Wednesday, November 09, 2005

Facing Hepatitis C

I am the person that wants to know everything there is to know about everything - or at least everything that might affect me - upfront. Many people prefer to go through life with a slightly more positive "ignorance is bliss" approach. I take the alternate "expect the worst and hope for the best" approach.
I always choose "bad news" first. I always round up when estimating how much something will cost, how long something will take, how much something will hurt. I want to know every gory detail. I hate unpleasant surprises.
My mother is the opposite, of the "what you don't know can't hurt you" generation.
When I found out I would have to have a liver biopsy so the doctor could understand the progress of Hepatitis C on my liver, I tried to gather all of the information that I could. As it turns out, I was still very unpleasantly surprised. My doctor said it would hurt for just a second. Things I read online said it was like a pin prick. My mother said it would be fine.
It hurt like hell.
Here comes the unavoidable question: by saying that my liver biopsy hurt like hell, have I potentially done ill to someone who is about to undergo the procedure, comes across my blog and is now scared shitless of what they need to face? There is definitely that chance.
I will say this: my body is extremely sensitive. In fact, even the nurse was scared by how much pain I was in following the biopsy. The way my body reacted was certainly unusual. Perhaps even more reason for me not to post this.
Only after my biopsy did my mother tell me that she had once had a biopsy, and that it had hurt like hell. She figured the procedure had probably changed since then, and that mine would probably not be as bad. My mother was protecting me, I know that, and for that I don't blame her. She is different than I am. I don't believe in protecting that way.
I am writing this blog because my husband, Gabe, and I have first begun to consider whether or not to try the Interferon/Ribavirin treatment for Hepatitis C. As I search the internet for any information on this treatment that my doctor may have omitted, I am having a very difficult time finding hard truths. I enjoy the posts of people who have gone through the same thing, and appreciate their hope and optimism. It helps. But when it comes down to it, I want to know the worst of it. That's just the way I am. I have my own filter in my head that works just fine and I prefer to filter through information myself, rather than only being fed positive accounts. In fact, my doctor told me not to search the internet, because it would only scare me. I have been searching, but I have not been able to find what I am looking for. I want the gory details. All of them.
We have not yet decided for certain whether or not to try the treatment, but the more research we do the more the "Now" side of the paper seems to outfill the "Later" side. Our doctor's appointment is on December 6, and until then we will not know anything for sure.
I have decided is that if I do undergo the treatment, I would like to record it on the internet. I will say this upfront: this will not be a cheery place simply to give hope to people living with Hepatitis C, or considering treatment. I know, that sounds crappy, but frankly there are plenty of those sites out there. And if not, just flip on the television and watch any television show that wheels out a smiling child with a terminal illness who is a role model to the whole world. I hate to say it, but I wish there were one episode of someone suffering without dignity. Someone who didn't deal with their illness like a war hero. Someone who actually looked sick and maybe even a little bit depressed, and wasn't always 100% sure everything would be okay, because that sure would take a bit of the pressure off the rest of us, trying to live up to these images of courage without ever breaking down. Maybe I want to cry. So sue me.
And now I sound like a pussy. But that is just something I am going to deal with. If I do go through with this treatment, I will try my best to recount what it is like so that if there is anyone else out there like myself who might not want the glossy version of this tale you may be able to find it, and I will trust you to use your own filter to find the medium between my grim depiction and the hopeful reality that it really may not be that big a deal.
They say everybody reacts differently to this treatment. This is only one person's account.
Keep that in mind.