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.

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.

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.

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....

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.

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!

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!

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.

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.