Fear and I have been getting rather hot and heavy since my wonderful few days at the Surrey International Writer's Conference at the end of October.
When I introduced Clementine to the wonders of the movie The Princess Bride a few nights ago, it struck me that the past two and a half years living with my auto-immune bile duct & liver disease has been a lot like the years after Westley was captured by the Dread Pirate Roberts.
If any of you didn't spend years memorizing every line in The Princess Bride (and if not, what is wrong with you?) The Dread Pirate Roberts captured Westley on the high seas, but let him stay alive and put him to work on the pirate ship. The Dread Pirate Roberts would always bid Westley good-night in the same manner, "Good night, Westley. Good work. Sleep well. I'll most likely kill you in the morning.".
My liver disease bears an uncanny resemblance to the Dread Pirate Roberts. The thing with PSC is that it greatly increases one's risk of liver cancer and bile duct cancer. Now there are cancers and there are cancers. Bile duct and liver cancers belong in the latter category.
When I asked my PSC specialist what could be done if they found bile duct cancer in me he said, as dispassionately as a waiter reciting the specials of the day, "Usually not much. Generally all we can offer is palliative care. Death usually comes within eight months."
"Can I do anything to prevent it?" I asked.
"No."
Right then. I'll just curl up into a ball, rock back and forth, and suck my thumb.
The same specialist emailed me a letter to include in my (obscenely large) medical file in which he wrote that I am at a "tremendous" risk for bile cut cancer.
Being a writer I leapt on the significance of this word. "Tremendous," I wrote in the email I fired back immediately. "Now that is a strong word. How exactly did you mean tremendous in this context?"
He wrote back. "Your large duct PSC and the chirrotic charge of your liver mean that you are at significant, aka "tremendous," risk for bile duct cancer."
Alrighty then.
About 35% of PSCers develop bile duct or liver cancers, so I try to remind myself that I have more chance NOT to get it than to get it. Also, there are many, many other ways PSC can kill me besides cancer (which doctors have kindly spelled out in detail on numerous memorable occassions) but my mind has latched on to this fear in particular. I did the same thing when my girls were toddlers. I was paranoid about them choking on things but wasn't unnerved one jot by the idea of dropping them, parking lots, or electrocution. Minds (especially mine) + fear = weird like that.
So, part of living with PSC means that I am fearful about my PSC morphing into cancer pretty much ALL THE TIME. It is one of my first thoughts on regaining consciousness every morning, and it is that asshole of a thought that always (dressed in black and wearing a mask) who comes back to taunt me regularly throughout every day.
Every morning, after I am fed up of laying in bed feeling scared, I get up, reminding myself of something Winston Churchill said (and say what you will about the British Bulldog, he was a guy who knew a thing or two about writing and struggle and perseverance), "when you are going through hell, keep going."
Prodded by Winston's invisible cane, I make my way downstairs. I spend my days looking after my kids the best I can. I give Franck a kiss. I go for a walk with a friend. I deal with all the ridiculous administration of illness. I laugh and watch soccer games and enjoy every sip of my coffee. I write. I write. I write.
Like all PSCers, I am monitored for cancer often. I have tumor marker blood tests every six months, MRI's of my liver and bile ducts every six months and extra tests every time I am hospitalized with cholangitis. I knew I was coming up for a set of my cancer marker blood tests after Surrey. I went in to Lifelabs on Halloween Day (may as well concentrate all the spookiness in a 24 hour period, right?) and since then the Dread Pirate PSC perched on my shoulder and taunted me with lots of grim films of the future. His currency is high drama and he somehow always manages to get my attention.
I got my bloodwork back on Wednesday and my tumour marker score was actually the second lowest it's ever been (it was 102 and it has gone up to 148 before). I was pretty pleased. My specialist, however, was not as pleased and wants me to repeat it in a month. Good night, Laura, Good work. Sleep well. I'll most likely kill you in the morning...
I have survived far worse scares. In September 2013 I had an invasive exam called an ERCP where they push a scope into the bile ducts in my liver to take brushings and biopsies to specifically rule out bile duct cancer (they were that worried about it). I had to wait an ENTIRE MONTH to get the results. The Dread Pirate PSC was omnipresent during that entire month. To be frank, he was a complete douchebag.
This July my PSC had been progressing rapidly and landed me in the hospital with cholangitis for several weeks. I had to get three MRIs within a week to rule out bile duct cancer. Right after Christmas I will have to go in and get more MRIs...it is basically never-ending. Like Westley, I live with a Dread Pirate taunting me with my death every day and every night.
Still, in The Princess Bride Fire Swamp scene, Westley talks about his years with the Dread Pirate Roberts as "a wonderful time."
During these years in the face of fear Westley gained the strength to scale the Cliffs of Insanity, the resistance to withstand torture in the Pit of Despair, the ingenuity to figure out plan to storm the castle and rescue Buttercup, and most rad of all, the swordfighting skill to best Inigo Montoya. I rather suspect it was the constant threat of death that added an urgency, appreciation, and an almost superhuman focus to his days.
My fear isn't teaching me swordfighting (maybe one day, fingers crossed...), but it has pushed me to write and publish three books and get me well on my way on my fourth. Who knows? It may drive me all the way to the New York Times Bestseller List. Even if it doesn't it will make me appreciate each sip of coffee, kiss, sunset, writing session, and book launch party along the way.
