We each have in our lives those defining moments that drastically change the course of our lives…one of mine was five years ago. After owning our scrapbook store for four years, we decided to sell for several reasons, but mostly because the long hours were taking a toll on my body, on our family (we were both working 60-80 hours a week), and financially, it was getting tougher to make a living. During the time we owned the store, we didn’t have health insurance. We both got new jobs and mine came with insurance after three months…so I went in for a complete physical…convinced that my extreme fatigue was hormonal.
On Friday, April 11, 2003, my doctor called at 6:32 pm and asked if I was sitting down. She said, “You have a potentially life-threatening disease that will need to be monitored and evaluated as soon as possible. You have Hepatitis C.” I had no idea what that was…my first thought, like many is that it’s from bad food…but unfortunately, this was much worse than that. Hepatitis C is a blood-borne disease, usually contracted through blood transfusions, unprotected sex or dirty needles. All my life I have walked that very narrow, safe road…I’ve never smoked, done any drugs, have had sex only with the man I’m married to…but in 1978, I had my ears pierced at a now defunct mall store and through a dirty, infected needle, I got Hepatitis C.
My diagnosis made me angry and confused…having always been so careful in my life choices, I now had a disease that I could give to another person…my husband and daughter had to be tested. If I cut myself, those around me had to wear gloves. The protocol with this diagnosis is to have another blood test done to confirm the diagnosis, wait 6 weeks and get another blood test, to ensure that it wasn’t a false positive (mine wasn’t). From there, I was scheduled for a liver biopsy to determine the extent of my liver damage…how much cirrhosis and inflammation I had. My liver biopsy determined that I was in Stage 3 of 4 and my genotype (strain of the Hepatitis) was a more difficult type to treat. Because of my age, genotype and weight, I was given a 35% chance of achieving a “sustained response” (remission) if I went through the year of treatment, which is similar to a chemo treatment that you administer yourself. Every person reacts differently to the treatment…some with mild side effects and some, like Natalie Cole, (who is currently going through the treatment) with severe side effects. So…five years ago this week, I began my year-long treatment for Hepatitis C. I was fortunate to have really good insurance through Kaiser (I know a lot of people hate Kaiser, but I love them and have the best doctors)…my treatment was $778 per week…but I only paid $15 per month...a huge blessing.
When you start this treatment through Kaiser, you are put into a group of six to ten people with Hep C and you attend a class and learn how to give yourself the weekly shots and daily medication, what to expect as far as side effects and you’re assigned a nurse who checks in on you once a week (more if necessary) and reports back after each blood test (done weekly). My first treatment, done on September 19, 2003, was like nothing I hope ever to go through again. Shanna was gone for the weekend to a church retreat (thank you Lord)…so she didn’t witness the horrible side effects of that first night. That first night was one of the longest of my (and Russell’s) life…fever of 105.5, chilling and shivers to the point where my muscles locked up, a headache worse than anything I’ve ever had…Russell held me through that entire long night, until his muscles were tired and aching too, as I fought to stay sane through the insane pain and agony. And so began a year long fight for my life…those severe side effects continued for several weeks until my body “adjusted” to the heavy drugs and then other side effects took their place…through it all, I managed to work 32 hours a week (because I had the insurance and needed to work).
Out of that year, I learned to accept the help of friends, to admit that I was no longer “super mom or woman”…it was all I could do to get through my work day, cry myself home and crawl up the stairs to bed…what I would have done without my husband, father and daughter, I’ll never know. God brought me to my knees that year…showed me that I needed to appreciate life…the simple things…to let go of hurts and anger…to ask for forgiveness and to admit that sometimes, just getting through the day is good enough. It was a long year, and yet, I can honestly say that it was worth it…the experience was truly life-changing…I did make it through my year of treatment and have no traces of Hepatitis C at this time (that could change, but for now, my liver is amazingly healthy).
My diagnosis was devastating and the first thing I do when something is new and unfamiliar to me is to research it…to find out as much about it as possible and hopefully, talk to someone who has been there. However, I didn’t know anyone with Hep C…until one day I was listening to my favorite radio station and the female disk jockey was talking about the American Liver Association and that she had just finished her Hepatitis C treatment…I immediately emailed her and prayed that she would have time to contact me…she did more than that…she met me several times and through my year of treatment, emailed me regularly. Susan taught me the value of just “being there” and when I asked how I could ever repay her, she told me to pass it on. Little did I know that I would be able to do just that.
In 2007, I took Stacy Julian’s online class “Library of Memories” and one day while looking at the online gallery of pages, I noticed a page titled “Me Versus Hep C”…so of course, I clicked on it and immediately started crying as I read Amy’s Hep C story. I emailed her and introduced myself and we’ve been friends since then. Amy finished her Hep C treatment a year ago and is still struggling with the disease...so keep her in your prayers. I hope to one day meet her in person (she lives in Wisconsin) but until then, she knows that I am always there to support her. Last week, she sent me an email and wrote: “If your ears ring all the time, it's a good thing, because when I tell my Hep C story to people I just met, your name always comes up and I tell them that you helped me through my treatment because you knew exactly what I was going through and you sent me the sweetest care packages. You are a true blessing in my life Kathryn. I look up to you because you are such a strong loving person. Just so you know, you mean a lot to me.”
So finding out about my Hepatitis C was a defining moment for me but learning to change and be thankful for this challenge is what made the difference. Each of us in our lives will have to face some kind of crisis…health, job, finances, the death of a loved one. I have discovered that from this life-changing disease, I needed to make necessary life changes in my attitude and life style and I discovered that one person can make a difference…from Susan who helped me through it…and then I met Amy and have had the privilege of sharing her journey and giving her the love and encouragement that others showed to me…the power of one is absolutely awesome if we will only take the challenge and be that one person for someone else…I love you Amy…and always, you are in my thoughts and prayers…
My favorite quote during my year of treatment:
Courage doesn’t always roar. Sometimes, courage is the quiet voice at the end of the day saying…I will try again tomorrow.