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
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.”
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.
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.
September 11, 2019 will always be etched in my memory. I was walking downtown, returning from an appointment, when I began feeling chest pains, my heart was pounding, heart rate spiked to 144 beats per minute and I could barely catch my breath. Something was very wrong. I happened to be across the street from the Calgary courthouse, where I knew they would be able to call an ambulance for me. I walked inside of the courthouse entrance, sat on a bench and then slumped to the ground. Within seconds, security was attending to me and called 911.
I was on a stretcher outside the ambulance bay waiting to be admitted, when I saw a friend of mine. She is an EMT and was talking to her colleague. I updated her on what was happening and told her my husband was on his way. She promised to come find me as soon as she returned from her next call.
In the meantime, my husband arrived and waited with me as I went through multiple tests: ECGs, urine tests, bloodwork and a chest x-ray. It was nearing the end of the school day, so my husband had to leave to pick up our 5 year-old from the bus stop and our 3 year-old from daycare. Shortly after he left, I was taken in for a CT scan to rule out a pulmonary embolism, which can be a life-threatening side effect of the chemo drugs and targeted therapy I was receiving.
When the doctor came back with the results, he sat down. I immediately knew it going to be a longer conversation than “everything looks good”. Just as he started walking me through the radiology report, my EMT friend popped her head into the room. She saw the ER doctor sitting with me, apologized and was about to leave. I called her back in and told her my husband had left to pick the kids up and that I believed I would need a friend in the room for the news I was about to receive. The doctor nodded, she sat beside me and held my hand as the doctor let me know my cancer had spread to my bones: my T11 vertebrae, fifth right rib and sternum.
My heart sank and my eyes swelled with tears. The oncology department had just closed for the day, so the ER doctor sent a note to my oncologist to follow up with me in the morning. I was then discharged.
My head was spinning and I couldn’t think straight. I texted a friend of mine to see if she could pick me up from the hospital. I also texted her I had no clothes.
If you are wondering about the “no clothes” text I sent, you aren’t the only one. Imagine being my friend who was at the hairdresser when received my text message. She didn’t know why I was at the hospital and to top if all off, she was wondering why I was there with no clothes!
Before my husband left to pick the children up, he thoughtfully asked me if I wanted him to take the bag that was sitting on the floor beside the hospital bed so I’d have less to carry back with me. I said yes. When I was discharged and attempted to get dressed, I realized the bag I told him to take had my bra, top and sweater in. I only had jeans, my socks and my shoes left with me! Thankfully, my EMT friend was still with me in the room and was able to find me a white t-shirt, which apparently hospitals usually have on hand in case they have to cut a patient’s clothes off. Despite how horrible a day that was for me, this part of my story always makes me giggle.
When I got home, I told my husband I simply couldn’t face the kids without crying. I was too shaken up and everything around me seemed surreal and moving in slow motion. That night, after the kids went to bed, my husband and I talked.
“Maybe it’s a mistake.” “Maybe it’s something else.” “It’s too early to tell. You are still getting chemo.”
I wished that was the case, however the words on the oncology report were very clear: . My husband urged me to not panic until I heard back from my oncologist the next day. I wasn’t panicked, but I needed to understand. I spent the evening on the phone with two incredible women I met in a local cancer group, emailed my oncologist and surgeon to let them know about my ER visit and then spent most of the night learning about Stage IV Metastatic Breast Cancer (MBC). It’s incurable. It’s terminal.
At 8:15 am, my oncologist called. Although she wanted to do a full body bone and chest and abdominal MRIs, she told me that now that they know where the bone metastases were, they are faintly visible on my baseline scans taken just before treatment started.
"Natalie, It doesn't look good."
After reviewing the scans from ER, she suspected I was Stage IV all along. She wants going to request a second opinion on my from baseline scans done just before I started treatment earlier that year to and have them compared to the new ones I was about to have done. In October, at my regular oncology appointment, we reviewed the scan results. As she suspected, I was already Stage IV when I found my lump eight months earlier.
The median survival after receiving a metastatic breast cancer diagnosis in 2019 is three years, up from 18 months in 1970. Click to see stats from the Metastatic Breast Cancer Network
It was terrifying knowing that I was already eight months into what was most likely the last 24 to 36 months of my life. My treatment was adjusted from one that was with and intent to cure to palliative with the hopes of extending my life as long as possible.
I’m leaving you on a heavier note than I normally do. I need to set the context as to why I went silent and haven’t posted a blog yet this year. As we near the one year mark of finding out my real prognosis, I thought the timing was appropriate.
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.
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.
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.
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.
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.
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.
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.