As cancers develop, they mutate. If the mutations are known, sometimes there is a drug that can treat them. I paid $3K to get my tumour tissue analyzed for 500 different possible mutations. One of my mutations (called FANCL) also frequently occurs in prostate and ovarian cancer. Those populations can use the oral cancer drug Olaparib. But because provincial formularies are based on body part of origin, and not on mutational drivers, I cannot access it under the NS formulary.
Most Canadians don’t know this, but east of Manitoba, no oral cancer drugs are covered at all. Some of them come with staggering price tags: Olaparib costs $17,000 per bottle in the US. I stumbled upon a pharmacy in Bangladesh that would sell a generic version to me for $500 USD a bottle. To be able to take it, I needed to also endure a chemotherapy with toxic elements, as this was the only way the province would let an oncologist see me throughout the treatment.
And guess what? Science works! My cancer blood marker dropped significantly, and the tumour growth ground to a halt. Scans showed it has shrunk and stabilized the cancer in my sacrum. I shared my success with it with The Toronto Star, and through them with CBC.
But Olaparib has an insidious side. The vast majority of those who take it develop anemia, and those who take it for 2 years are at high risk for leukemia. I found I had a bowel obstruction virtually every cycle, which led to extreme abdominal pain and vomiting.
In early December Andrew thought I was exceptionally weak during one of my obstruction episodes. He called Hope Gillis, a nurse and friend, to come over to convince me I needed to go to hospital. She did, and with their support I was seen at the ER and admitted to Valley Regional. I stayed there for 10 days. I had 4 different bowel obstructions! And a raging infection, and not one single neutrophil anywhere in my body. They gave me IV antibiotics and fluids. A shout out is needed to the ER nursing staff. They were unfailingly kind; but I was most impressed by how much they seemed to like and support each other. Sometimes at night I would awaken to hear them laughing together. It was sweet music to go back to sleep to.
All of this was exhausting beyond words for Andrew, who had to hold down the fort at home, attend to me in hospital, and juggle his own appointments. Austin came home to help as he could. Gratitude to those folks who dropped off some casseroles – they were like gold.
It is hard to be with someone who throws up all night, hard to clean up after them, and harder still to have them in hospital. And now that I am home again and able to eat, Andrew is watchful for similar signs of collapse. There are times when poor Andrew is understandably exasperated by the messiness of my symptoms. I often feel that way about them too; I just cannot seem to stop them.
Megastar Taylor Swift has been flying through the Heavens lately. I had ignored her for many years, assuming she was just a girlie dancer. Then, one day while I was watering the plants, her song “Ronan” came on, about a mother mourning the death of a four-year-old boy. The song seized me by the throat and spiked my eyes with tears. I dissolved into a nearby chair, thinking, “I have underestimated her.”
So I dived into her discography, and learned what a powerhouse of a singer/songwriter she really is. She rivals Dylan, and indeed exceeds him in how she captures interior experiences. Swift’s accolades include 12 Grammys and 117 Guinness World Records! Her productivity, use of rhythm, and clever lyrics are astonishing. It is as if every song she does becomes an instant ear worm. I particularly enjoy her sense of humour (watch her video “The Man” for a hysterically funny treat).
Taylor Swift has a very serious side too. Today I choose her song “New Year’s Day,” from her 2017 album Reputation. It is not only seasonally appropriate, but it touches on my own struggles in a marriage doomed by cancer. The song describes the day after a successful New Year’s Eve party, in which a couple must do the mundane clearing up. The singer appeals to the partner that she is in for the times that do not sparkle, that take work and patience, and urges the partner to remember the joys of their past when confronted with an unlovely present and a troubled future. Don’t read the last page.
There's glitter on the floor after the party
Girls carrying their shoes down in the lobby
Candle wax and Polaroids on the hardwood floor
You and me from the night before, but
Don't read the last page
But I stay when you're lost, and I'm scared
And you're turning away
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day
You squeeze my hand three times in the back of the taxi
I can tell that it's gonna be a long road
I'll be there if you're the toast of the town, babe
Or if you strike out and you're crawling home
Don't read the last page
But I stay when it's hard, or it's wrong
Or we're making mistakes
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
And I will hold on to you
Please don't ever become a stranger
Whose laugh I could recognize anywhere
Please don't ever become a stranger
Whose laugh I could recognize anywhere
There's glitter on the floor after the party
Girls carrying their shoes down in the lobby
Candle wax and Polaroids on the hardwood floor
You and me forevermore
Don't read the last page
But I stay when it's hard, or it's wrong
Or we're making mistakes
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
And I will hold on to you
Please don't ever become a stranger
(To the memories, they will hold on to you)
Whose laugh I could recognize anywhere
(Hold on to the memories, they will hold on to you)
Please don't ever become a stranger
(Hold on to the memories, they will hold on to you)
Whose laugh I could recognize anywhere
(I will hold on to you)