than most. It’s up to me to make the most of what I have left to live.

Calaway Park in the pouring rain and couldn’t have had more fun!

Living in the moment means I don’t let opportunities pass me by.  When my boyfriend found out The Reklaws were playing in town, we didn’t hesitate to buy tickets for the show. It was on my “bucket list” and was a memory I wanted to create with him. So we jumped at the opportunity.

Looping back to the beginning, I mentioned that I made people’s eyes tear up when telling people my story. My boyfriend was there for one of those encounters. A few days later, we were talking about the reaction the people we met had and how strong they thought I was for having the outlook on life that I have. My boyfriend loves country music so told me to listen to Tim McGraw’s song “Live like you were dying” as he said that it encapsulates my vision of life. Tim’s McGraw’s song perfectly encapsulates how I am approaching my life living with stage 4, incurable breast cancer.

I hope this blog explains why I don’t want people to feel sorry for me. Instead, I’m hoping I can inspire people to appreciate life every single day, whether you are sick or not.

Despite my cancer, my life is full. I am happy, and I can sincerely tell you that I always find something special in every day that I live. I know that when I die, I will have lived life to the best of my ability, created memories with those who are the most important in my life and hopefully inspired others along the way.

A new decade. A new life.

Thinking back to this past year, I realize how much my family and I have been through. As a result of my cancer diagnosis, our lives will never be the same. Ever. However, it should get better, but medically, it doesn’t seem like it will slow down very much, even as I stabilize and get into a routine. I expect 2020 will still keep me very busy on the medical front and I need to plan my new life accordingly.

Before jumping into how I think 2020 might play out, I looked at what I went through, and what I think the next year will look like based on routine appointments. It’s not hard to figure it out when everything is in a digital calendar!

My 2020 vision

Before starting thinking about what the next year might look like so that I can set a few goals, I decided to reread my initial consultation notes with my medical oncologist. In those, I made two lifestyle commitments to her, which I will continue doing in 2020. With that, I set myself three goals for the upcoming year.

Exercise

We discussed the benefits of exercise in breast cancer patients. I am also enrolled in two exercise. In a previous blog, wrote about the Alberta Cancer Exercise (ACE) study that I am enrolled in. You can read it here. I also was recruited into the Alberta Moving Beyond Breast Cancer (AMBER) Study. While this study does not require participating in exercise, as an active person, I will continue to follow the guidelines I was given when I was initially diagnosed with breast cancer: at least 30 minutes (ideally 60 minutes) of moderate to intense physical activity, 5 times a week, though daily activity was highly recommended. 

Exercising 6 weeks post-mastectomy.

Diet

Because I have triple positive breast cancer, I need to eat a balanced diet, though there are items that I need to avoid entirely, either because they interfere with the drugs I am using to stop estrogen, progesterone or the HER2 protein receptor from binging to my cancer. And, by doing that, it allows food to promote my cancer’s growth. So, I am committed to ensuring I continue to see my oncology dietician when I start new treatments or before adding new foods or supplements to my diet. 

Establishing a routine for my new life

This will likely be the most difficult aspect of my upcoming year. How to live life within my new reality, where I will be getting ongoing treatments every 3 weeks, understanding my new limitations, building up my strength so that I can living life to its fullest and enjoy a quality of life with my family and within my new boundaries.

I don’t expect 2020 to be perfect by any stretch. I’ve lost too many things for that. However, I do expect to be able to find some peace with what I’ve lost and look for different ways to fill those gaps.

References

Segal, R. et al. Exercise for people with cancer: a clinical practice guideline. Current Oncology, [S.l.], v. 24, n. 1, p. 40-46, feb. 2017. ISSN 1718-7729. Available at: <https://current-oncology.com/index.php/oncology/article/view/3376>. Date accessed: 31 dec. 2019. doi:http://dx.doi.org/10.3747/co.24.3376.

Tello, M. (2018, June 7). Exercise as part of cancer treatment. Retrieved from https://www.health.harvard.edu/blog/exercise-as-part-of-cancer-treatment-2018061314035

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.