I learned I was cured of hepatitis C (HCV) on May 13, 2016. Sitting alone in a hotel room in Hoboken, New Jersey, an email from Quest Labs arrived. Earlier that week, I had a blood specimen drawn to evaluate my 12 week sustained virologic response (SVR). This test is strategically drawn 12 weeks after the completion of a prescribed course of direct acting antiviral (DAA) medication. It's the diagnostic test that confirms whether or not the virus was effectively cleared. Despite the scientific evidence showing the medication I took is 98% effective for curing people with my viral genotype, I simply couldn't allow myself to entertain the notion of being cured. Having failed treatment 3 times over the previous 8 years, I was terrified at the thought being disappointed again. Those 3 failures of treatment underscored my very real belief that I would die an early death. I would not see my granddaughter grow up. I would not be around to enjoy this great gift of life. I have had HCV for at least 30 years. Because of the inflammatory properties of HCV, my liver is scarred to the point of cirrhosis and without something to stop the virus from continuing to do it's wicked business, it was uncertain how much longer this vital organ would hold up. If the results showed another failure, I wasn't sure if I could bear the weight of such bad news by myself. So I sat and stared at my computer screen for what seemed to be a long time, contemplating whether or not to open it. I bravely opened the email and when I looked, it said REPORT STATUS: FINAL. No virus detected.
Did you see the episode of Oprah (2005) when Tom Cruise announced he was in love with Katie Holmes? The one where he jumped on and off the couch, got on his knees, knocked on the floor, and danced around like a wild man?
Well, that's pretty much what I did all alone in that hotel room. I jumped on the bed, hooted, hollered, got on my knees, laughed, cried, and vowed to myself that the remainder of my professional life as a Registered Nurse would be committed to the eradication of HCV.
It wasn't until the virus was truly gone I could begin to understand just how heavy this 30 year burden had been. In many ways I had allowed HCV to limit and define me. Having a chronic disease required me to adjust my life aspirations. I lived in a state of subterranean grief, fearing that at some point my liver would fail and I would die a miserable death. Learning that the virus was truly gone made room to consider how a fully lived life might look. I knew that I'd need to retrain myself to think in a very new and fresh way and I decided that I'd take a solo cross country trip and take some time to absorb the gift of cure. I set out to answer a question I had asked for a long time; Who will I be without hepatitis C?
I left San Francisco on June 6, 2016. 93 days later, on September 5, I arrived in Raleigh, North Carolina where I had lived for 27 years before I moved to San Francisco in late 2008. Here's a map showing all the major stops I made.
The intent had been to car camp/glamp the entire way across the country but when I got to Austin, Texas, the heat and humidity was in full force and I stayed with gracious friends who kindly offered guest rooms in air conditioned houses. It took me and Marlo (my Prius) 54 days to drive from coast to coast and then 39 more days to drive up north and back to North Carolina. There were diversions, discoveries, redundancies, challenges, meetings, job interviews, and miracles. All these and more, pieces of a story writing itself.
If you ever want to come face to face with who you are, I recommend taking a solo road trip. It requires complete self reliance, agility, bravery, intuition, a spirit of adventure, and a willingness to step way outside one's comfort zone. Here are a few things I learned:
- I'm adaptable
- I'm braver than I knew
- I have a gift to connect with people from variant walks of life of people on all different levels
- I am a servant
- I am an instrument of peace
- I am at my best when I cast fear aside and lean into the discomfort that is a part of life. There is so much good on the other side of fear!
In the upcoming months, I'll be working with Project Echo/UCSF to create an initiative to serve the medically underserved in California counties identified as being highly impacted by HCV. This will involve the building of my Airstream so I can stay in the communities that so desperately need help.
The answer to the question I asked for so long is coming into focus. My deepest calling is to be a warrior in the fight against hepatitis C and am uniquely qualified as a nurse and a patient to be in this role. I have walked the walk. It didn't kill me. It created me.