At the End of This Journey, What Lies Ahead Is a Big Maybe

When I read my husband's notes for the blog ( A Punch in the Stomach ), I felt terrible.  I realized that his words were a direct reflection of my reaction to seeing that the virus was back.  I also realized that I didn't handle it well.

I don't know why but, when Steve was looking through the results, all I could think about was the RNA level.  I think I was looking for ( and expecting ) confirmation that the virus was still gone.  When I saw it had come back, even though the RNA level was only 280, I blurted out "It's 280."  He said, "What are you talking about?"  I said, "Your viral load is 280."  Then he looked back down at the results, then back up at me, and instantly I felt like I wanted to cry, so I turned away.  Steve knew it.  He told me that it was okay.  Everything was going to be okay.  ( How pathetic that he had to console me. )

But it doesn't end there, I was silent through most of the ride home.  Still couldn't look at him.  I felt so sad and so angry.  Not angry at Steve but at the virus- if that makes any sense.  I couldn't understand why it came back, and I started to think to myself, "What did we do differently?   Must be some reason why it's coming back."  So I thought about how stressed out we've been, and I said to Steve that it must be the stress that's stopping him from fighting the virus; and when we get home, I'm looking for a psychologist.  And that's exactly what I did, I went straight to the computer.

In hind sight, I realize that looking for reasons was my way of trying to get some control over the situation. But there is no controlling this virus.  There is no instruction booklet that we can follow to guarantee results.  And at the end of this journey, what lies ahead is a big maybe.  Maybe the virus will be gone.  Maybe he'll still have the virus.  Maybe the virus will go away and come back.  The only control I have is to accept what happens, be there for my husband and move forward.

So Babe, since I know you read the blog, I want to tell you that I am so sorry for not being there for you!  And you don't ever have to feel bad for me.  Even though having the Hep can be hard on both of us, sick or well, there is no one else that I would rather spend the rest of my life with.  I only wish you felt better, for you, not for me.

The Stress is Building

With the finances being the way they are, I have been a bit stressed out.  I try not to show it, because I know that Steve feels guilty about not being able to help out.  Unfortunately, the other day, I blew it.

Here's what happened.  Last week my supervisor told me that I was eligible to work overtime. The additional money could really help us out, so I was ecstatic.  The only problem was telling Steve.  In my mind, I was anticipating that he would be resistant to the idea.

You see, when Steve became ill and unable to work, I literally became the center of his universe.  (And I totally get it, if I spent 5 days a week all by myself, I am sure I would feel the same way.)  When I am not at work, we do almost everything together.  And when I am at work, he looks forward to me coming home. Other than watching the news on TV, I am his lifeline to the outside world.  I always try to be there for him. It's something that he has gotten used to and has come to expect.  So sometimes, when I do have something to do that doesn't involve him, he's resistant.  He won't tell me not to.  He'll just come up with reasons why it may not be a good idea.

Well, we were sitting around watching tv, and I figured that was as good a time as any to mention it. And I told him that I was allowed to work overtime and that I would like to do so.  Then I asked him what he thought of it.  And he told me that he didn't think it was a good idea. He said he was afraid that I would get burnt out.  And I snapped, and regrettably I said, "You don't think drowning in bills is going to burn me out!"  The minute I said it I wished I could take it back.  Steve's face fell, and we were both miserable.

We sat there for a while in silence.  I apologized.  Then we talked about it and agreed on 1/2hr a day.

Father and Son

The holidays wound up well. My stepson came down and stayed with us for a few days.  When Steve first found out he was coming, he got totally stressed out.  Since I was working, Steve didn't know what he was going to do with Zach during the day- especially since Steve wasn't feeling 100%.  He knew he wasn't going to be able to run around with Zach, and Steve was afraid that Zach was going to be bored.  But he got all stress out  over nothing, Zach just wanted to hang out and spend some time with his dad. 

It was great seeing him.  He has really turned out to be a good person with a good heart.  He's 20 years old now.  Steve was diagnosed when he was 12.  I really don't know how,or if, Steve's being ill affected Zach.  He keeps things close to his chest and doesn't really talk about his emotions.  However, I do know that Steve harbors a tremendous amount of guilt.  He feels bad about all the things he never did with Zach.  All the time that they spent together when Steve just didn't have any energy.  All of the times that Steve missed (including Zach's high school graduation).

Spending time alone together gave Steve the opportunity to tell Zach about Hep C, the treatments, and how they make him feel.  He told Zach how he feels about him and how he wishes he could have been there for him.  And although Zach doesn't say much, I know that if he ever had any doubts about how Steve feels about him, he doesn't any longer.  

A Guide for Caring for Your Loved One with Hepatitis C

I found a guide for loved ones caring for someone with Hep C.  Thought you might find it interesting and helpful.  I did. 

The guide is on HCVAdvocate.org:  For Family and Friends Caring for Someone With Hepatitis C

The subject matter is as follows:

• Common Reactions of Caregivers 
• How to Cope
• Caregiver Stress Danger Signs
• Protect Yourself from HCV Infection
• Sexual Transmission 
• The HCV Patient During Treatment 
• Depression, Anxiety, Irritability and Mania
• Resources 

Week 12, and I'm An Emotional Wreck

At the end of the week, my husband goes for the blood test that will determine if he continues treatment.  He really needs the treatment, because his last liver biopsy revealed that the liver disease has progressed to stage 3/grade 3 (the next stage is cirrhosis).

So this week I am the emotional wreck.  I've been feeling like I could cry at the drop of a hat and I have.  Watching him go through this and wondering if he is going to be able to tolerate another 36 weeks is really getting to me.  (That is if this blood test shows that the Hepatitis C viral load is undetectable.  Otherwise, it's a mute point.  The treatment will be discontinued.)

He has been pretty miserable.  Constantly freezing, to the point that his nose starts to run, even though it's 78 degrees in the house.  He's developed Pruritus, aka the Ribavirin Rash, on his legs and his entire body itches~ especially at night.  So he is having a hard time sleeping.  On top of that, everything he eats is making him sick.  (Oddly enough, the only protein he seems to be able to tolerate is ground beef.  But he can't eat that everyday!)  And he is still getting very short of breath and dizzy.  Yesterday he walked the dogs in the morning (I was at work), and on the way back it hit him.  Luckily, he didn't try to make it the rest of the way.  He went to a staircase in front of a buiding and sat there until it passed.  When I got home last night, he told me that he feels like the treatment is sucking the life out of him.

I can't help but wonder if he is right.  I feel like he could really be endangering himself, but he doesn't want me to call the doctor.  He wants to wait until his appointment, October 13th, so he can get the results of this blood test.  I'm so afraid that something is going to happen to him, but I have to respect his wishes.  If I call the doctor, and he is taken off the treatment, he will always wonder if he would have been cured.  And more importantly, this is literally a decision that will affect the rest of his life, and that is not my decision to make.

Thank You for Your Comments & Support

Sometimes I feel so isolated.  It's really hard watching someone you love deteriorating right before your eyes; and there is nothing that you can do, because the very thing that is eating them up inside is the only hope of a cure.  But when I get your comments, I know that I am not alone.  We are not alone.  And I thank you so much for being there!!  You are the best medicine ~  for my husband and for me.  So I just want to say thank you.

The Emotional Roller Coaster that is Hep C

Tonight was shot night- week 10.  I hope this week is better than last week.  Last week was truly rough.   Steve was feeling really awful.  Constantly dizzy and nauseous.

Early in the week he became very emotional.  He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say.  He even cried uncontrollably for hours.

By the end of the week, he was miserable and frustrated,  Everything was irritating him.  And I have to admit, it got to me.  I couldn't take it anymore, and we started arguing over the smallest things.  It was rediculous.  Luckily, we realized that the stress had gotten the best of us.  We talked it out, and this week is off to a much better start.