My eulogy to my Tub Talk Partner

In June 2019, we quickly went from being two strangers, sitting at opposite ends of the tables for a “Breasties” coffee meet up where we only knew each other by name, to becoming close friends, thanks to Michelle, who introduced us.

On Wednesday, September 11, 2019, I went to the hospital with chest pain, two days before my last treatment. A few hours later, scans revealed my cancer had spread to my sternum, rib and spine. When I got home, I immediately called Michelle. She was prepping dinner for her family, but she took the time to listen and to introduce us via text.

We texted, then talked for hours that night. You cried with me, you listened to me, you reassured me, you validated my feelings, and you sat on the phone with me in silence, until I eventually fell asleep. The next morning, you picked me up with a latte in hand, knowing I would have had a short and restless sleep, and we went to Michelle’s.

We sat around her fire pit, now with a spiked coffee in hand. We must have been there for about 5 hours, initially all talking about our cancer experiences, our families, our hobbies, how we wanted to spend what was left of our time on earth, including the values and legacy we wanted to leave with our very young kids. I will never forget that day, with you and Michelle propping me up at what is likely my darkest day of my life.

It was that day that I found out that you hated hearing all the information I had gathered up. You didn’t like that level of detail, so I tried not to do that around you. We were “de novo ogliometastatic” breast cancer twins, something that less than 3% of the population share. Yes, I purposefully put a cancer stat in my eulogy despite knowing you hate stats. The reason I’ve added it is because I’d like to think it shows how we were, and will continue to be, kindred spirits. It’s a stat few people can say they share; I couldn’t have been more blessed than to share this fact with you.

I loved our larger “Breasties” group chat, where a core group of us who have become quite close, talked about how we could use our side effects to our advantage. One day at the Lazy Loaf & Kettle, we plotted bank heist. We had so much going for us; we were all bald, nor did we have body hair or fingerprints. There was no way they’d catch us because of our DNA! It was almost a perfect plan…

…until we realized our brain fog be our downfall. What if our driver forgot the escape route? It was simply top risky, so we opted against it. I don’t think I ever think ever laughed so much during treatments, and we had some epic belly laughs that day!

Natalie and Robin getting simultaneous treatments.

Then there were our “Tub Talks” where we sat in our baths – and let me clarify to those reading this eulogy to Robin – that we were in our own baths, in our respective homes. Chris would bring Robin drinks and my husband at the time do the same for me. We’d sit for hours in the tub, talking, and apologizing to each other regularly as we would need to refill it with hot water. And then there was the time I accidentally FaceTimed you instead of calling. You, being you, brilliantly answered the call. After laughing a lot with our phone cameras pointed to the ceiling, we decided to work with it. Within a few minutes, we propped our phones in such a way that we could only see our heads. Those were our Tub Talks. They were so special, and I will cherish them forever.

When I visited you for the last time last on September 10, you woke up with the shift change. I know you didn’t initially recognize me, so I reminded you of my name and mentioned our Tub Talks. Instantly, you remembered who I was. You repeatedly mentioned how much they meant to you too.

As I was preparing to leave, you cheerfully told me you’d call me for a Tub Talk on Friday, to which I responded “I’d love that!” You then told me you loved me, which we have been saying to each other for several years now. I told you I loved you very much too. Leaving your room at hospice felt different that day. My heart was heavy left, and I knew in those would be our last words to each other. They were the most perfect words we could have had that day.

I received a message from your family while I was heading up to Radium Hot Springs, so I learned about your death once I was back into cell service. I had a knot in my stomach, and despite knowing this time would come, I still couldn’t believe it. I know how much Radium Hot Springs meant to you, so I took some time to absorb the beauty the Kootenays has to offer. After my kids went to bed, I poured myself a stiff martini, and had a “Tub Talk” in my head in your honour. It wasn’t the same.

I miss you my friend. I love you.

Being a single mom with terminal cancer is terrifying and doesn’t pay. At all. Zero. Nada.

My kids’ music lessons cost ~$375 / month (for both kids). You can buy them a month’s worth of lessons, chip in for coffee or groceries, on settle on something somewhere in between.

5 years ago today

5 years ago today,

I found a lump in my right breast.

5 days after my 46th birthday.

And 5 years ago today,

lived Janice, Marloes, Libby, Yvette 

and Natalie.

Fast forward 5 years to present day.

4 of the women in peace may they rest,

and 1 “living while dying,” as they say.

5 years from then marks today the day,

when statistically only one would be left to be.

I hate knowing the last one left is me.

While I am clearly not a poet, I hope you can feel my pain and frustration. These women were my friends. All five of us were diagnosed under the age of 50. For the five of us, there are thousands of others in our situation. Our current Canadian Breast Cancer Screening guidelines are failing us, our families and our friends. I will continue to use my story to advocate for better screening guidelines in Canada. I will fight until I can no longer.
Getting It Off My Chest, episode 0001 – My Breast Cancer Screening Story

Did my story move you? If so, feel free to buy me a coffee or contribute to my medical bills.

My immunotherapies work together like Tre’Davious White & Jordan Poyer

Today marks my 75th Herceptin and Perjeta infusions, which means I’ve been getting these for 225 weeks, or, if you prefer, 4.25 years. I thought it would be interesting to explain, in layman’s terms, how these two drugs work together to sustain my life.

These two drugs are considered targeted therapies, both of which target my HER2 protein receptors in the triple positive subtype of breast cancer I have. Think of HER2 receptors as being little antennas poking off a cell. The two immunotherapy drugs Herceptin and Perjeta bind to these antennas, interfering with their growth and reproduction signals. However, they do so by attaching to different parts of the HER2 protein “antennae”. As a result, they are more effective at doing their job because they are hitting it at different spots. 

My boyfriend is one of Buffalo Bills’ biggest fans, so I’m going to use a football analogy. It’s as if Tre’Davious White and Jordan Poyer simultaneously their opponents’ receiver, with Tre tackling the upper body and Jordan tackling his legs. While either one of these two defensive players would possibly stop the opposing offensive player from getting a touchdown, the two of them tacking together would significantly reduce how many yards the opposing team advanced much more effectively. 

NB: While my boyfriend is a HUGE Buffalo Bills fan, the first game I watched with him was in the 2020 season. I didn’t know a thing about football, although I remember seeing players dancing after a touchdown when I saw the occasional game playing on TV in a sports bar back in the late 1990 and early 2000s. I was disappointed to learn about the  “excessive celebration” rule because I thought it made the game more interesting as a spectator. It was only a few minutes later that Stefon Diggs caught the ball, ran like crazy and managed to zig zag perfectly to avoid getting tackled. He scored a touchdown and did a small victory dance. I loved it and since then, Stefon Diggs has become “my” player. It’s also fitting that he wears #14, which is the day I was born. 

This was a long ‘nota bene” to say that I couldn’t find a way to fit Stefon into my football analogy, so I decided to diverge and write the second part of my post about how he has become “my” NFL player. I’m sad their season is over, but hope to be well enough to go to Seattle next season to see the Bills play there! 

Did you like this post? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

Photo credit

Photo 43766579 © Michal Bednarek | Dreamstime.com

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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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. 

https://www.youtube.com/watch?v=7dq0t4wbN1s

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!

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.

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.

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.

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.

Did you find the post useful for yourself or a loved one? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.