A year ago, I hadn’t started treatment yet. It was just before my birthday and I was at the reset starting line of fighting stage 4 cancer that had spread throughout my body. A whole year has passed. I’ve had three lines of treatment drugs and I was monitored every three months. What we continued to see was that everything stayed stable except those god damn lungs. My latest CT scan was this week. Glass half full version: no new growths especially in the organs which is when things turn really serious (there’s a new level of relativity with cancer…like stage 4 isn’t serious enough, right?).
The glass half empty version: the nodules in my lungs are resisting treatment. Some have doubled in size since March and one of my lymph nodes has increased as well which causes pain under my left arm. The treatment is not working and I have disease progression.
There is a clinical trial at Princess Margaret Hospital in Toronto that is studying my specific type of breast cancer which is called metastatic HER2+ breast cancer, (one in 10 breast cancers are HER2+). I met with some pretty amazing, smart, dedicated folks there yesterday and we have begun the process of entering me into the study.
There are certain tests that have to be done to ensure my eligibility. One of the tests looks at liver function. Since I started the Ketogenic diet three months ago, I have found significant success in that I have no more side effects after treatments and I’ve lost 38 pounds. I feel great and strong and as if I have never had a thing wrong with me. However, sometimes with the Keto diet, it can impact liver enzymes. My liver values are high enough that my oncologist thinks they will not meet the criteria for the trial. The very change that has brought me increased health and wellness could make me ineligible for a medication that could be life-saving. The early research in this clinical trial shows an 84% success rate in the trial drug which is administered with two other drugs that I will be on no matter what, as the next line of treatment. I won’t go into details about how the drug works but it is very different from what I have had so far and essentially communicates to the cancer cell to stop growing.
The doctor leading the clinical trial specializes in metastatic HER2+ breast cancer and only has about 10 patients under his care on the trial. Even if I don’t make it into the study, I have decided I will be transferring my care and treatment to Princess Margaret to have a better chance of positive outcomes and increased access to services and treatments that are being researched at Canada’s leading cancer hospital.
There is a gift in being introduced to this trial, whether I am accepted or not. I believe that I’ve exhausted my time at Juravinski and while I am grateful to the many people there who have guided my care over the past five years, I am excited to take things to the next level. I mean heck, Princess Margaret has free WiFi, a daily cap on parking (something that drives me crazy in Hamilton – it’s highway robbery for the most vulnerable people), and a Patient Portal where I can access every scan, doctor’s note and appointment in real time.
It will mean much more travel (back to back days of appointments and treatment at PMH), costs and some treatment options that are not covered by the government. Did you know that in Ontario, if you were already on one cancer drug and you go off of it, the government will not pay for you to go back on it? And yet, the clinical trial requires me to be on a drug I was on in the past (Herceptin). The nuances of navigating the system are a rabbit hole and I have such empathy for those without the means or awareness to fully understand and manage their own care.
The silver lining is that hopefully, I’ll reach my next birthday with very different outcomes. I will move on to a heightened sense of care, research and treatment options that will bring about positive changes. Being part of a study means a far more rigorous schedule of diagnostics that will ensure that the most minute changes are caught very early and can be treated effectively.
Turning 44 next week will be about continued advocacy for my well-being, a growing network of experts and opinions and above all, another year of living oh so wisely, with all the things that matter at the heart of all I do and letting the love and generosity of my amazing family and friends spin their web of protection and comfort around me. There is no greater gift than that.