Category: Friends

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Survival guilt : living among the dying

I know it sounds strange that I would claim I have survival guilt, which is typically reserved to victims of a unplanned traumatic event such a car crash, a property fire, large-scale tragedies or crisis. Yet, I believe that’s what I am feeling.

I met a woman at a local breast cancer group for young women in Calgary on July 4, 2019 for group coffee meetup. Like me, she also was a young mom. Her daughter was 11 months old when I met her. She had felt a lump in 2017, but busy with life, and soon after a pregnancy and then an infant, she didn’t have time to follow up until she found it again around 7 months after she had her daughter. That is when our paths converged through the breast cancer “club”. She told me it was stage 2b.

Ten days ago, my friend died. It boggles my mind. Statistically speaking, she should have lived much longer than me. With what they consider a locally advanced stage breast cancer, with emphasis on “locally”, she should have had a 95.6% chance of surviving the next 5 years. Unfortunately, mine was stage 4 de novo, meaning it was terminal from the time of diagnosis. My chances were only 22% for that same period. This is my second friend in 3 years who were supposed to outlive me.

Aside from the stage of our disease, she and I had the same diagnosis: triple positive, with low HER2 expression. We had same treatments and compared notes almost weekly throughout our treatments, post-surgery and radiation. We were being treated by the same doctor and she was initially three weeks behind me. Eventually, she finished her treatments first because I had an anaphylactic reaction to the second type of chemo we received, so I had to pause for 6 weeks, which allowed me to get approval to get onto a different version of the drug, one made with a bio-synthetic base as opposed to Castor Oil, which was the ingredient I was actually allergic to. That’s when she caught up, and then finished her treatments and had her surgery 3 weeks ahead of me.

I understand that we each make our treatment choices. My friend had an underlying medical issue that required her, if she couldn’t live with the symptoms of that disease, to go back on her old medication, knowing they were contraindicated given their immune-suppressing nature. She started those treatments a few months after finishing her radiation treatments. She debated whether to restart the drugs knowing they were immunosuppressants and that it opened a door up for the cancer to grow again. Unfortunately, it came back for her. She immediately moved to her second and then last line of treatment. We shared the same bone mets radiation and orthopedic oncologists. We truly were “Bobbsey twins” when it came to our cancer diagnosis and treatment. Unfortunately, between her underlying medical issue and need for immunosuppressants while in treatment, and other treatment decisions she made, her cancer continued to spread while mine didn’t. Logically, these explain why she and I have had such different outcomes, I still feel guilty.

  • I think back to so many conversations we had. Did I do enough to try to convince her to listen to her doctor?
  • Why couldn’t I help her more?
  • Why do my kids get more time?
  • I can’t sleep, other times I wake up in the middle of the night, sometimes lying still in bed and sometimes crying quietly, because I have outlived two of my local friends who were in earlier stages than me and didn’t make it.
  • Why am I a unicorn? What makes me different? What do I have in me that they didn’t?

Today is her funeral. I can’t make it today because I have my kids with me and I don’t want to upset them with the knowledge that another friend of mine just died. But I don’t know that I would have gone even if my children were with their dad and I was available. I don’t know that I could look into her husband or daughter’s eye and not want to vomit on them because it makes me sick to my stomach that I am here and she is not.

Selfish? Perhaps. I think saying it’s self-preservation is more accurate.

My friend L, I’m sorry I can’t be there for your family, in particular your daughter. Know that I am thinking of you. I hope you are in a better place where there are no demons haunting you as they did here. <3

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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.

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Hello 2021! You have given me reason to dream again.

Dear 2020,

How can I sum you up? It’s easy to think only about the things “that didn’t go well”. I’ll acknowledge them because they have contributed to my growth, however I will also list all the good you have brought me.

In the “didn’t go well in 2020” column:

  • Spinal radiation aimed at my cancer tumour in my spine
  • The addition of a palliative treatment, a bone modifier, to slow the progression of cancer in my bones
  • 1.5 months of being bedridden in January and early-to-mid February, where I truly thought I would not have the energy to make it through another night and wake up to see the light of day again
  • COVID-19 lockdown
  • The end of my marriage in early spring
  • Not seeing my children for ½ of the year
  • 3 of my breast cancer friends were told their cancer had now metastasized, meaning it is Stage 4 and were also given an average life expectancy of 2-3 years
  • Lost my first friend to breast cancer since my diagnosis
  • At least 48 needle pokes
  • 22 cancer treatment infusions
  • 18 scans (MRIs, CT, bone scans, ultrasounds and x-rays
  • Having to ask my parents to use their vehicle as I needed transportation post-separation
  • Christmas was funded exclusively by my parents, my brother and Santa (of course)
  • Way too many hours spent crying
  • 42 counselling sessions to deal with “my year”

In the “good 2020 brought me” column:

  • Enjoyed (almost) every single minute I was able to spend with my children. There might have been once or twice I locked myself in the bathroom to have a few minutes to myself. 😉
  • Was a Terry Fox ambassador who helped raise awareness about cancer research
  • A true moment of pride finding out that my daughter was Terry Fox’s 6th best fundraiser in the country for the Terry Fox School day
  • Woke up stronger every day and fully recovered from the worst effects of treatment by the summer
  • Continue to participate in 2 studies relating to exercise, nutrition and general wellbeing and their effects on cancer progression
  • Learned to accept my life as a single parent with Stage 4 cancer
  • Realized that the cancer doesn’t define who I am inside
  • Am in better shape this year than last
  • Made new friends
  • Strengthened existing friendships
  • Rekindled old friendships
  • Took every opportunity to socialize with permitted outdoor physical distancing activities or through video calls
  • Shared my cancer story as it relates to dealing with living with cancer during the COVID-19 pandemic, as part of Alberta Cancer Foundation’s “Albertans helping Albertans Fund” fundraising campaign
  • Found myself smiling and laughing so much more these past few months.
  • I was reminded that I have reasons to dream again

So, my dear 2020, I won’t lie. I am glad our relationship has come to an end even though it ended much better than it started. I will now bid you “Adieu !”

And to the incoming 2021 year, I look forward to kicking off your arrival, not bedridden as I was last year, but by celebrating it with my parents, brother and a few family friends via Zoom. I can’t remember the last time I celebrated New Year’s with my parents and brother… It must have been in the early 1990s.

While some of the people in this picture are already in 2021, the rest of us will be there shortly.

With that, I will say “Hello 2021! You have given me reason to dream again.”

Happy New Year to all my readers!

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COVID-19 + cancer = community connectedness

COVID-19 is tough. COVID-19 + stage 4 cancer is even tougher. The people around me, from family, friends, acquaintances to complete strangers offering help, have made such a difference in my life. 

I found it particularly difficult accepting help from people at the beginning of my cancer diagnosis. It took a lot of work with my therapist to understand that when I perceive myself to be a burden on others, isn’t. In fact, those who offer or accept to help me are doing so because they genuinely want to. 

In a time where the top stories focus on how COVID-19 is devastating the world, we rarely hear the positive ones: stories like mine. The Alberta Cancer Foundation’s “Albertan helping Albertans” is focused on sharing such stories. Watch to find out how I feel even more connected with my community despite living through the most challenging time of my life.

From the bottom of my heart, thank you for helping me create more memories, more moments and more magic with my family.

Cancer can suck my lemons!

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From grieving to reframing – Coming to terms with terminal cancer

Here is the second part of my post. This portion talks about how I processed and eventually came to terms with knowing that seeing my kids grow up is statistically not in the cards for me.

Coming back to the evening of September 11, 2019, the day I found out my cancer had spread to my bones, I reached out to a friend who also has breast cancer. Even though I called right before dinner, she took time away from her husband and two young kids to speak with me. I talked and cried. She listened compassionately and then reminded me of another friend of ours had Stage 4 breast cancer with a similar diagnosis to mine. Between the three of us, we talked and texted for hours that night.

The next morning, after my husband got the kids off to school and went to work, my two “Breasties” sprang into action. One came to pick me up and the other made tea for us at her house. I wouldn’t have been able to drive myself; I was still in shock and my eyes were red and raw from crying and researching metastatic cancer all night. I was numb. These two wonderful ladies made sure I wasn’t alone that day. We sat outside, drank tea, and talked about living with terminal cancer, having a young family and everything in between. My head was spinning, and everything felt surreal. Life was flashing in front of me yet moving in slow motion at the same time. Words can’t describe how it felt. All I know is that these two “Breasties” were and continue to be a lifeline for me.  

Over the course of the next week, I spoke to my medical oncologist, my surgeon, was referred to a neuro-oncologist and had more scans than I can remember. I was started on a hormone therapy that made sure that my chemo-induced menopause continued for life. I also started on a second targeted therapy called Perjeta, which in combination with Herceptin, binds to the protein receptors of the breast cancer cells, preventing them from receiving growth signals.

Typically, someone diagnosed with Stage 4 breast cancer would not get a mastectomy. There were now questions as to whether or not my surgery would proceed as planned. However, new research indicates there may be an advantage to removing the primary source of the cancer. Two weeks later, I had my mastectomy and said goodbye to one of my breasts and 6 lymph nodes. Chemo had already taken away my hair, eyelashes and eyebrows, which are important to my appearance, but at least those grow back. My right breast, however, was gone forever. It’s a scar that reminds daily of how fragile my life is.

Even though family, friends and community members were helping me every step of the way, I still felt isolated and alone. I was terrified. My emotions were following the ups, downs and twists of the wildest roller coaster ride imaginable. One day I thought I was fine and coping well and the next day I was sobbing hysterically. Working with a counsellor from the Psychosocial Oncology team and my GP Oncologist, I slowly regained control of my emotions.

Next up was radiation. I thought chemo was hard, but I had no idea how debilitating radiation would be. My first round of radiation was delivered with a Linear Accelerator (LINAC), one of the most commonly used machines for external radiation therapy. By my third of my 16 radiation fractions of my treatment, I was sleeping between 12 to 14 hours a day. By the time I was done my treatment on December 10, almost three and a half weeks later, I was virtually bedridden. And, side effects hadn’t hit their peak. It usually takes approximately three weeks for the full effects to hit, which meant I spent Christmas and New Year’s in bed. [Read my blog “What I’m doing about the cancer Grinch who stole my Christmas” here.]

My time to recuperate was short. On January 3, 2020, I had the radiation mapping for my spine. Less than three weeks later, I underwent two fractions of Stereotactic Body Radiation Therapy (SBRT) to my T11 vertebral metastasis (mets). This is a relatively new type of radiation therapy, which delivers very high doses of radiation to specific tumours that are in difficult or hard to reach areas. Because a higher dose is used, fewer fractions are needed. Don’t be fooled! It doesn’t mean the side effects are any less miserable. While SBRT didn’t leave me with burned and bleeding scars like LINAC did on my chest, nor did leave my back “tanned” in the same was my face was after my chest radiation, it caused other side effects. With the dosage I received, I now have ~15% risk a spinal compression fracture to my treated vertebrae. I also experienced unbearable exhaustion.

As someone with narcolepsy, I thought I had fatigue all figured out. Apparently this fatigue is quite, though I can’t really explain how. Some days I would pee in my pants because I was too tired to get out of bed in order to get to the bathroom. Other days, I couldn’t eat unless my husband fed me. There were days I was convinced I would fall sleep and wouldn’t have the energy to wake back up. I remember crying as I told my husband and GP Oncologist about this feeling. At first, I was scared, but eventually I made peace with it, and told them I had accepted the fact that it was my time and that I wouldn’t wake up.

Because I hadn’t been through enough, I still needed more treatment. A final palliative treatment that was added to my regimen in January was a bone metabolism regulator, given to me via IV infusion (just like chemo) every 12 weeks. This treatment aims to slow the destruction of my bones by the cancer and to reduce the speed of my morbidity progression. On one hand, I want to live as long as possible. On the other, it’s still hard for me to think that the longer I live with breast cancer, the more likely I am to have debilitating pain from the bone mets. I try not to think of my life in a long-term setting anymore. I have decided to look no further than 3 months out.

My brother flew out in mid-February to surprise me for my birthday. At first, I was a little frustrated because I only starting to regain my energy. Most days, I lied in bed even though I was awake. I felt like he wasted his money to see me even though deep down, I knew that he understood. After all, he is a 3x cancer survivor himself. He gave me all the time I needed. Some days, he would come and chat with me in my bed. After a few days, I started to do small stints sitting up and talking to him. By the end of the week, I was able to spend a few hours sitting around and we even got to spend the weekend in the mountains. It was the motivation I didn’t know I needed to get out of the rut I didn’t know I was in.

It took me 6 months to get through “grieving” my old life. It was only in March that I truly came to terms with the fact that I would never work or teach again, wouldn’t finish my second Master’s degree, nor do sports or travel as I did before. I reluctantly accepted that and that I possibly would not see my son turn 5 and most likely not see him turn 6. It became increasingly clear I have a limited time to spend quality time with my family and friends. My epiphany was that I need to do exactly that while I have my health. I’ve come to realize that I don’t know how I will feel or what I will be able to physically 6 or 12 months from now. Once I accepted this new reality, I was finally able to redefine how I fit into a world where my life had completely changed. Now that I am focusing on having meaningful experiences, I know I am building lifelong memories. That’s what drove my blog’s rebrand a few months ago.

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