It was on April 1, 2019 that I announced to “the world” that I had cancer. I made it clear it wasn’t a joke. And now I am here again, 5 years later, saying almost the same thing: my cancer has progressed again and it’s not a joke.
If you have cancer, you know that you shouldn’t let unusual pains, aches or strange sensations in your body go unchecked. It has been a few months that my right hip had been getting progressively worse. I was between scans so I reached out to my oncologist. Within a few days, I went in for an urgent CT scan. The next day, I had the results. My hip was fine, but my lymph nodes weren’t doing as well. My prevascular (near the Superior Vena Cava, by my heart) and left supra-clavicular lymph node were enlarged. There also seems to be the appearance of a nodule on the upper lobe of my left lung. While the lung nodule is only “suspicious”, it is also conveniently located in the same area as the other tumours.
My oncologist is fantastic. By the time I spoke to her, she already had plans A and B. The basis of both plans is to get bloodwork, more scans and a biopsy done to get the pathology to determine the best course of action. Plan A assumes that there is no mutation and my cancer is still hormone positive. If that is the case, we will attempt to treat it with a different hormone therapy. Plan B occurs if my cancer is no longer hormone positive, in which case we look at chemotherapy, combined with ongoing targeted therapy.
This new development is less than ideal, especially since I was so excited to hit the 5 year mark of my diagnosis. This is a milestone only 22% of metastatic breast cancer patients are lucky enough to see. I was one of those lucky ones.
I am hoping my luck hasn’t run out on me and remain hopeful to be around for… well, for at least 40 years and 21 days, because that seems like a good amount of time to be around!
I could use a “pick-me-up.” If you want to buy me a coffee or contribute more through my site, I won’t object.
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!
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
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.
