Tuesday, February 26, 2008

Day 16

I'm so incrediably excited about yesterdays news that it's giving me a new outlook on the side effects that I'm having. It's working....I'm winning. It's worth doing.

I know I have to hold onto my faith that it will continue. I'm not blinded by the first week results. I still know that I have a long way to go and that there is a chance that this little bastard could fight back and mutate, rearing it's ugly little head causing my viral load to soar back up. I also know that there are other dangers that come with taking all of this poison.

But still......My Viral load has dropped down to next to nothing in one week!

I can't wait for the results of my bloodwork from yesterday! It will show the second weeks fight with 3 shots in. I pray that it comes back undected.

This is going to work!

I woke up this morning and my heart continues to beat hard with every movement. But my mind is fully awake and my body may feel weak....but it doesn't hurt.

I had some insomnia last night but it wasn't anything major, I just kept waking up and making myself falling back to sleep.

I have to get myself together for work today. Funny how I have gotten to the point that I must make a plan on how to make it through the work day.

Todays plan -
Take something to munch on throughout the day. (not an easy task as I do not feel like eating right now and I have the pills to take...that thought turns my stomach)
Walk slowly - my heart rate increases with each step and steals my energy.
Drive carefully - I'm not all that worried about driving....but the way I feel is so unpredictable and the past weekend has played a toll on me.

Still, all in all, I am ready for the day!

It will be good! I am winning!!



Rosie, I know it's hard to get started....I know it freaks you out. I also know it's hard to go through. But even with all of the side effects that are hitting me....it's going to be worth it! You may not even have the side effects that I'm having. We are all different..
It's going to be alright.
This Drug is going to work!

My thoughts are with you. Try to just float through the days and Thursday will be here soon. Everything is going to be alright.

Monday, February 25, 2008

WOOOOHOOOO!!!!!

I got my blood test results from last week. This would be the test results after ONE WEEK of tx.

My base line viral count from the screening for starting tx was 4,410,000 IU/ml(Log 10 = 6.6)

Drum Roll Please!!!

After One Week of Tx........377 IU/ml (Log 10 = 2.6) !!!!!!! YEEHAW!!!!!!!!!!!

I am Floored and for once I'm crying good tears! :)

There are a few other changes in my blood work, some of which I don't understand:

Neutrophils, ABS is 1.6 (low) - was 4.17
Monocytes, ABS is .17 (low) - was .34
Ferritin 445 (High) - was 112
AST 23 - was 72
ALT 29 was 90
Cholesterol 202 - was 259
WBC 3.0 - was 6.5

Now I'm not sure what a lot that is yet. But I do know that my AST, ALT and Cholestrol are awesome. The rest I really don't know.

I know that this is only after 1 week and I have a long way to go.....But I am sooo excited about it!!!! I can't wait to see the results of this weeks bloodwork!!

I might be feeling like shit but I'm ringing this little dragons neck!!!!!!!
:)

Day 15

Wow 15 days that's it?

I started pulling out of the funk that I've been in since Friday night. I was so worried on Saturday that I would stay there. I had started trying to figure out how I would be able to function during the upcoming work week feeling so weighed down from these drugs...it worried me.

I thought to myself that I'd just have to walk very slowly as my heart rate would shoot up from just walking across the room.

I also began trying to imagine a place that I could lay down at work for a few minutes if I needed to. I could only think of my car since our new office is under construction and there really isn't much extra room where we are right now.

But hopefully I won't need the plan. Last night I began feeling better. Maybe it was all the stuff that Jimmy went shopping for and I forced down my throat.
This morning waking up isn't all that easy, but I am waking up and my mind is slowly clearing. My body still feels weak, but not to the point that I can't function.

There seems to be a high pitch screach in my ears now since Thursday. It's kind of irritating, but I find that I can ignore it most of the time.

There's also some kind of rash popping up in patches here and there. My elbows have the worst of it. The back of my hands have some of it and there are a couple of spots on the palms of my hands. They itch and sting at the same time. Jimmy said they look like hives. I don't know what they are....

son of a bitchin' dragon and these drugs!!

Going to Hershey today. I should get the results of my first blood work back but I'm not expecting too much as the first results are only from 1 week after my first shot. Not much could have changed in one week. I'm more interested in the results that will come back from this weeks bloodwork.

7am. I guess I better go swallow some pills and get ready for Hershey.

I'm trying very hard to stay in this fight. I wish that the side effects would start taking it easy on me soon. It's only been 15 days on this and there are so many more to go. I'm hoping that I'm just in the adjustment period....learning the in's and out's of how to take care of myself through this. I'm hoping that it was my fault that I became to sick on Friday and Saturday by not eating right and not taking life as easy as I should have. I have to start excepting that I am not healthy and well and that I have got to give into what my body needs and wants. I think I'm just too used to telling it to push through and do as my mind say's. I'm finding that the drugs push harder and will hurt me if I do not listen.

Like I said though, "I'm hoping" that I caused myself to be sick. Because if I didn't and this is just what the drugs do regardless of what I do....really don't know how the hell I'm going to make it through 45 more weeks of this.

One day at a time....I'm looking at today now. Not yesterday and tomorrow.

Only today.

Today I'm not yet myself but my friend ducky is pushing forward out of the dark.

Sunday, February 24, 2008

Day 14 - Shot #3

Yesterday was hard. I didn't feel good at all and the last thing that I wanted to do was take that shot.

I spent most of the day on the couch. It just felt like walking around was difficult. Going from one room to the other made me exausted.

Jimmy went to the GNC store for me and bought a protein mix and probiotic mix. I'm thinkng that it had to have helped. I'm just not eating enough.

I took the shot last night and taking was very hard to do while I already felt sick. But I did. The sides effects last night where not so bad and I think I might have slept through the worst of it.

Woke up this morning feeling achey and washed out...but still I feel somewhat better than yesterday. I hope I continue to gain strength throughout today.

I'll try bombarding my body with as much food, water and mixes as I can stand today. If my blood count is dropping hopefully it'll help.

For now, I am alright and I just feel like shit....thats better than feeling like hell.

Saturday, February 23, 2008

Day 13 - What the hell was that?

I woke up yesterday feeling sooo Good!

Went to work and it just got better. Outside of the muscles pulling in my neck a bit...I almost felt normal all day.

That is until my ride home. Even though I snacked all day just like the day before, my ride home became hell. I walked in the door and headed for the bathroom sick to my stomach. The only thing that was there was water and acid. Not a good combination on the throat.

After that passed I thought I'd be alright. Worried about heartburn from being sick, I decided a bowl of oatmeal sounded good for dinner. (hey if it sounds good I'm going to eat it! lol)

Ate the oatmeal and the hand full of pills. I hoped that whole milk in the oatmeal would be fatty enough for the pills.

After eating I washed a couple of dishes and laid down on the couch for some T.V., but my eye's just wouldn't stay open and I grew tired of sleeping on the couch.

Jimmy was on the computer, so I got up and gave him a smooch goodnight and went into the bathroom to get ready for bed.

That's when it hit. Out of the blue I became so drained that a wave of all out nausea hit me. I became so weak that it made me dizzy and I thought I was going to hit the floor. Looked in the mirror and my face had turned the palest white that I had ever seen so I headed for the bed. I couldn't even yell for Jimmy...I just didn't have the strength.

As I laid on the bed it began to pass and turned into a headache. The nausea passed first and I was thankful I didn't loose that handful of pills.

For the first time I was truly scared. But it passed and I slept the night away.

This morning I feel sort of weak but not bad. I don't know what that was last night but I pray to God it doesn't happen again. If it does, I hope it happens in the same place....close to my bed.

Anyone have any idea what I've just described? I've had fatigue, I know what it feels like...but this was something else. This was an attack that almost put me on the floor and I couldn't even call out for help.

Today is shot day. I know they say take it at night, but after what happened last night I'm afraid to take it when both Jimmy and I will be sleeping. For my own peace of mind I'll take it this afternoon so that I can be aware of what it's doing to my body. I'd rather have the pain and be awake then worry about something happening in my sleep with no way of getting help.

Yes...it freaked me out.

Maybe I'll trust it more by next week when I have the shot planned for Friday Night.

Friday, February 22, 2008

Day 12

I'm waking up feeling Great! Nothing hurts and my mind is nice and clear!

I wish I could stay this way for a little while. Tomorrow is already shot day. I'm trying to keep it in mind that after tomorrows shot, I might get an extra day of feeling good out of my week because I've been taking the shot a day earlier each week in order to get it moved up to Friday nights. If this sticks to a routine (which I praying it will, but I somehow doubt it) I'll have maybe 1 day of feeling halfed assed ok and 2 days of feeling great!

The feel of "great" is a double edged sword the day before a shot. I find myself trying not to think about it and telling myself to just enjoy the day and not waste it thinking about tomorrow.

It's hard to learn how to live one day at a time trying to float through the bad days and enjoy the good.

I'm learning to truly appreciate the good.

I'm excited that Jimmy and I will be going to Las Vegas in about 5 weeks! :) Warm weather, a swimming pool, a spa, 2008 Glass Expo, Rest and Relaxation! I won't even have to leave the resort if I don't feel up to it because everything is right there! I can't wait!
I Love Las Vegas!

I am a little concerned about how I'll be able to take the vials of Interferon onto the plane though. I'm guessing that I'll carry it on in the little cooler that was supplied by Roche.....but what about security? Diabetics must have to transport Insulin, so there must be a way. I know that my friend Terry has flown with it but he was told to just tell them that he has "Dahepsie"...lol. I really don't want to stand in an airport telling those people that I have Hep C. I guess I play it by ear. I only need 1 vial to go with me as we'll only be gone a week.

Anyway, I feel more and more awesome as I'm waking up!!

This is going to be a beautiful day! 5-8 inches of snow and all!

Today I am Just Ducky!

Thursday, February 21, 2008

Day 11 - Effort

By late morning yesterday I started to snap out of the funk. I'm not sure if it was just time to snap out of it or if I was doing something right and my body reacted.
I've never had to work so darn hard to make myself feel ok! But it seems as though everything that has to do with this tx takes effort. It takes effort to put the needle into my body and swallow the pills, takes effort to withstand the sides and then it takes effort to get my body to feel better.

The nausea was much better yesterday. I was able to eat and while I really couldn't eat large amounts before the warning calls came from my stomache came, what I did eat stayed down. I think that nibbling here and there throughout the day yesterday might have helped. I took ritz crackers and sliced cheese with a bannana and pedialyte to work with me. I think it helped because when I came home last night my beautiful Husband had made me a wonderful homemade meatless lasgna and while I couldn't eat a lot of it, it was fantastic and I held it down. :) What a wonderful Man!

Last night the insomnia decided to come calling, but I beat it at it's own game. I had gone to bed at around 9pm, that's a little early for me but I just couldn't keep my eye's open any later. I'm glad that I did because it gave me extra hours. I woke up at 1:30 - went back to bed, woke up every 15-30 minutes after that until 2:30 and didn't fall back to sleep again until around 4. When 6:00 came I felt like I had just fallen asleep. I can't image how I would feel this morning if I hadn't climbed into bed early last night.

Damned alarm clock lives for another day! :)

All in all I think ducky is back!

Tight muscles in my shoulders and neck but no strumming from the my littler drummer boy.
My brain is awake (but of course it was most of the night anyway..lol) and there's no nausea yet this morning.

I think today is going to turn into a good day....I fully intend to make it that way with a whole lot of effort!
8 degrees outside this morning!

Wednesday, February 20, 2008

Day 10

10 days....that's it? Man this has got to smooth out soon!

I do feel better today. The ache in my body is gone and my neck is just very tight but my little friend isn't strumming the cords.

I'm getting very worried about dehydration and loosing weight.

This is only day 10 and my hair has turned to straw and is already starting to break off. I'm starting to itch from the dry skin and once again the feeling of catching a cold is back ever so slightly.

I have pedialyte, Saline nasel spray, Moisturizer, Humidifiers all over the house, Lip balm, Leave in conditioner and I drink water constently. But still I dehydrating. My morning urine has turned more brownish than yellow.

As for the weight, I'm affraid to get on the scale. But I see it in my cloths and my belt has lost a notch. That may not sound like a big deal to most people but I work hard at holding onto weight. I'm 5'7" and I started this treatment weighing 126 pounds. 6 months before I had gotten myself up to 135 pounds. Now......I don't want to know.

Problem is the nausea. For instance, I left work yesterday and on the drive home I began hoping that I wouldn't have to pull over. I thought to myself to breath and let it pass. I got in the door said hello to Jimmy and went for the bathroom.

Half an hour later I tried to eat. Took my pills and layed down. But the nausea turned to heartburn and I ate some rolaids. Layed back down and began praying that I wouldn't loose the pills that I had swallowed at dinner.

I began thinking that maybe dinner wasn't fatty enough for the pills so I got myself up and made pudding with whole milk. But that made the heart burn worst so I ate more rolaids. It was around 9:30 last night before my stomache decided to let up.

I am drinking water constently and I'm trying to eat as often as possible....but I just feel like I'm loosing the battle to stay hydrated and to hold my weight.

I going to take the pedialyte to work and try upping how much of that I'm drinking. I hate the taste of it, but I know it has to help somehow.

Nurse Sandy said that these sides will begin to mellow out as I go, but the fatigue will probably increase. I think that I could deal with the fatigue better than what's going on right now. It's almost as though this tx has looked at me and has said "Lets see what her weakest points are and we'll concentrate on them".

This morning I'm not quite ducky.....but I'm getting there. I am feeling better each day after the shot. If I could just get hydrated and the nausea under control. Sandy said that if it gets too bad she can give me something to help with the nausea...but G.D. it, I just do not want to shove more pills down my throat! I already feel like a walking drug store!

If it comes down to it, and if I can't get a grip on it by next Monday, I guess I'll have no choice in the matter. I can not keep losing weight.

And so this little battle continues........

Tuesday, February 19, 2008

Day 9

It's so strange having your brain waking up just enough to not let you sleep but not enough to function correctly. It's as though it gets stuck in limbo. Hard to explain.

This morning I feel like crap. My body is still slightly achey and the little drummer boy has found his Base Violin on my neck again.

Coffee for the brain....Tylenol for the drummer boy...a slice of toast for the handful of pills and I'll get my shit together to go to work.
Funny this is already becoming a routine.

Yesterday wasn't as bad as the last time. Sandy the research nurse asked how it went and the only way that I could explain it was the first shot was the plague and the second shot is the flu!

She gave me a possitive outlook on it. She told me that it seems to her and to Dr. Jill that the patients with the most side effects are are usually the pateints that respond the best to tx.

Well I'll tell ya, right about now I should be virus free! lol
Jack had a bad day yesterday also. He's a diabetic and when it gets the better of him he tends to hang out on me...it's almost as though he waits for me to make it all better. I know he makes me feel better....

Monday, February 18, 2008

Day - 8

Well shot #2 wasn't as painful. I still had a fever and chills and body aches. But it isn't as extreme as the first time. This time I feel like I have the flu. The first time it just hurt.

On a scale of 1 to 10, Shot #1 was a 10 and shot #2 is a 7-8. I feel like hell but at least I ache and it's not full blown pain.

I woke up this morning and I had to get out of bed because laying there is causing me to be uncomfortable. Whatever I lay on seems to ache more. Now that I'm up my mind is having a hard time coming out of the fog and the little drummer boy is quietly playing his tune. He'll get knocked off his stage just as soon as the Tyllenol kicks in.

I think that all of the stuff that I bought at the drug store yesterday is beginning to help with the sinus problem that I was getting. Thank God because I really do not need anymore problems on top of what these drugs are giving me.

Time to go shove some more of those pills down my throat and we're off to Hershey this morning. The 4 hour ride there and back is going to feel like forever.

How in the hell am I going to be able to do this 45 more times....

Sunday, February 17, 2008

Day 7 - Shot #2 Day

The feeling of catching a cold is still there. But I think it's a little better this morning....or I'm simply feeling better because I'm trying to do something about it.

Went to the store and bought another humidifier and a filter for the old one. I don't think that the heat in the house is helping anything.

I also picked up Aveeno medicated lip balm. Aveeno moisturizer, saline Nasel spray and pedialyte.

I know now that it's not a cold. It would would have graduated to couching and sneezing by now. Everyone has told me that I can't catch a cold or the flu while taking interferon.I guess that makes sense as the interferon is fighting a virus....it must be fighting any virus.

What does worry me though is that I know that if my sinus' are so dried out that they are making me feel like crap, they'll also be more susceptible to bacterial infection.That I know is a danger. Even more so, as I continue to dehydrate and my white blood cells continue to die.

Yesterday was a very special day. My Brother and Sister-in-Law came down from Vermont on their way to Las Vegas. Jimmy's Dad came over with them. Jimmy's Daughter Amanda and his Son Nick along with his Fiance` came over. Crystal and Cory where home also. :) I had a full house!


It was so nice to sit and hang out with everyone. Laughing and carrying on.What a treat! The only one missing was Jonathan :( He's been working in Maryland and didn't make it in on time. He'll be here today though, to hang out with Jimmy and watch the Daytona 500.

Poor Gina had a real cold and brought hospital masks to wear while around me. She was worried that I'd get sick from her. I told her that I just wouldn't hug her and I'd wash my hands more. Man I love her. She's a beautiful woman who's a great reminder to me that even if this tx goes wrong....life goes on and is enjoyable. She just deals with the blows.

I didn't want them to leave when it was time. I didn't want the day to end. I just wanted to hang out in the moment for a while longer.


But time passes and here it is Sunday....shot day.

I hope this one is better than the first.

For now I'm still just Ducky.

Saturday, February 16, 2008

Day 6

OMG I felt soo wonderful yesterday!



Then last night I began feeling like I'm getting a cold. You know that dry sinus feeling that you get in between your nose and your throat just before you get the full blown cold? yep...that's me.



I went to bed last night fully expecting to wake up this morning stuffy and with a sore throat. But instead I woke up the same as when I went to bed. No worse ...no better. That is other than my lips are getting more chapped.



I know...I thought about the dry air heated house. I'm going out for another humidifier. Maybe that will do the trick....we'll see.



On a better note, My brother and sister-in-law are coming in from Vermont! :)

I can't wait! Gina has been through a tx that's something like what I'm in now, except she went through it years ago when it wasn't as advanced and she wound up with the auto immune problem. It'll be nice to sit with her for a while.



Tomorrow is shot #2.....it's on my mind and I'm praying that it will be easier on me than #1 was. There's only one way to find out. Hopefully it's not shot #2 plus a cold.



All in all I may not be feeling "Great!" but I do feel Just Ducky...lol :)

Friday, February 15, 2008

Day 5 - ;-)

I Feel GREAT!!!! :)

No drummer boy....no Base Violin and when I fell a sleep last night I only woke up twice!

There is a slight high pitched ringing in my ears...but other than that I feel absolutley fantastic!!!

I think I started feeling so much better last night. I know I drove my Husband nuts because I just couldn't stop gabbing. lol...I know I do that when I feel good and it's been so many days of feeling like shit....I guess I was just making up for lost time. :)

Then this morning I got up at 6am grabbed a cup of coffee, half a slice of bread with peanut butter and a glass of Whole Milk (shame on my colesterol) and my morning handful of pills. I don't even have nausea yet! :)

Even the sunrise is beautiful this morning!

These are the days that will make this tx deal-able. Funny how I've already begun to appreciate the feeling of "normal".

It Is A Beautiful Day In The Neighborhood! :)

Thursday, February 14, 2008

Day 4 - Somethings wrong with my alarm clock!

Hope this all settles down soon. Somehow I'm willing to bet this tx is something of a camelean. With every 24 hours that go by, things change.

I was exausted last night and fell asleep right away. Half an hour later I was wide awake. Made myself fall back to sleep only to find myself awake again a little while later. All night long my brain woke my tired body up. I'd look at my clock and couldn't believe how long the night was. The time just wouldn't move. I'm so used to falling asleep and waking up to find the time 7 or 8 hours later.

I can imagine how I might need to buy some backup alarm clocks for the next few months as I might just wind up smashing the damn thing! lol

Another thing that changed over the past 24 hours....my little drummer boy has changed instruments. He's now playing the Base Violin and he's using the muscles in my neck for strings that he's tuned way too tight!

Tylenol - yep! we'll see who wins the challenge!

I know I'm starting to dehydrate even though I'm drinking a lot of water. My lips are chapping and feeling puffy. I'm thinking that it could, in part, be leftovers from running the fever on Monday-Tuesday. I hate to use chapstick when I have chapped lips because I Always wind up with a cold sore after using it.

I think I'll swing by the store on the way to work this morning and pick up pedialyte for the dehydration and some ginger candy that Terry suggested for nausea.

Other than that...at least I'm able to wake up. I hate not being able to wake up in the morning to a clear mind. If my mind is clear I can cope with the rest of it.

The lack of sleep worries me a bit about that though....I'll be ok for today but insomnia will eventually start playing a toll. Hopefully I'll be able to sleep better tonight.

So far I'm not as good as yesterday, but I'm a hell of a lot better than Tuesday. Maybe the rest of the day will bring me better news.

For now I'm just Ducky.
:)

Wednesday, February 13, 2008

I survived work!

All and all it was pretty good. I'm lucky enough to be working with my best friend. She makes this do-able.

Tired as hell most of the day and the little drummer boy kept the beat quietly at the base of my skull most of the morning until I took a tylenol to shut his little ass up. Tylenol - the wonder drug.

I feel sooo much better than yesterday!

Now the only thing that I'm wondering about is how the hell am I going to take 5 pills tonight and keep them down. Nausea keeps waving by me. It's from the fatigue just like normal, but now the waves of it are a bit more powerful. From the normal fatigue plus now all of those pills I'm shoving down my throat? (I'd bet that the tylenol on top of it isn't helping my stomach)

Anyway....for as much whinning as I'm doing, lol, I still feel better than yesterday! Thats what counts.

Shot 1 done!


Strange.....stick a needle in your body and it's just not "done" until 2 days later.

Wow...I hope this gets better...I never had the flu like that and I am no whinning baby! That sucked!

Ran a fever but you couldn't tell me that because I was freezing. 3 blankets and a comforter with the heat turned up was the only way that I could be warm. I woke up yesterday morning with a headache and neck ache that stayed with me until the afternoon....then I just wanted to sleep....but couldn't.

This morning I feel pretty good. A litttle like I've been through a marathon..kind of shakey..and a tiny thumping at the base of my skull....but I feel good. Nothing really hurts and I can wake up.

I'm going to move this shot back a day for the next few weeks until it's landing on Friday. The Research nurse wasn't all that thrilled by that, but Jimmy mentioned it again to the Doctor and she said that she checked the protocol and it said that it was ok to move as long as it was a day at a time. Thank God because I want to work so badly....I could not sit at home for 11 months while I do this. Time would go so slowly. I know that work will get hard....but moving the time will be a bonus.

Did I mention that this sucks!

Ok anyway....my beautiful husband is helping to keep my blog up while I'm down by posting comments. I think I'll teach him how to post instead of comment because when I hurt I just can not bring myself to write. Sorry.

Anyway....My liver biopsy came back with mild to moderate damage. My liver is inflamed but not scared. My Alt levels remain high. So killing this virus right now is very important as the damage that is being done will eventually cause scaring. Everything happening to my Liver as of this point is repairable.

Isn't that awesome news!!

Translated....lol....6 months after this is done I'm gonna get plastered on a big ole bottle of Mezcal! :)

Got to go get ready to take the hand full of pills and go to work.

77 pills a week! And then that G.D. shot! Not to mention the Propananol that I take once a day and the Tylenol that will go with the shot! (Thanks Iris, I didn't think about lower mg. Tylenol. It's make a lot more sense...Looking at only being able to take Tylenol 2 times a day just will Not cut it! The pain lasts well over 10 hours. I'm switching to Reg. strength and stretching them out as far as I can. Staying under 2000 mg's will be easier)

What will be left of my blood in a few months will be a sewage.

On this side of the first shot I am good.....as Terry say's "I'm groovy".

((Hugs)) to eveyone of you ....

Tuesday, February 12, 2008

Hey everyone...Thank you.

Got home last night and the timing was perfect because that's right about the time that I started feeling bad. I'm not sure what it is that did it, the shot or the hand full of pills. I'm hoping that it's the shot because the hand full of pills I'll be taking everyday in the morning and then again at night. 3 of the study drug + 3 riba's in the a.m. and then 3 study drug and 2 riba's in the p.m.. And then of course the inerferon shot once a week.

I'm pulling out of the fever and the body pain now, but the headache and neck ache wants to hold on. Tylenol helps, but not being able to take more than 2000 mg in 24 hours is going to be a task. (I may just cheat at that one on shot days)

They said at Hershey that the 1st shot is the worst. I'm sure they're right.

Sorry it took a while to get a post up...sorry it's short, but I'll post more later when this G.D. headache is gone. Thanks again for all of your thoughts.

Saturday, February 9, 2008

Whats with my brain!!!

Did I say March 11th? Yes I did write that. I don't even know what month I'm in lol.

First shot = This Monday February 11th.

2 days from today.....yeehaw

Wednesday, February 6, 2008

I called Sandy's number yesterday at around noon...she wasn't there and I left a message for her to call me back.

Finally last night she called.

February 11th at 11am I go to Hershey to start.

I asked about my biopsy but she said that she didn't have the report in her file. Doctor will have to fill me in on it when I go on Monday.

Not that it really matters, but she did have my viral count. It's pretty much the same as it was before.

So thats it...I have my start date.

Mondays....I don't exactly like the idea of having to take the shots on Mondays, but I don't have a choice.

My beautiful Husband came home from Denver in the wee hours of the morning. Even though I couldn't seem to get myself woken up enough to have a real conversation with him, just seeing him home made me feel so much better.

Sunday, February 3, 2008

Searching for answers


My roller coaster ride has put my brain into another search for more answers. Sometimes I wonder if I should search. Sometimes the searching leads to more questions. Sometimes the answers that I find are wrong and sometimes their right and I really don't know what to make of them.

For instance, is RO4588161 the same drug as R1626? I didn't think that it was, but then up pops someone who gave me this link:
http://www.maxygen.com/pdf/EASL_Roche_2006.pdf

"R1626/RO4588161".

So is RO4588161 the prodrug of R1626? I suppose it is.

So then the search went to figuring out what a "prodrug" actually is.

"A prodrug is a pharmacological substance (drug) which is administered in an inactive (or significantly less active) form. Once administered, the prodrug is metabolised in vivo into an active metabolite."

Translated to me means: It's a drug that changes into R1626 once inside the body.

There seems to be many reasons for making "prodrugs". Better obsorption in the body, less sides or less intensive sides to name just a couple. Sometimes a drug is just too much of a whamy to take all at once, so they slow down the intake by making the drug one thing and having it slowly turn into something else once inside the body. It seems that if a drug like R1626 is not excepted in the body they had to find a way for it to be excepted. So they kind of "trick" the body like you would trying to get a child to take medicine by saying "no no honey it's not nasty tasting....it tastes good" or the way you'd get your pet to take a pill "Here ya go Fido, a nice piece of hamburger! You'll never know that the pill is wrapped up inside"

Your body excepts the Prodrug and once inside, it converts or changes into the regular drug (R1626?).

Ok, so why is this a Phase 2 drug and not at the same phase as R1626? Why do my consent forms say only 130 people have taken it?

My thought is that there's been change in the Prodrug part of it. It still becomes R1626 but how its delivered must have changed. (Holding the kids nose to pour the spoon full down didn't work so well, so how about we try putting it into a piece of candy?)

Oh who knows....not me. Most of this is just my guess or my compiling all the info from different corners of the world.

One concern, which in reality is something of a concern for even Standard Care treatment, is viral mutation or viral breakthrough. I didn't really understand what that was until I came across this article - http://www.medicinenet.com/hepatitis_c/page2.htm
"In addition, within a single host, there are minor genetic differences in the hepatitis C virus. These minor differences give rise to what are called quasispecies (quasi means resembling each other). Where do the quasispecies come from? Well, one of the non-structural hepatitis C virus proteins mentioned above is the enzyme polymerase. This enzyme is the machine that allows the virus to reproduce its genetic material (RNA) in order to multiply. Now, this RNA polymerase is very prone to making mistakes, resulting in changes (mutations) in the genetic material. The majority of these mutations result in a non-viable (not living) new quasispecies of hepatitis C virus, but sometimes the mutation results in viable quasispecies. With time, the accumulation of these viable mutations results in multiple quasispecies of the virus within the same host.
Why are there so many different varieties of hepatitis C virus anyway? Perhaps the different varieties confer an advantage to the survival of this virus over the years. For example, some of the new species may become more efficient in reproducing themselves (replication). By the same token, however, the genetic variability of hepatitis C virus has made the development of a protective vaccine against all of these genotypes and quasispecies a near impossible task with our present technology. Moreover, this variability probably also explains how this virus results in such a high rate of chronic infection. Thus, the genetic variability may enable the hepatitis C virus to avoid destruction by the host's cellular immune cells or antibodies, and so maintain (perpetuate) the chronic infection"

It seems that there are a number of factors that can cause this virus to mutate into a different genetic makeup. A fear with Polymerase Inhibitors (which RO4588161 is) is that the drug itself can irritate this Enzyme into producing a genetically changed "Super" Hep C cell that can avoid treatment and that will replicate itself throughout the body.

Smart little son of a bitch isn't it?

So far R1626 doesn't seem to have increased that risk yet. As far as I can see anyway. The risk is there....but weighing the risk against the gain? I'm not convinced to pull out of the trial.

Another risk that I have personally witnessed and I can't find much on is the idea that treatment could cause a type of immune system confussion. I traveled to Vermont to spend some time with my Sister-in-Law who underwent tx for Hep B years ago. (and by saying "years ago" I am praying that the medical advancement has progressed greatly since her treatment) While on treatment her immune system became confused as to what cells it should and should not be fighting. It turned against all cells with no descrimination, attacking her good cells right along with her Hep cells.

While she lives her life taking medication to control her immune system...her life is forever changed and painful at times.

Do I worry about this? Well in the back of my mind I do....but as I said, I'm counting on the statement of "years ago".

Look, no matter how we view any of this....I have Hep C and I want it gone. There is a certain and definate danger of living with it. I almost shit when my GI said "Your liver is doing good so far....you might have another 10 years before you're in real trouble." 10 years! I'm 42 f 'n years old! He was trying to make it into a possitive....sometimes I wish people would just shut the hell up.

No matter how you view this, standard tx also has it's dangers. A trial drug always has it's unknown dangers added to that list, I know, but since I'm here and theres a chance that this trial drug could increase my chance of clearing the virus...I'll step into the chance....risks and all.

Now if Sandy would just call.....lol.

Mentally I'm still in line. Anger, frustration and fear take more of my emotions than I'd like them too, but strength holds them back.

I have friends who have or are going through treatment and the path that they have paved gives me incouragement to hold onto my strength.

The love of my Husband forges me forward.

In my search to provide me with the knowledge that I feel I need to make a life altering decision like 48 weeks of chemo, to trial or not to trial, ect., I've come to learn 2 major realities of pre-tx and tx itself.
1. Hep C is a sneaky diabolical little bastard of a dragon that is Not very well understood by the general Medical field. Even "specialist's" have yet to fully understand it. Society is completely ignorant to it and education about it is non-existant in my area. It's a demon hiding in the shadows and the tales that are told about it in my community seem more like folklore than educated statements. (Can I get Hep C by drinking out of someones glass or sitting on the toilet?)

damn it!

2. Everything that I read may or may not pertain to my outcome.
One friend has side effects so hard that getting out of bed in the morning is a chore in itself. Yet another friend only has a rash and loss of hair volume. My sister-in-law has an auto-immune desease. But yet another friend has undergone 72 weeks of the "poison" called tx and she's not only virus free and beginning to find her life again...she's healthy. Still another friend has some bad days and some"groovy" days. One more friend has gone through tx 3 times....and failed all 3.
If you're searching the net looking for what you are faced with by going into tx, you will not find your answer. It truly does depend on you and how your body reacts to it. You won't find your answers here, because here is not where those answers lay.
That knowledge has turned into my frustration, anger and the feeling of being lost while sitting in this limbo waiting for the phone call.

The call will come soon. Or I will call.

The first shot, first pill will come soon enough....all of this will become only a memory in my past.

For right now I continue to wait...
Oh and by the way - GO N.E.!!!!!!!!!

Friday, February 1, 2008

Ever get to the point that you just don't want to talk about it? I mean whats the point.

I was feeling good for a bunch of days there, but lo and behold I feel like shit again.

Right about now I want to hit the wall.....or sit on the floor and cry....but it will do me no good. I won't feel any better and the nurse won't call with a start date. And by the way if she does call....it probably isn't going to be the date that I had hoped for. Calling her? Well there's a scary thought isn't it? Yeah I'd call her but Jimmy will be away from Sat. through Tuesday night and I do not want her to say come in on Monday or Tuesday. I don't want to go it alone. (my fault...sending him to Denver is my valentine present to him and he very much needs a break away from reality (Bar stress and me stress). Tickets are bought and where bought when we thought I'd be starting later or much earlier than the 4th and 5th)

Note to anyone looking at starting treatment: Don't make plans! Don't think and don't expect anything to happen when you think it will....You Will Be Disapointed!

No I'm not sitting here crying in my beer....lol....I can't have a beer.

And no I don't need a slap in the face to snap me out of it....right about now I'd probably slap back.

What I need is to get this F'n thing over with!

Saturday, January 26, 2008

I Feel good! nana nana nana na

Well now, it's Saturday and the week is over.


For the past few day's I feel really good! My little dragon has been giving me a break now for almost a full week! (knock on wood) Instead of fatigue I've found the normal tiredness at the end of the day....I've actually been able to eat half assed.

Last night Jimmy and I went to dinner at a local fine cuisine restaurant up the street from us called Martins. Awesome food! I had lightly smoked fish layered with bacon and sliced apple and a sauce that is out of this world! I wasn't sure I would like it. It sounded somewhat strange due to the apples....but it was scrumptious! I couldn't help but to eat it all. lol, that's a big deal for me!

I want these good days to last. I'm hoping that they do so that Jimmy and I can enjoy some "good" time together before tx begins. Even if tx is nice to me....I still want us to know "normal" before tx starts.

Who knows, maybe it's my will to have those good days that's battling the dragon into submission. That would be a nice thought if it where possible.

My Mother and I have a date every Thursday night now to go online and talk through Yahoo IM's. It's a nice way to stay in touch in between phone calls. We've kept our date for 2 weeks now and our IM's have added some peace to my mind. Her support is something that no one else in this world could give to me. It's nice to be a daughter again.

Debbie's getting Married in the beginning of February. Still I haven't heard from her. I'm thinking I won't and with everything that's going on I'm thankful for that. I just don't have it in me to give even a little bit. And to be honest I don't want to.

Her marriage reminds of another reason for why I feel that way. See, she was one of my bridesmaids when Jimmy and I got married. My Maid-of-Honor was my best friend. It wasn't too long ago, that my best friend told me why Debbie is not one of her favorite people. It seems that when Debbie traveled up for my wedding she told my Maid-of-Honor that she didn't come all the way up here for my wedding "Hell it's not like Laurie hasn't been married before" she said that she came up here to meet JJ (a friend of Jimmy's and mine who had been chatting with her online for a long time). I know it's true. I had ignored her downing most of a bottle of Jim Beam before walking with me down the Isle and then her acting like an ass throughout the wedding night because I just thought that she was blowing off steam at the time due to her every day life stress. But looking back....and hearing the stories about her from friends...it all adds up. It was my wedding and nothing or no one could touch the happiness that I was in. So I ignored her craziness. But looking back ...it all comes together into a full picture and I suppose I feel a little like a fool for believing that after all of these years my sister and I would have a "real" sister relationship.

But enough with that rambling....lol. Life goes on and right now the going is good.

I'm hoping that Sandy, the research nurse, will call early in the week next week with my start date. I want to know what my liver biopsy showed and I'm very interested in knowing what my viral load is now (from the blood work a couple of weeks ago).

Seems like everybody has a different opinion on viral counts. Some say that it could go up and down without treatment....some say it only either stays the same or goes up without treatment. They also say it doesn't matter what the count is before treatment, it only matters that tx makes it drop.

Something about it makes me think that it should matter. If it dropped without treatment, in my mind I think that tx should send it spiralling down. On the other hand, if it's higher now, doesn't it mean that I now have more of it to kill? And, if it's the same as 11 months ago, isn't it just holding steady? Viral loads must mean something more than being a measurement for how tx is progressing.

So many questions....and so many different answers from so many different corners of the world. I start to get the idea that really no one knows for sure what the answers are.

Anyway, these are the thoughts and ramblings of a woman tortured by waiting...lol...what do ya expect! :)

Goto go get ready to open the bar.

Tune in next time for the ramblings of Laurie...lol ;)

Life is good.




Jimmy and our San Diego sunset a year ago. We ran up and down that beach collecting sand dollars and exploring the wildlife caught in the pools of the rock (boulder) ledges. We spent hours playing and adventuring on this beach. I'd love to go back one day.

Wednesday, January 23, 2008

Biopsy - done

The liver Biopsy is done.

We got back kind of late last night and they put me to sleep with Demerol and something else that knocked me on my ass so by the time that we got home, typing was not on my list of things to do. lol....sleep was.

I feel groggy waking up this morning and other than a sore spot on my side it was no problem.

I'm not a big baby when it comes to pain...all 3 kids where born naturally and I've had a needle biopsy on an ovary (no meds...hurt like hell) and 2 on my breast and I've gone through heart surgery that they had to keep me painfully awake for. But I do have to tell you that if given the choice...I'd choose "knock me out" any time. She didn't give me a choice....She knocked me out.

The blood work shows everything's ok, accept my Alt levels are still high and now my protein levels are low. We're guessing that my protein levels are low because of the nausea that I get from the fatigue. I guess I'll have to try to find food that is higher in protein other than chicken and salads. I did try to eat a hamburger on the way back home last night...stupid big mistake...hamburgers are out.

As for the Alt levels...well we'll be dealing with that soon enough.

I know they did another viral count but it wasn't in my file last night. I'll have to get that report from the research nurse. I don't expect the count to be any lower then when they tested it the last time and I don't think Dr. Smith thinks it will be either.

As for the biopsy, Dr. Smith said that the sample looked like "a little inch worm" and it held together well. She said that when there is cirrhosis the sample usually breaks or falls apart easily. Mine didn't so that's a good sign.

We won't know anything more for 7 to 10 days. And then that's it....I start treatment.

I'm just around the corner from the start line.

She asked me yesterday if I was excited to get started. I told her "more like anxious" but I can imagine that she's excited. Waiting to start a new research must be a real highlight for her and her staff.

Oh and by the way, It's Tylenol for me and not Ibuprofen. Good job everybody!

As for AD's, she thinks I should wait until I need them. I kind of think that too.

I have to keep in mind that this is a study drug and that one of the biggest parts of this study is to evaluate the side effects. She didn't tell me that, but my own common sense does. I was on AD's only once in my life (not counting the Xanax that I have to take everyonce in a blue moon for stress). It was something like Lipator (sp?) and it didn't do anything except give me strange dreams.

I know I'll probably change my mind later down the road, but for now I just feel more comfortable with not taking anything more than I have to. I just really hate taking drugs.

So...for now all is well.

Sunday, January 20, 2008

Ok, so I pretend not to think about it but I am. Stay's in the back of mind all of the time. How could it not?

This stupid little dragon.

Recently, questions have been popping up in my head more often.

For instance, Anti Depressents...if started before hand what could they really do? I'm not depressed....sure I have anxiety, hell who wouldn't at this point. That just wouldn't be human. But If I am anxious won't A.D.'s cause more? It's on my list to ask the Doc.

And there's the question of the Liver Biopsy seeming to be not so high on the priority list for tx. It's important, I understand that, but I get the impression that people elsewhere determine to treat or not to treat depending on it's outcome and how much damage has been done to the liver.

It seems to me that the biopsy is being used only to rule out tx. If my liver damage is too great then they may pull tx off of the table. This train of thought hasn't come from the study.....it's come way before I knew about the study....even before going to Hershey. So why does it seem as though to treat of not to treat is based on the Biopsy everywhere else but in my area.

Then there's Ibuprofen versa Tylenol....I could go back and forth with that one all day long! Everyone seems to have a different opinion on it.

Since I told my Doc that I take Ibuprofen for pain and she did not object....I guess I'll go with that until she changes it. I have to rely on her opinion simply because she is a Hep C specialist.

Oh there are loads of questions rolling around in this little brain of mine. I go to Hershey in 2 days (yes U.C. I'm still counting...somehow it makes me feel better), I'll ask some of my questions then....some questions can't be answered.

I still haven't found a name local brand for Guarana yet, so if anybody knows of one that I can find locally or in the U.S. online (U.S. online because my credit card has already been stolen twice and I would like to lesson the likelyhood), please drop me the name.....there are days that I could really use it.

So that's about it...I'm doing good, I'm a little nervious about the biopsy itself but I'm taking it in stride. I'm pretty nervious about tx but who wouldn't be...it's just too much of the unknown. It'll come soon enough and the unknown part will finally be over with. I deal with it.

Got to go make Jimmy Grits! lol He fell in love with them when we went to Florida! Go figure - a Northener who loves grits!

Enjoy the day.

Thursday, January 17, 2008

It's days like this that I want to stay in bed!

Maybe Teah and Magda are right....maybe I'll feel better on treatment because this morning it just couldn't be any worse. or could I....wouldn't that stink?

It's weird how this works, I feel half assed ok for days on end then bang it jumps up and makes me feel so horrible.

I woke up but I don't feel like I slept. Hell I don't even feel like I'm waking up all the way and I've been up for an hour. My upper back is killing me and I'm going to take Ibprofen even though they say to stay away from it.

I'll down a cup of coffee with the Ibprofen and I know it will make me nauseaus. So then I'll wake up and my back will let up a little, but I trade it for nausea... go figure.

Anyone know where I can buy Guarana? Will that make me nauseaus? I'd like to try it anyway. I can't seem to find it locally. Maybe there's a name brand that I could look for?

Yep.....whaaaaa.....

Time to find the "stupid" smile, brush my hair, stop my whining and go to work. I'll fight through the day to find the reward of coming home and going to bed.

Hi Ho , Hi Ho....

Monday, January 14, 2008

Biopsy = Jan 22nd

I talked to Sandy today. She scheduled my Liver Biopsy for Jan.22nd.

She also said that she's figuring I'll be starting treatment sometime around February 4th.

That would make me done right around New Years next year.

It's what I've been waiting for. It's a strange feeling to be waiting for something that is going to both help you and make you sick all at the same time. It's almost as though the anticipation has a split personality. On one side is strength standing up and saying "I'm ready, let's get down to it". On the other side is fear shying away from the thought of that first shot.

All and all, I am ok.

Sunday, January 13, 2008

30 days to go....

It's kind of strange the way this whole story plays out into a counting game. 30 days to go before the time clock runs out on my screened period. They have to have me started on treatment within the 35 day time period and there are 30 days left.

While I've been sitting here waiting for an agonizingly long time, I seemed to have lost the concept of 30 days.

Let's see....30 days...it's a month...4 weeks.

4 weeks!....lol...that feels better and scarier all at the same time! So we'll just stick with 30 days for now. :-)

While I had decided earlier on not to tell my Mother about this little dragon, my dear sweet husband found a way around my wishes and did what he felt was right....he included my Mother in on a Christmas News Letter that he writes every year for family near and far. In the news letter he wrote about this little journey we're on. I have to admit that I knew he put it in the Christmas card, I guess I wanted her to know....I just couldn't stand the thought of the same thing happening with her that happened with Debbie. I have nothing more left, mentally, to afford loosing.

After an angry letter from her, due to the way she found out, I emailed her my honest explanation and my love. Yesterday we spoke on the phone for a very long time and I found my Mom again.

No matter how old we get....no matter what happens in our lives or how far apart we get, the love that I have for my Mom is always un-dieing.

Jimmy did the right thing....I need my Mother and all of her support. The little girl in me would not be able to make it through all of this without her. The woman would always survive ....but in doing so I would have forever made myself an orphan.

I do have one lesson in all of this to learn, I have to learn how to be Daughter.

That must sound strange but for more than two-thirds of my life I have not had the privilege of being a daughter. So many people take that for granted. Bad day at work "I'm going to call my Mom".....Daughter turns 18 or is graduating "I gotta call Mom"....Problems at home or with kids "I'm going to call Mom".

Or how about you just simply need to hear that voice....her voice....and she needs to hear yours.

Way back in the back of my mind, through all of cob webs....hiding in the shadows is the little girl that I once was.

When I hear my Mom's voice...that little girl is not alone anymore.

I don't know....maybe it's hard to understand....

The weekend has been nice. Yesterday went back and forth with being tired but not fatigued. I'm working on putting back some of the 9 pounds that I lost by eating whatever I can stick in mouth that won't make me nauseous or more tired.

Lately I found Oreo cookies....lol. Hey if they don't make me sick right now I'll eat them by the hand fulls!

Jimmy and I got the Christmas tree and decorations put away. And my plotter is set back up but not reinstalled yet. (one thing at a time)

The house is a mess....but hey it'll survive. Between the both of us, we'll do a little here and there as we go. It always works out in the end.

Back to waiting for Hershey's call.

Enjoy the day!

Tuesday, January 8, 2008

Lucy I'm Home!

It was a beautiful day for a ride.

All and all it was a pretty good day. Lots of info. Consent forms to sign. Lots of checking this and that and LOTS of blood drawn.

I'm kind of glad that they weighed me before they took my blood because by the time that they filled all of those vials I think I had to weigh about 2 lbs. lighter :-) As it is I lost 9 lbs. in the past month. Keeping my weight is a challenge that I'm going to have to work harder on.

I do have a better grasp on the treatment time line and a better understanding of what is to come.

Today was a day of screening. In about 2 weeks, as soon as my blood work comes back, I go for the Liver biopsy. After about another week I go back to start treatment.


That is if, of course, the blood work and liver biopsy come back as planned and I am put into this study.(which I would say at this point my chances are very good.)

The trial drug is RO4588161. It's describe like this:

"HCV polymerase is an enzyme necessary for the hepatitus C virus to make copies of itself. There are currently no approved HCV polymerase inhibitors but there are simular types of drugs used in treating Hepatitus B virus and HIV. RO1048297 is a strong inhibitor of the polymerase enzyme. The study drug RO4588161(which I'll be taking) is the prodrug of RO1048297 which means, RO4588161 rapidly converts to RO1048297 inside the body." say's the paper that I have in my hand right now from my Doctors visit.

If you're anything like me, you'd convert all of that to say "Bla Bla Bla Bla". Because thats the way it sounded in my head. Except for the "Oh...Ok...I can follow that! I don't know what the hell it means.....but alrighty then". lol

Sandy, who is a pretty cool nurse and who I enjoyed having as a teacher today, put it like this: There are pretty much 2 kinds of drugs being worked on right now through research. One is a drug that will go into the viral cell and try to attack it from within. The second is a drug that attaches itself to the outer shell of the viral cell. It then tries to attack the shell to expose the cell, causing the cell to die.

This Prodrug is the later of the 2.

Now this I understand without the bla bla bla -

We're going to try to skin the dragon. :~}

This is a Phase II trial that will include approximately 490 people internationally with Geno type 1.

There have been about 130 people given this drug in a previous research study(s). (Which, by the way, sort of surpised the hell out of me. LOL....I don't really know why it surprised me, but it did.).....Anyway, this is the 6th clinical study with this drug. I assume that with only 130 before me and it being called a phaes II drug, that only 1 study was administered to Humans.

The most commonly seen side effects where:

*Flu-like symptoms such as fever, chills, muscle aches, body weakness, joint pain and headaches

*Upset stomache (nausea, diarrhea and vomiting)

*Decrease in white blood cells, red blood cells and platelets

*Insomnia

*irritability (oh boy!!)

*infections

*rash

Now lets combine that with the side effects of the Pegasys and Copegus side effects:

*Flu like symptoms (same as above)

*Extreme Fatigue (got that....gonna get worse..ok.)

*Upset stomach (same as above)

*Blood sugar problems

*Skin reactions such as rash, dry skin or itchy skin, redness and swelling at the sight of injection.

*Hair loss (I just really hope I don't loos my eyebrows....It freaks me out the way people look without eye brows!lol)

*Decreased appetite, weight loss (Oh Boy Here We Go! That Sucks!)

*Coughing (I should really think about stopping smoking.....naw, not right now. I have one nerve left and my quiting smoking right now would be a health risk to the general public)

*Dizziness

*Trouble sleeping

*Pain, Back pain

*Laryngitis, sore throat (Jimmy would love this side effect as long as it comes at the same time as the irratibility!)

*Increased Liver Function

*Loss of concentration, confusion. (Brain fog right?)

Possible serious side effects:

*Mental Health problems including irritability, depression, anxiety, aggressive behaviour, suicidal behaviour and homicidal thoughts. (Oh boy! Look out old ladies driving slow in the passing lane!)

*Blood problems - drop in cell counts (same as above)

* Infections

*Lung problems - pneumonia

*Eye problems-Blurred or loss of vision

*Autoimmune problems (Oh boy! Now I'm gonna have car trouble?!......lol...no I know what that means!)

*Macular degeneration (Optic nerve stuff right?)

* Development of an unusual rash - Stevens-Johnson syndrome (huh?lol.. I got a flash of myself covered in diaper rash ointment.)

The majority of this list of symptoms are contected to the standard treatment and not the study drug. The sypmtoms for the study drug are actually only the first 7 symptoms listed. (see I think that's what bothered me about the 130 people before me....they just don't know what all of the side effects are yet) What the hell....I might as well go for the gusto!

There are 7 arms of the study. It's a double blinded study with 6 groups recieving various dosages of the study drug along with various dosages of Pegasys and Copegus. 1 group will recieve a placebo with Pegasys and Copegus.

6 of the groups (5 recieving the study drug and the 1 group recieving the placebo) will ungo 24 weeks of the drug, pegasys and Copegus and then Pegasys and Copegus alone for an additional 24 weeks. 48 weeks total treatment.

In the 7th group they'll recieve the drug, Pegasys and Copegus but those who have no virus by week 4 and continue to have no virus until week 22 will stop all medication at week 24.

After the first 12 weeks anyone in any treatment group that is less effective compared to the standard of care arm will be offered re-treatment with a full 48-week course of treatment with the currently approved standard of care therapy in a seperate protocol. (I take this as if you fail to clear it and you were not on the full dosages of Pegasys and Copegus you'll be retreated with the full course. But what I don't yet understand, and I will ask is - If it's a double blinded study how does the research team know that you where given a less than standard treatment?)

So....here's the plan man. :-)

My blood work will come back within the next 2 weeks. If that went well I'll be scheduled for my biopsy right away. After the biopsy, assuming that that goes well also(no cancer or other problem causing liver damage), I'll be scheduled to have a visit with Sandy who will teach me how to inject myself and how to take the drugs.

And a new path in this little lourney of mine will begin.

Oh, and from today's date they have 35 days to get that first injection into me. The study Protocal says that after the 35 days they would have to start all over again with blood work, EKG, etc. They don,t want to do that.

After I start, I go for blood work once a week for the first four weeks. Then I go once on the 6th and the 8th week. Then the 12th, 18th, 22nd and 24th week. After that I guess we see what happens.

Oh yeah....if I'm in the unlucky part of the 7th group who did not clear the virus by the 4th through the 22nd week, I'll be on the study drug with pegasys and Copegus for week 25 through 48.

So thats it I think.

I've searched the net but I can't really find anything on it. If anyone finds anything please let me know.

All in all I think I'm ok. A little scared and concerned maybe. I'm trying to keep it all in perspective. Trying to constantly remind myself that just because they list side effects, it doesn't mean I'll have all of them....maybe I'll just have a few easy ones....maybe I'll have none. (boy I pray)

Sort of excited too...just to get this over with and get back to "normal" life again. I know what I have to do, so I pretty much want to get started doing it.

To end this post on the lighter side...A life insurance salesman stopped by tonight to present life insurance quotes for us. Believe it or not my premium was way cheaper than Jimmy's! He's healthy as hell and I didn't hide anything from the insurance salesman. PLUS I smoke! Go figure.

lol....it's good to be 8 years younger!

Sunday, January 6, 2008


Well who would have thought she'd call on a Saturday? Not me!....but she did!

Tuesday at 10:30 am the ball starts rolling. I go to Hershey to sign the consent forms for the study drug, I get blood work done, a physical and an EKG. I assume they'll set up the liver biopsy then.

After having every color of the rainbow of feelings with waiting I finally have an appointment and a little bit of fear is sitting in the pit of my stomach.

But that's ok...I moving forward.

I had something happen to me in public yesterday that made me panic and really freaked me out. Although I think I hid it well, I cut myself in a room full of people who know that I carry this little dragon with me. Even though I know that they can not just get it just because I bleed....I also know that the lack of education here would cause them to stampede.

Funny thing is, that's exactly what I wanted to do, run away from it. (or at least the situation) Blood has never scared me before....especially not mine. But standing there in front of room full of people who know what I have and looking at a little cut on my finger bleeding like a stuck pig, I got to tell you, I can't explain what it felt like.

Treatment....Is it time? Is it necessary? Will it be worth it? Hell yes.

I am ready.

Saturday, January 5, 2008

Yep, you guessed it.....I'm still waiting.

I'm finally over the flu and my regular fatigue has been nice to me for the week. Hit me hard all day Wednesday and made me crash by the time I got home from work. Aside from the need to lay down early each night....this has been a very good week.

The spidy web thingy's (spider nevi) are getting darker and 2 more showed up....nothing like looking in the mirror each morning and finding a reminder that you have Hep C and there's not a damn thing that you can do about it. I guess it's time for me to start wearing more make up. Anyone know a good brand of foundation?

I've carried my phone everywhere waiting for the call, but it didn't come. I shoved the thought of it into the back of my mind saying "Oh just don't think about it"......yeah right, like that really works.

I'll give it through Monday and if I hear nothing I'll call the research nurse again on Tuesday or maybe Wednesday if I can hold out that long.

Worst part about waiting so long is that I'm loosing patience and it's transferring into my every day life. The little things are really ticking me off and I have to keep reminding myself to not react. I truly believe that the only thing that is stopping me from being a total bitch is the fact that I love the people who are around me and I can not hurt them by unloading all of whats bottled up inside my head onto them.

My "Stupid Smile" is getting very worn out now a days, but I still find a way to paste it on.

God help the stranger who pisses me off.