I’ve said on this blog that I’ve been cured of hepatitis C, but I’m actually only 98% sure. I’ve had a 12-week SVR, but my nurse says nothing is absolutely certain until 24 weeks after treatment. That is coming soon.
In the meantime, I’m thinking of some sayings that helped me when my confidence in a cure was way less than 50%. My dear friend Marla gave me a book on mindfulness. It brought to mind some Baby Boomer slogans that helped me through the uncertainty:
“Today is the first day of the rest of your life.” –Charles Dederich, founder of the Synanon drug rehabilitation program
“Seize the day.” –translation from the Latin “carpe diem” from Quintus Horatius Flaccus, possibly taken from a Babylonian saying
“Be here now.” –Bhagavan Das
It’s coffee break time. Some 200 attendees at the Canadian Symposium on Hepatitis C have just applauded one of the many brilliant speakers. The symposium is three-quarters over, and so far I’ve learned that researchers in hepatitis C are pressing to get more people tested. But once they are tested, the jury in this field is out on whether they should be treated–yet.
Many researchers suggest that treatment wait for at least stage 3 fibrosis. That would be less of a burden on Canada’s health care resources. But it leaves those who have been diagnosed having to contend with the ticking time-bomb feeling.
I went through that feeling. It was for a very short time because, luckily–or unluckily–I was at stage three. And luckily I was cured through Gilead’s Solvaldi and Janssen’s Galexos–and no interferon. But even the short wait I had before treatment produced a creepy feeling. It felt like a tiny creature was colonizing my body, and it had fangs that could bite any time.
People are sipping coffee, and we will all be heading into a few more sessions soon. One will be a debate on the very topic I’m writing about. I’ll let you know whether one side wins.
My dog Zeena
I’m in Florida visiting my family, and all day I’ve been talking with people about dogs. I have a dog in British Columbia, and my two sisters here each have two dogs. I’ve been sitting in my younger sister’s kitchen, watching her nine-month-old German Shepherd, Wolfie, harass my sister’s four-year-old German Shepherd. Mia doesn’t appreciate Wolfie’s incessant sniffing, prodding, and galumphing. When he wants to play, she snarls at him.
My older sister’s dogs are better bonded as siblings. Marco, an enormous yellow lab, is a playful four-year-old, while Gracey, a smaller black lab, is his best friend forever. Gracey is drifting into old age but happily tolerates Marco’s puppy-forever antics. And Gracey has been sluggish lately. The vet says she may have a heart condition.
So my sisters and I talk into the night about our dogs while my tiny, frail 97-year-old mother listens. One of my sisters knows I have hepatitis C while the other does not. Neither does my mother. And the dog talk goes on while my mind stays half on the hepatitis topic. I guess it’s good that half of my sisters know about it.
If you’ve been following this blog, this may be the first time you’ve seen what I look like. I started writing about my experience with hepatitis C very soon after my diagnosis. But like a lot of people, I was shy and didn’t want to announce my illness to the world. This week I decided to post my mug shot right at the top of this page. During my treatment and up to the time I learned that I have probably been cured, I’ve thought a lot about friendship. I’ve decided that people aren’t really my friends if they think I might infect them or if they question my integrity because of my illness.
I’ve decided to fraternize only with caring, openhearted people. Having hepatitis C has helped me to be more efficient in sorting the wheat from the chaff in people. Since you’re reading this blog, I’m pretty sure you’re among the wheat.
Today I learned that a wonderful friend of mine passed away after suffering from ALS. Amyotrophic lateral sclerosis, the same disease that afflicts physicist Stephen Hawking, can attack the body slowly, as in Hawking’s case, or more quickly, as with Alicia. She was diagnosed in 2012. During her illness Alicia wrote the book A Rock Fell on the Moon. It is the story of her dad, the convicted mastermind of the Great Yukon Silver Ore Heist. Alicia raced to complete the manuscript before her typing muscles withered. The book, which I’m reading now and enjoying immensely, was published last last summer. By that time Alicia was unable to speak. Anna Comfort, managing editor at Harbour Publishing, which published A Rock Fell on the Moon, told me on the phone today that Alicia never lost her enormous spirit, and she never stopped traipsing through the province attending book events. Her husband Ben Parfitt and daughter Charlotte were at her side.
I could tell you a lot about my memories of Alicia. A favorite one happened when we attended journalism school together. We were asked to do a presentation on Baltimore journalist H.L. Mencken, and instead of the usual slides and academic talk, we wrote and performed a skit. Alicia was the sarcastic Mencken, and I was his demure wife. We dressed in period costume and drank real wine on the set, to the dismay of our startled instructor. We lost a few marks but we gained many laughs.
What does this have to do with hepatitis C? Maybe nothing, but maybe the fact that despite a daunting diagnosis, we should face life creatively, with enthusiasm. Like Alicia did.
The door to my right was open onto the treatment room, where two men and a woman rested in puffy brown-leather chairs with IV lines hanging from metal frames above the chair backs. A hallway extended straight in front of me where a string of office doors lay open or shut. Two nurses scurried past into the narrow hall. Neither of them were Maria. I was anxious to see her. I was waiting for news.
Suddenly there she was. Suddenly she hugged me. “It’s undetectable,” she proclaimed, and we smiled at each other and laughed. That was just yesterday. My hep is gone Although the standard for a cure has been an absense of detectable hep RNA in the blood 24 weeks after treatment, the Federal Drug Administration in the U.S. recently began accepting a 12-week null count as proof of a cure. I’ve reached my 12 weeks! More to come.
I’m worried. I get the results of my 12-week post-treatment viral count today. I should be happy because my last several counts during treatment showed no detectable hep C RNA. But then again, relapses happen. I think I’ll go to the beach and wash my worries away.