There's a symptom Hep C that one talks about. But I have it!

I guess it's a common symptom amongst any serious illness...it's called "What the hell is that and does it have anything to do with the Hep C ?"

I don't know if I've been just ignoring a lot of the signs in my body or if the symptoms are just now showing the Dragons ugly head.

Knowing me....I ignored.

The pain in my back I know is probably my liver. But what the hell's up with my tongue? The whole top of it is sore and has been for days now. I can't pin point when it began but it's not going away! I hate to go to the Doctor over my Tongue...but if it doesn't go away soon I guess I'll have to.

The achy and tired feeling that I have in the morning now has a new meaning. My shear exhaustion in the evening is more than my growing older.

These are the things that I have to admit....I feel like shit most of the time. And while I try to ignore these things, I know what they mean. I just have to remind myself that one day I will feel better!

Jimmy is on his way to Ocean City this Thursday for a weekend golf tournament and I'm working to finish a painting that I was commissioned to do for a retiring State Cop.

Did I mention that I paint? Acrylic paint. I usually paint motorcycles and leather jackets. Every once and a while I paint on canvas. I'm not the greatest painter....but I try.

The kitty on the chair is my side kick "Hitch". He was a beautiful first year dating anniversary gift from Jimmy. It was so wild that I wanted a grey long haired kitten and when he went to the Humane Society the only kitten that they had was just that.

I named him "Hitch" because the first date that Jimmy and I ever went on was to a movie called Hitch.

He's my baby!

I'm taking the kids to Seaside Heights, N.J. for a minny vacation over the weekend (after I finish the painting). They're so excited to go and I'm getting excited to spend some quality time with them. It's gonna' be so much fun!

.....And the summer continues.

Monday night Jimmy called a bartenders meeting and broke the news of my Hep C. There are and will be too many questions going around about my health and he felt that it would be better if the Bartenders and Bouncers heard it from us.

He did a nice job explaining whats happening. While Patty (my good friend and a Bartender) became weepy eyed I made sure my back was to her. I can't cry anymore. I have to keep my strength for the fighting this thing. But still the tears are there. I just keep fighting them back.

Is this going to get any easier?

Yesterday Jimmy traveled to Harrisburg where he resigned his seat with State Tavern Association. Next month he'll travel to Milwaukee to resign from the Nation Association. He decided that his priority is here with me while I go through therapy. But he loves politics and I'm affraid he's giving up something that he'll miss very much.

Part of me feels loved and cared for....the other part feels guilty because I don't want to become a burden on him. I don't want to be the reason he's quiting these things.

So many things have changed over the past few months and so many more things will change in the upcoming months.

I take a deep breath and keep going forward....

There is something good that happened last night! My 21 year old son, for the first time in his life, brought home a girl for me to meet!! That's unprecidentented! He's never brought home a girl before!

He's always told me that when he meets one worth bringing home he'll bring her. Now that he finally has I'm floored!

She's beautiful! She's smart and she has a wonderful personality. She's also been my son's best friend for about the past 5 or 6 years. He's claimed over and over again that they are "just friends". But something always told me that it was more.

I'm so happy for him!

Ok....So I survived the golf outing! I am so sore this morning that I learned a valuable lesson, Golfing is more physical than I thought!!

Jimmy and his buddy where great. Smiling when I missed the ball completely and patting me on the back when I hit it, even when I hit it completely off course! I guess they just got to the point where they were happy to see me hit the damned thing! lol

I think I'd like to learn more. Maybe we'll go to the driving range for practice.

All and all it was great and so were the guy's for putting up with me!

There are a few things that I'm having to recognize and finally admit.

Fatigue. It's hard on me because I've always been the "on the go" type of person and now I find myself completely wiped out early in the evening or late afternoon. Yesterday at about the 11th hole I began wondering to myself if I'd make it all the way.

By the time we were done I was ready to find a place to lay down.

Fatigue is starting to control what I can and can not do....and I know it's just going to get worse.

I hope not... I want to enjoy life from somewhere else other than my couch.

The second thing that I have to realize is that the fatigue makes me nauseous. I'm trying so hard to gain weight before I end up on chemo and loosing it....

The last thing that I have to realize is that drinking is now out of the question! I had a couple of beers yesterday ( I know I'm not supposed to, but I wanted to treat myself), they didn't help either the fatigue or the nausea! It was so much more worse because of them!

So....rest when I'm getting tired and NO DRINKING!!!!

lol....I am becoming more determined to kick this little Dragon's ass!!!

uhhh?

I don't find myself to be a stupid woman, and I know I'm new at all of this....but you would think that with my lab results in hand I would be able to decipher them!

Well it beats the hell of out of me!

When I spoke to my doctor on the phone he said that my viral load was "well over 4 million".

I've got copies of my lab work from my family Doctor. Went home and tried to look the results up on the net.....that's where confusion sets in. I just want a straight answer....how bad is this?

I won't be seeing the Doctor until July and I just don't want to wait.

Looking it up, there are formula's to calculate and explanations that seem to go in circles. It'll drive ya nuts just trying to figure it all out!

Here's what the lab work says :

HCV RNA by PCR, Qn rfx Geno
Hepatitis C Quantitation
3,970,000 IU/ml
HCV Log10 6.599 log10 IU/ml

Hepatitis Geno Type 1b

Ok, so I get the 1b part.... Is the viral load 3,970,000 IU/ml? Whats log10 and 6.599? And why would my Doctor think that the viral load is over 4 million when it looks to me like it's just under that?

Is this all bad or is it ok or good? Is the viral load medium or high? I know it's not low...but where does it stand in the total scheme of things?

Confusion sets in and my search for an education continues.

LOL.....I never said I wanted to be a doctor!! I rather like my peddy desk job, but if I have to carry this Dragon around with me I'd like to know how much she weighs and just how bad her temper is!

On the brighter side of life,today I hit my first golf ball (I've been corrected on the proper way to say that...I'm now proud to say that I know that you don't Shoot a golf ball...you hit it! :-) ) and tomorrow I'm actually playing in a full fledged golf tournament!!! lol....can you believe it! It seems like it going to fun! Jimmy and his buddy need a player on their team to make four, so he asked me!

O.M.G. What on earth was he thinking!!!!!

Wish me good luck! (hopefully I survive......poor Jimmy! Hopefully He survives!!!!)

Well up comes another reality. I'm afraid that I could loose my insurance.....

After 9 years of working for my company my boss is thinking about putting me as part time while I go through the chemo. And hiring someone to pick up the hours.

We don't know how I'm going to react to chemo yet..... I guess they just want to plan ahead.

I don't want to go part time. I've made it back to work 2 weeks after a hysterectomy. I've made it into work when I've been sick with colds, etc. The only time I've really missed work in 9 years was when I was either hospitalized and twice for migraine headaches or once for an abscessed tooth that swelled from my jaw to my chest. If I have a Doctors appointment I've try ed to schedule them off of work hours and then when I couldn't....I'd make it back to work as soon as I was done.

"Maybe I should have hid this from work.... maybe I should not have told them."

In my Company part time means loosing my Insurance. I can't afford chemo without it. I don't know anyone who could....

I told Jimmy last night that maybe we should consider not going through the therapy. But he knows my Liver won't survive much longer than a few years....he said it's not an option. I know it's not.....but I also know that without insurance we can't do it.

"I just don't know how much more "news" I can handle this year. I just don't know.
I can not go part time and loose my insurance."

I can not loose my job. As much as I hate the place sometimes....I love it and I love working with my best friend. For 9 years she's been my sister and at times my mother. I don't know how I could go through the next year without her across from me giving me strength and support.

I didn't expect this to be piled on top of everything else.

"Once again....I'm scared"

My future with Hep C becomes even darker and I haven't even started chemo yet.

Yesterday was a busy day. Got up in the morning bright and early. Did my regular morning stuff and out the door I flew. Went all the way down to my Doctors office believing that I had a 7:30 appointment with him. Walk in and the Nurse looked at me strangely. She finally told me that I was there on the wrong day!

Great....I know I have something to do....The Hospital!!!! I had to be at the Hospital for 8am to get the second Vaccine A shot! Back in the car and ran to the Hospital. When I got there the courier hadn't brought the vaccine over from the main pharmacy. So I had to wait while they sent for it. I didn't mind since I was lucky that I even remembered what I had to do that morning! lol ...I don't know where my mind is anymore.

Got the shot and off to work I went.

Since all of this has started, Jimmy and I have decided to get our Will taken care...and I wanted a Living Will drawn up. Not that I'll need it....but it just seems to me that I'd feel better if anything went wrong that he'd have my wishes on paper and the legal right to carry those wishes out.

So after work, it was off to the attorney's office.

By the time we hit home I was ready for bed....lol.

Now if I could just remember that the Doctors visit is really on Wednesday morning at 7:30 am! I write everything down....I just forget to read it!

Well it's done. We told the kids and their Father.

I think they took it well.

My youngest is the one I worry about the most. I'm not sure he understands what this is all about. But I know that he knows it's not good.

He fought with his tears and his emotions....I knew he would. He tries so hard to be tough.

I find myself wanting to teach him a lesson that I learned along time ago......

Our Tears don't compromise our strength.

I watched my Daughters face as she found her way through understanding. In her, I can always see the strength of my Grandmother. I find a great deal of comfort in knowing that she inherited that trait.

Now the only thing left to do in making sure that they are ok is to have them tested. I doubt very much they could have it.....I'd just feel better knowing 100% for sure that they don't.

Happy Mothers Day.

My Dragon

I found that Hep C has a nick name.

The Sleeping Dragon.

It's fitting... Strange thing is that I've always loved Dragons.

I guess I never could have imagined that I'd have one of my own.





Sunday is so coming fast. I hate the idea that it'll be Mothers Day when I tell the kids. But I can't put it off any longer. I need to know that they'll be ok and I guess I need them to know why Moms been so weird lately.

I pray for strength....

May 9th - Las Vegas

Wow....Las Vegas has been Beautiful!

We've been all over this City and still we only saw a small portion of it. Went gambling a few times and lost...of course. But boy it was fun!

My husband, who hated the thought of getting on a horse, took me to do what I mostly wanted to do here.....go riding. We went way out into the desert on a dinner ride. My horse was Jules...beautiful horse. He had "Buck". Lol, he wasn't too sure about the name, but Buck turned out to be very nice to him. Only problem though was that the tour guide put my husband at the back of the pack and put me at the front. Sucked. I'm not sure if he just wanted an experienced rider up front or if he wanted a lady to flirt with. Anyway the ride was beautiful and my husband became my hero! (swollen knees and all)

He's making sure that our Summer is fulfilling. I love him so dearly....he gives me strength just by the look in his eyes. He holds me up and I am so much better because of him. I am loved and I know it.....and my heart aches more every day as we come closer to the day that I will be "sick"...

We've been here 5 days and in a few hours it's time to go home. Part of me is ready ......another part wants to just hang here in limbo.

This Saturday we'll take the kids out to my father in laws house. He has a cabin on a small lake with 10 acres of gorgeous woods. He lives there alone since Jimmy's Mom passed away a few years ago of leukemia.

I Wish I could have met her.

My Father-in law has been having some trouble with his back and his foot. He's so stubborn that he'll never just relax and heal, so we're thinking that if we hang out there with him he'll behave for at least the day. Not to mention the kids will have a blast at the lake and in the woods.

Sunday is the day that I dread. The kids and their Father don't know about the Hep C yet. We wanted to get the Geno Type and Viral load back before we sat down to tell them. We thought we'd have some type of good news to tell them. When we got the news of Geno type 1b and the viral load....we decided to hold off until we came back from Vegas.

So Sunday is the day. We've invited my ex-husband to dinner and we'll sit down and break the news.

My ex makes a good ex. He doesn't drive me too nuts and we are all friends. He works hard at trying to be a good Father and while we don't always agree....we usually find our way through raising the kids. So, some Holidays he comes for Dinner. Since this is not a Holiday....he knows that somethings up. I need him to be there for the kids....I need him to see how they react so he'll know how to help them through this.....and i need him to know so that the kids can be tested.

My oldest son, Jonathan the 21 year old, already knows. He seemed to be fine at first....but then when we got the Geno type and viral load back I didn't realize how it would effect him. I really screwed up and told him in the Bar.

Oh, by the way.....we own a Bar. A 2 story Bar with a small restaurant. Kind of ironic since I can't even drink....lol.....it's iced tea for me!

I manage a Texas Holdem' tournament on Wednesday Nights and my son plays. While we were waiting for the players I told Jonathan about the test results and he began to cry. I felt like an insensitive bitch! I just didn't think.....

So, this Sunday, after Dinner.....with Jimmy and Jonathan at my side...I'll find the strength....I'll find the courage.....I'll tell my 2 youngest that I have Hep C.

I hate this.....it's just not fair.

We fly in a couple of hours.....and the wonderful world of Hep C is back rolling around in my mind. I really want to fast forwar through the next 2 years.

This is all a dream......it has to be

Wow....where do I start.
Life is going so fast that I'd really like to find the breaks for a little while.

This June will be our first Wedding Anniversary. Jimmy and I have been together for a little over 2 years. He is my rock and I love him so dearly.

I hate that he has to be faced with all of this. I know that he'd have it no other way....but still.....my heart aches for him.

I've had Fiber-Cystic decease pretty much all of my life. Surgery after surgery, it kept creeping up. So about 3 years ago they decided to give me a Hysterectomy. Doc. told me he left an ovary so I'd be fine. Cured...lol.

This last winter that ovary failed. No big deal, but I'm only 41 and everyone thought it best to put me on hormones for various reasons.

In doing so they sent me for blood work which included checking my liver enzymes which came back very high. It didn't bother me because I knew mine ran kinda high anyway. These however where way out there. So I was sent for Hep testing. Came back Hep C.

Hepatitis C. What the hell is that? Where did it come from?

A couple of weeks later more test results came back. 2 weeks just seem like such a long time to wait.

We hoped for the best.....but the tests came back with Geno Type 1b and a viral load of almost 5 million.

My world just crashed.

For the past almost 2 months now every emotion in the world has passed through me and while I'm learning to cope with it....it churns constantly through my brain. And hardest part is being told that I have only a 30% chance of beating this thing.

I'm going through the Hep A and B vaccines right now. I'm also trying to get my menopause under control. They say that I have to do these things in order to prepair for Chemo.

"Am I really talking about myself....I can't believe all of this"

Part of my preparation seems to be my need to run ahead of the clock. Trying to fill the summer with as much enjoyment and family as possible.

The big statement these days is "let's do it before I get sick".

"Maybe I won't get sick....maybe I can breeze through this...

......I'm scared"

So last weekend Jimmy and I traveled to Boston for his brothers' wedding. This Saturday we fly to Las Vegas. Next Month I'll take the kids to the Jersey Shore. In September we we'll all climb into a raft and go white water rafting in upper N.Y.

That along with the the odds and ends of the regular Summer events should keep my mind busy while I wait this incredibly long wait for treatment to begin. I'll be done with the Hep A and B vaccines by the end of September. Then it's a liver biopsy and Chemo after that.

But for now... I keep telling myself "You Are Strong, you can do this. You will do this and you will not give in to any of it".

Do you know what?

I am strong.

I will beat this.

.......and so the Summer begins.