I’m just one of those women living with metastatic HER-2 cancer in Canada. I have a 13 year old boy, 11 year old girl, a supportive husband and two dogs. I survived stage 3c breast cancer first in 2011 with its share of trials and tribulations. I was able to return to work as an Occupational Therapist working partly in Palliative and Cancer Care.
While on our celebration vacation in 2013 I found I could no longer drink my pina coladas. Upon return home my labs showed cancer. I started a whirlwind of scans and within days I was whisked out of work and back into chemo. I had dozens of liver mets up to 15 cm and lymph involvement. I was crying and my colleague (my chemo nurse) just calmly said “You’ve got this!”
I had wonderful oncologist and amazing team. Perjeta had just been released in Canada days ago and it was my best option. We negotiated with the drug company and insurance and were able to get treatments covered. I was the first approved and second treated (by only 5 minutes) with Perjeta in Canada outside trials. And immediately the tumours shrank!
Then one month later I got a call that my contract changed and I was no longer covered for Perjeta. I would have to pay $3600 every 3 weeks. Yes this can even happen in Canada. We have Health Canada approval followed by a federal committee on cost/efficacy. Then decisions are made at the provincial level to fund. All the while a person has to wait for the drug to become available AND funded. It can take years. Women with metastatic cancer don’t have years to wait.
My immediate response was to fight. Fight like my life depended on it, which it did. I wrote letters, made calls, got media coverage, attended advocacy training for MBC with the CNBC, helped organize a huge fundraiser. I went after government, unions, insurance companies and finally my cancer agency. All said they couldn't help me despite my compelling story. They got wind of my media coverage and several weeks later they decided to cover Perjeta for all. Thankfully I fundraised enough to cover my Perjeta in the gap between May and November.
I am in the oft quoted never-ending cycle of scan and check and adjust medications. Living life in 3 months chunks. I will remain on treatment for the remainder of my life. I’ve had over 50 rounds of chemo and they just keep coming every 3 weeks. I feel horrible for about 10 days then slowly start to recover. There’s so much I want to or plan to do then I need to back off. But I keep up as many normal family activities as possible. Daytime hours preferred to the nausea filled evenings.
Last winter I developed depression and anxiety so saw a cancer psychiatrist. It took a long time resolving due to its PTSD-like nature. I also found a great art therapist and counsellor with the Callanish healing society. I worked through my heartbreak caused by cancer over about 6 sessions using art as my medium.
In June I heard the words “You have no evidence of metastatic disease.” NED. Amazing!!! And with the PTSD behind me I felt I could really celebrate. It went on for months.
This summer was the break of ‘More yes than no.” We took opportunities for my family to vacation, camp, do silly things, go places on a whim and so on. I used to want containment, rules, plans and expectations. The act of letting go of these made for a much better summer. For me, having my kids around all of the time can be very difficult. With the new “yes” strategies I made it. Now after 5 weeks of teacher strikes starting last June the kids will FINALLY go back to school! Not that I’m excited or anything. (cheeky happy dance) Now it can be “yes” about what I want out of my daily life again. Nutrition, exercise, writing, creating, working. All on my own schedule which is mandated by chemo. But I feel ready and willing to take that on.
As I try to fall asleep before my big scan I realize that deep seated fear is still there. Scanxiey and the waiting period after are really torture and should be illegal. I hope it gets easier with time. And I certainly hope I get to stay with NED a really long time. Even if it means chemo for life. I am resolved to make the best of my life despite it. I want to LIVE and not obsess over TERMINAL for the rest of my living days. My family and friends agree and support me 100%.
And so the cancer cougar is back to stay. All aggressive when needed, gracefully living the moment quietly following one track after another through the forest the rest of the time.
