Do you ever stop, look around and wonder, “How did I get here?”
It’s amazing how we can focus so hard on a destination that we lose complete sight of the journey.
In January 2018, I was diagnosed with Stage 3B clear cell ovarian cancer. For a brief moment, time stands still and your entire life flashes before you.
From that moment on, everything in your life is flipped upside down. Everything changes. Following a full hysterectomy and surgery to remove the cancer tumours, I started chemotherapy in February 2018 and have been on chemo ever since. The cancer has since spread to my liver, lungs and lymph nodes.
I am a businesswoman, I am a mom, I am a wife. I am NOT cancer. This was not the destination I had in mind when I set out to pursue my lifelong dreams.
When you are diagnosed with a deadly disease you have two options: You can crawl into a little ball, separate yourself from the rest of the world and cry, “Why me?” Or you can pull up your big-person pants and fight — keep moving forward because you never know what’s behind the next door.
I chose to fight. I chose to continue to seek out my cure and to never give up believing.
Not only would I become a warrior for my life, every morsel of my endurance, strength and grit would be tested over and over again.
This is where my journey for a cure begins
I started with the Mayo Clinic in Rochester, Minn. I sent them my file to review but they determined they would have nothing better to offer than what I’m already receiving here.
Have nothing better to offer.
I was excited to hear that Penn Medicine at the University of Pennsylvania was running a CAR T-cell trial on my specific type of ovarian cancer. Then I learned that they won’t take me because I’m an international patient.
Won’t take me because I’m Canadian.
It has been one roadblock after another.
More recently, I was turned down for a CAR T-cell trial at Edmonton’s Cross Cancer Institute.
In October, I was told I was a candidate except that the tumours were too small. In December, the tumours were big enough but I was told the trial was no longer accepting patients.
Tumours are too small. Now it’s full. It’s heartbreaking.
I kept pushing on
Soon after the diagnosis, I discovered a genetic study being conducted at New York’s Memorial Sloan Kettering Cancer Center, led by Dr. David Hyman.
Hyman found my genetic mutation, PIK3CA. Even better, a drug that has shown promise to correct the PIK3CA mutation has already been FDA-approved.
Imagine my excitement when I got this news. I believed this was my miracle. We did it!
Except … no one will prescribe it to me or even sell it to me directly. The FDA approval is for breast cancer patients only.
But what if it’s my cure? It’s tragic and horrifying to think that a treatment that could change my life is out of my reach. I can see it but I don’t get access.
Ovarian cancer needs more awareness. There are simply not enough of us diagnosed to make a real impact on this disease. According to the Canadian Cancer Society, an estimated 3,000 Canadian women would be diagnosed with ovarian cancer in 2019.
And 1,900 were expected to die from it.
There are no pink ribbons or Movember moustaches. Not because people don’t care, but simply because people don’t know.
A study conducted in the United States in 2017-18 concluded that ovarian cancer is among a handful of deadly cancers that are poorly researched, given how often they occur and how many people die from them.
Statistics for ovarian cancer haven’t changed in over 50 years. It is the deadliest gynecologic cancer. According to the net survival rates for ovarian cancer, more than half of all women diagnosed will die within five years. This is an unacceptable statistic that needs to change.
I am at peace with my disease and I am certainly not afraid to die. But this is so much bigger than me and I’ve been placed in this battle as a warrior — a warrior of hope for all women.
Having cancer has turned on a light and I am so grateful to be able to see life so clearly. It has also lit a fire under me, to never give up, to stay as strong as I possibly can and to continue the search for my cure.
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