One of the gifts I have received from blogging is the opportunity to connect with others who live with hepatitis C. As I went through my most recent hepatitis C treatment, I met people who were also in hepatitis C clinical trials, many in the same study that I was in. (At this point I am hepatitis C non-detectable, and I have a 98% chance of being cured)
One of the things about hepatitis C treatment is that when you are preparing to go through it, and then when you are finally in it, the experience of hepatitis C treatment is all-encompassing. Both the decision and the treatment feel like the most important event that has ever happened. However, it isn’t. I know this because I have been through three treatments only to find out that there are more important priorities in life.
An example happened recently. One of my fellow clinical trial companions finished his hepatitis C treatment. He agonized over details, both before and during treatment. He wasn’t sure he would make it to the end. He did. Shortly after crossing the treatment finishing line, he learned that his 29-year-old son has a very serious, inoperable brain cancer. He wrote, “For six months my constant obsession was how I was doing and I couldn’t wait to get to August 1st. My perspective is so much different now that I no longer think about it.”
I had a similar experience when I underwent treatment in 2003. The day of my last injection, my teenager suffered an extremely traumatic event. At that point, hepatitis C treatment and its results seemed irrelevant.
Another example was a woman I worked with who was very frightened and resistant to hepatitis C treatment. She was in her sixties and had cirrhosis, and eventually agreed to treatment. In the middle of treatment, her husband died unexpectedly. He was her sole support, and because of some estate issues, she lost her house and medical insurance. She had been quite sick even before treatment, yet she did not quit. She said, “When you have nothing left to lose, life is easier to live. You know you can survive even after you have lost everything.”
I have many more of these kinds of stories. What I hope you hear is that hepatitis C and its treatment feel big and scary, but sometimes there are bigger issues. My fellow clinical trial companion got it right when he used the word perspective. Hepatitis C and its treatment feel big and scary, but with proper perspective, perhaps it isn’t as big as we think it is. For example, we know that Mt Everest is the highest mountain in the world. However, when I saw it, it was from an airplane, and it looked like any other mountain. Granted, I wasn’t climbing it. But I’ve climbed three hepatitis C treatments, and truly, they weren’t as big as my mind had imagined.
Granted, perspective is easier to see with hindsight. I sure wish there was a way that hindsight could be foresight!
(A similar version of this post first appeared on Sept 9, 2013 at LucindaPorterRN.com)