My Dragon - Laurie's Hep C Story

Forgive me

2009-10-31T08:02:00.003-05:00

I haven't been to my blog for months....and I've been reminded by a friend that I never came back here to post how my treatment turned out.

First of all my appologies.

I am cleared of the virus!! WooHoo!! I did make it. So many of us didn't.....

The road back to recovery from tx was slow going. My Thyroid has been the hardest hit but just like my trial doctor said, it's slowly coming back around. After tx my thyroid went Hyper and then about 2 months later it went Hypo. I began taking thyroid replacement and around 3 months later my thyroid went hyper again. I stopped the replacement drug and now I think it might be ok.....I just had bloodwork on thursday and I haven't heard back yet...but I feel good so I'm thinking it'll be good.

It's a funny thing about recovery....once tx stopped I just wanted to get away from it. It consumed so much of my life for a year and a half, I just needed my life back. Selfish...I know...but we all have just one life to live and when you have an experience like this you start to realize just how much each day really means to you and you begin to focus on the day you have and try to forget about those that you lost.

It may not make sense...I know....

Life today is beautiful. Hard work is now something I enjoy. My play time is taken up by hot glass and lampwork glass. (check out JimChristmanArtGlass.com)

And I feel damn good. Even my hair has grown back in every place that it counts. lol it's funny but kinda nice....my hair has yet to return to my underarms! I haven't shaved there for over a year.

Ok...so here's the end of my blog.......

If you come here looking for answers....I don't really have any. I have written in this blog my experiences. But what I went through may not be the same for you.

We are all different.

I began this little journey scared, confused and even though I had the love and support of an incrediable Husband, family and friends.....I still felt all alone and the drugs played with that right up until I kissed them goodbye.

I came here online searching for answers and an education. What I found where friends. Beautiful wonderful friends who taught me and showed me the way to survive this tx.

If you come here looking for an education, what you will find are my experiences. But one more thing that you'll find is a piece of my heart and a year and a half of my life. I write it, in part for my own sanity....and I write it in part for you.

You will learn that you are stronger than you ever thought you could be.....

You will find that you have people who love you and will support you in ways you never thought they could.

You will find new friends through this who will change your life forever and you will remember them forever.....

Thank you my friends. Your love carried me though the dark tunnel and I made it into the sunshine.

God Bless you and Keep you.

All My Love
Laurie

With Love

2009-04-24T10:00:00.000-05:00

Wow! I can't believe it's been this long since I've been to my blog!! I am sorry everyone. I guess I just went through a "I really need to have time away from being sick for a while." phase. I certainly did not intend to just drop this blog like it seems that I've done. I deeply apologize.

Since my last post my Thyroid has gone from Hyper-Thyroid ism to Hypo-Thyroid ism....Just like my Doctor at Hershey said it would. Now I take Thyroid hormones until my Thyroid levels off. Which I'm sure it will. They tell me that it may take up to 9 months or so for that to happen.

Outside of that I feel wonderful. The sad part of that is that I have the unending urge to barrel through life enjoying every moment of feeling good that I can. It's funny though....it's been a year and a half since my body has been really "worked" and I find myself, more times than not, with sore muscles. Ooooh but do they hurt sooo good! lol

I suppose this is my good-bye post. Other than a PCR test in June, I have completed tx. Jimmy and I went to Hershey a week ago and last week the call came to tell us that my viral load had come back Negative! So far I've cleared the virus!

The last test in June should confirm that I have a 98% chance of being rid of it completely. I will come back here to post the results when I hear them......

For those who run across this blog and are new to tx here is what I've learned:

This blog has been a journal of my dealing Hep C and it's treatment through 12 weeks of a trial drug called RO4588161 along with standard care for the remaining 48 weeks.

The trial drug itself worked in my case. I cleared the virus in less than 2 weeks. The bad news is, however, they had to scrap the drug and start over from scratch....they've decided that the side effects are too dangerous to continue.

If you've come to my blog searching for answers what you'll find here are experiences. Many of those experiences come from dealing with the trial drug and many come from the standard care of Interferon and Ribavirin.

If you are faced with this journey that I've gone through, know this....you can do it. There are times that it's not easy, but it is do-able.

These are a few things that I have learned through trial and error:

1. We are all different. None of us can know how we'll feel or what side effects we will have until we begin tx. My experience was a battle. Others have gone through tx with just a few side effects. Tx can effect us all differently....some have it hard, some have it not so hard.

To say it will be easy, would be wrong. You will probably have bad days and good. You must always remember that it is worth the battle to be able to live the rest of your life out with a healthy liver.

2. Drink Water. Drink lots of it. The more the better. These drugs dehydrate the body at an unbelievable rate.

3. I arranged my dosage schedule so that I take the Interferon on Friday nights so that I have the weekend to recover. Mondays are still a little ruff but I have only missed about a total of 8 days throughout my entire tx because of feeling sick. I've missed more work due to Doctor visits than I did because of feeling bad.

4. Take Ribavirin with fatty foods. It cuts down on the nausea and it also absorbs into you body much better.

5.While the flu virus and cold virus is very hard to catch while on tx (mostly because the drugs you take are very powerful antiviral drugs), infections become easier and easier to get as you go further into tx and your white blood cell counts fall (If your White Blood Cells drop).

6.Wash your hands often and use hand disinfectant as often as possible to cut down on your exposure to Bacteria.

7.In the winter use a vaporizer to keep your sinus' from drying out making them susceptible to sinus infection

A fever is a big sign that you may have an infection....call your doctor if you run a fever!

8. The hell with your hair. If it's going to fall out...it's going to fall out. If it just thins, change your hair style. If you get bald spots, wear a scarf. What do you do? It is what it is.

Mine fell out drastically due to the combination of the highest dosage of trial drug, Interferon and Ribaviron. Yours may not be anything more than thinning.

Also, 3 months after tx has ended my hair hair has grown back beautifully!

9. Painful dry skin....I tried everything (hundreds of dollars went into looking for relief) and the only thing that I found that helped (Actually Rosie found and Jimmy shopped for) is a product by a company called African Royal, Hot Six Oil. It's great! I use it literally everywhere....hair and skin. After a shower, before drying off I would apply it all over including my scalp. Then pat dry. Fantastic Stuff!

10. Drink lots of water.

11. Fatigue.....You can't ignore it because ignoring will only make you pay harder. Learned how to manage it. Sleep as much as possible. Sit as much as possible and rest whenever you can. Do not push because it will push back harder. When it pushes back you will pay!

Live by listening to what your body is telling you.....

12. Make no plans. For 48 weeks plan nothing. You do not need added pressure of keeping dates and you will not know how you feel on any given future date.

13. Beware of "Riba-Rage". You'll know if you get it. It's just the Ribavirin. Some people get it ...some don't. Me? Yes I had it but not as bad as other people that I know. What I did get of it reminded me of having bad PMS. Major PMS. But I was able to control it by reminding myself that it's just the drugs.

If something got into my head I began to learn how to tell myself that if it's still there tomorrow I'll open my mouth.....9 times out of 10 it was gone by the next day and I was thankful for controlling my mouth because I knew then that it was all in my head.....put there by the drugs.

14. No matter what, no matter how bad it gets, always remember that your partner is going through it too. How hard this must have been on Jimmy. I'm lucky to have such a wonderful beautiful Husband!

I believe now that being sick was the easier part. I knew when I was really bad off.....but I could see it. I didn't have to really deal with it the way he did. God Bless him for loving me so deeply.

15. Do not skip dosages unless your Doctor says so. There have been so many times that I looked at those drugs and argued with myself about taking them. In the end I always concluded that it wasn't worth skipping. Geno type 1b hasn't got a high chance of beating this virus to begin with. 48 weeks is your best shot.....don't waste them by skipping anything.

It's just Not worth it!

16. A bag of frozen peas is the best thing for a tx headache. I'd use that and I'd take 1 ibuprofen and 1 reg. strength tylenol. The combination seemed to help. ( check with you Doctor about the ibuprofen and tylenol before trying this) My friend Teah gave me the idea of frozen peas! LOL Works great.....just mark the bag in the freezer though...lol! Frozen, thawed, frozen, thawed peas do make a good dinner idea!

17. Look at the day. Don't look back and don't look forward. Just look at the day.

18. Drink Lots of water.

19. For me tx side effects have no rhyme or reason. I used to try to figure out why the bad days where bad and why the good days where good. One thing is for sure....I take my Peg. on Friday nights, Saturday and Sunday are always hard....the rest of the days do whatever they wish and there's no telling what they'll do or why.

20. Go to the dentist before starting tx to avoid infection later in tx.

21. Go to your eye Doctor before starting and he/she will have a good idea of what the drugs are doing during tx if you run into a problem. They'll have something to compare to.

22. Eat even when you don't feel like it. I spent weeks eating peanut butter on a slice of bread when I couldn't stand anything else. All in all I lost a total of 22 pounds during tx. I started out at 138 lbs. and when it was all said and done I weighed 114 at 5'7".

Now, 3 months post tx I'm back up to 122 lbs....So I'm on my way back! : )

23. Did I mention to Drink lots of water?

24. Once again, I know I said this in the beginning of this list but.......Everyone reacts to tx differently. There is no way to know how you'll react until you go through it.

The side effects that I've had, you may not have at all.

25. YOU CAN DO THIS!!!

I started this Blog almost 2 years ago. I started it for 2 reasons. First was because there isn't any type of support in my community to deal with Hep C.

Second, because I was inspired and touched by 3 people who had fought this little dragon before me. Teah - 72 weeks of tx, Terry - 48 weeks of tx and Iris - 24 weeks. 3 of the most incredible people I have ever met!

Without them I would never have started the journey that very well may have saved my life.

I've met a lot of people along the way. Karen, Sharon, Dorene, Sean, Lisa, Rosie, Robin, Gary, Emilo, The Nomads, And so many many more. Everyone of them have not only touched my heart but they've touched my soul.

All of these people brought me through the darkest moments of my life. I will forever be grateful to the Hero's who went before me, and with me and stood beside holding me up while I went through tx.

From the bottom of my heart and soul I thank you all!

May the Angels watch over you and God bless you.

And may all of your days be "Just Ducky!"

With All My Love
Laurie

Week 6 roller coaster

2009-02-20T07:09:00.002-05:00

Wow what a trip this week has been!

On Tuesday I called Hershey and they told me to go to my Family Doctor to have the Thyroid checked.

My family Doctor set up urgent appointments for me to go to the Endocrinologist in Wilkes-Barre. I saw him on Wednesday.

He told me that I had Graves desease and when I asked him if it could just get better on it's own he said that might for a short time, with treatment, but then it would get worse again. I'd have this problem for the rest of my life.

When I asked him if it could just be aggravated from tx he said that he had only seen 1 other person in his 30 years of practice that had a problem like this and had it resolve on it's own.

He said that I needed to make a decision. Go through a treatment until it gets better....wait for it to get worse again and go back on treatment.....etc. spending my life back and forth between treatment and periods of remission, or taking Radioiodine to kill off my thyroid and spending the rest of my life on Thyroid replacement medication.

We where leaning more towards the Radiooidine because it just seemed like a way to resolve this long term.

He then sent me for more blood work and an Uptake test, marking both as urgent. I left his office, went to the lad and then to Nuclear Med to take the radioactive pill for the Uptake test that I had to return for the scan 24 hours later. After the scan (on Thursday) the Doctor was to prescribe the medication to begin the Radioiodine.

I went back to work and called Hershey to fill them in on what was going on. I called my research nurse who then passed it on to Dr. Smith.....who in turn began trying to get a hold of the Endocrinologist. Dr. Smith and a Endocrinologist at Hersey both felt that my Thyroid would resolve itself saying that this Was a side effect of my tx. She wasn't able to find my Endocrinologist and told me to have him page her.

So on Thursday I before I went to the scan, Jimmy and I stopped at his office and asked him to call Dr. Smith. While he was on the phone waiting to talk to Dr. Smith he told me to go for my scan and then have the Nuclear Med. Department call him. So off we went....

After the scan the Doctor called the Nuclear Med and they put me on the phone with him.

He started the conversation off with "I believe now that you don't have Graves Desease and you are only the second person in my 30 years of practice that I've seen with this" He told me that I have Hyperthyroidism because of tx and that in about 6 weeks that will turn into Hypothyroidism and then it will resolve itself. It may take as long as 9 months to run it's course.

I have to increase my Beta Blocker to control my heart rate and tremors and I have to have blood work every 2 weeks until it runs it's course. But at least I'm not loosing my Thyroid.....yet.

After all of the glands in my neck have swelled and then resolved themselves, it makes sense to me.

Have you ever felt like you're in the ocean and swimming toward shore....just to have a wave come and sweep you back out to sea......then starting to swim back to shore again and yet another wave comes and takes you away.....I think I'm getting tired of swimming and all that I want to do is just lay on the beach and rest for a little while.........

Yep....and then it all went ooops!

2009-02-18T19:31:00.002-05:00

So about a week ago a new lump showed up on my neck next to my throat. Right away I thought "well it's just another lump and it'll go away". By Monday I knew it wasn't just going away and I called Hershey.

It's my thyroid. My lab work for had just come in to Hershey over the weekend and it showed my TSH at .03. The reference range is .35 - 5.50. They think that the Interferon has kicked my thyroid out of whack. So off I went to Endocrinology.

Now everything is crazy. I guess we'll see where it goes from here.

I go back tomorrow to complete a test that was started today.

Hey....If I loose my thyroid it will still be worth it to save my liver.

I'm still UD.

Recovery - week 5

2009-02-13T06:56:00.002-05:00

I know it's been a while since I posted to the blog. Between my computer having a virus, with the end result being that we had to buy a computer, and then my having to reset up all of our software, website and plotter there just didn't seem to be much time for blogging.

The good news is that I went to Hershey on Monday and my VL is still undetectable. My blood counts are all slowly coming back up and I'm feeling sooooo much better.

The fatigue does tend to still hit me here and there but nothing like it used to. Doc say's my body is still trying to adjust.

My hair has been growing back....but my scalp has yet to fully heal. I can't wait until I can actually go outside without a scarf on my head.

The dry skin still seems to be hanging in there. At least it's not as bad as what it was while I was on the drugs. I just doesn't seem to want to clear up yet.

According to her Roche is starting a new trial with a drug that is fundamentally the same as the trial drug I was on. So I guess they haven't totally thrown the trial drug out. I think that's good because I believe that the drug works.....they just really have to adjust it.

I go back to Hershey for my 8th, 12th and 24 week visit and then I'm done. Thank God because I really need to get past all of this. It's been a long and hard road.

Have a Wonderful Weekend!

Recovery

2009-01-27T07:28:00.002-05:00

It getting better all the time. The fatigue and brainfog are getting less and less noticable. Even waking up is a treat.

I'm learning more and more that there is life after tx.

I know I'm not posting as much as I used to... my darned computer has a virus and I'm waiting for Dell to ship the new on.

I get booted almost every time I come here to post.

Have a Beautiful Day!!

Recovery - Day 9

2009-01-21T06:45:00.002-05:00

I'm actually starting to feel human again and it's the simple things that I'm really enjoying.

While on tx my life was about work and bed. I was in bed by 7:30 or 8, up for 6:30 and in between I went to work. That was my life.

Now I'm able to see 10:30 or 11:00 and waking up in the morning feels so much better. It's so nice not feeling like I want to sleep my "time" away.

The brain fog and fatigue continue to become less and less every day.

I look forward to next week. That's big doin's for me....It's been a year since I could look forward.

Life is finally Ducky!

Recovery - Day 5

2009-01-17T08:52:00.002-05:00

Even though the Fatigue and brain fog is still hanging around a little bit, Man oh Man am I starting to feel better!

The abscesses on my head are healing up nicely....they itch like hell but that's a good sign. The swollen glands in my neck from the abscesses are starting to go down too.

Now this is starting to Feel like recovery!

I took my last Nuepogen shot on Thursday night and now I have to hear from Hershey about whether or not I can stop taking it. How nice it would be to be finally done with all injections!

WOOHOO! Life Is Getting Good!

Have a Wonderful Weekend Everyone!

Recovery - Day 4

2009-01-16T07:41:00.002-05:00

I waited almost a year to say these words......

THANK GOD IT"S FRIDAY!!!!!!!!!!!!!!!!!!

:)

Yesterday was pretty good. Each day seems to be a little better than the day before. With the infection and pain breaking up and the brain fog starting to slowly lift, this weekend should be nice.

I wound up with some bone aches from the Nuepogen shot last night but even that can't get me down today.

I look forward to next week. Life is getting better all the time!

Enjoy the Weekend Everyone!! :)

Recovery - Day 3

2009-01-15T06:59:00.002-05:00

Yesterday wasn't too bad.

The pain on my head is finally starting to let up. Itches like crazy but that's a good sign. My upper back is following my heads lead. Which makes sense because I think my back was caused by the pain on my head.

Even the Nuepogen behaved itself and didn't really cause much bone pain! How nice is that!

This morning waking up is slow but the further along I get the better I feel.

By this weekend I should be flying high feeling soooo much better.

Only problem so far with the day so far is that I'm going to have to go out. It's 8 friggin' degrees outside! brrrrrrrrrrr Tomorrow is supposed to be colder!

Wish we where going to Vegas this week! lol

Have a great day everyone!

Recovery - Day 1

2009-01-13T17:25:00.002-05:00

Wow is that a trip!...."Recovery - Day 1"....lol it's even fun to say!

We're back from Hershey with a script for Keflex to take care of the abscesses. This stuff should knock the infection out. Thankfully so since not only has it been painful but it seems to be causing the glands in my neck to swell. 10 days of taking 1500mg. a day should definitely do the trick.

I had the pleasure of taking all my leftover drugs and my study log back. It was such a pleasure to hand it all over! Of course it would have been more fun to throw it all into the garbage...but I had to resist the urge, they wanted what ever I didn't use back. Party poopers!

I found out today that I might only have to run one more week of Nuepogen and Procrit. If my counts come back not too bad that'll be it! My fingers are crossed.

It's a very cold and dreary day outside but to me today was the brightest and sunniest day in the past year!

After getting back from Hershey I took my daughter to the DMV to get her drivers test for her very first drivers license. Because I drove her I had to hand over my license.....low and behold mine expired! Guess who had to get her license renewed.....yep! I'm now the proud owner for the next 3 years of a license that has a picture of me wearing a scarf on my head! Doesn't that stink! lol....life is just not fair!

But the good news....Ta Da Da Dum....Crystal passed! YeeHaw!!! Congratulations Crystal!!!! Good Luck World!

What a day! Time for me to go crash on the couch.....

Have a Great Night Everyone!

:)

Day 335

2009-01-12T06:37:00.002-05:00

Well that's it! I'm done. Now it's time for recovery.

I think that recoverying from the 2 abcesses on my head are my biggest hurdle to get over first. Once their gone I should feel so much better.

For now my head and neck are killing me and I'm just wiped out from them and the last Interferon shot that I took on Friday.

With no more Ribaviron knocking me down this week I'm sure that I'll heal much quicker.

Anyway, I know that I just have to make it through this last little bout and things will get better.

I go to Hershey tomorrow. Maybe theres something that they could do to help speed this all along.

Have a Nice Monday Everyone!

Day 333 - 2 to go

2009-01-10T06:51:00.002-05:00

My last shot was last night and I almost didn't do it. I really felt like throwing it into the garbage.

In the end I was a good little girl and took my medicine. Thank God I'm done with the interferon.

Yesterday was painful. The abscesses on my head are driving me nuts. But I guess they have to run their course. Hopefully they start letting up over the weekend.

2 more days of ribaviron and a few more shots of Nuepogen and Procrit and I can get this last year behind me.

It's Saturday and they're calling for up to 8 inches of snow today. That's fine.....let it snow because I'll spend the day on the couch.

I can't wait until life gets better! I'm finally at the end!

Thank God!

Day 331 - 4 to go

2009-01-08T06:49:00.002-05:00

Yesterday morning wasn't too bad. By afternoon it became uncomfortable.....the kind of uncomfortable that makes you constantly shift your position trying to get comfortable. By evening I was ready for the day to end.

I came home, ate dinner with Jimmy downstairs at the bar and put the Poker Scores into excel for our Wednesday night Texas Holdem' players. Then I went up stairs watched a little tv until I couldn't stand it any more. I took the Nuepogen and Procrit shots, ate a vicoden and a sleeping pill and headed off to bed.

I can't wait until our evenings become normal again.

This morning waking up is slow going. Thank God for coffee. I'm a bit achey but I'm sure Ibuprofen should handle that. Hopefully my upper back doesn't decide to chime in later this afternoon like it did yesterday.

4 more days to go. Part of me wishes I could just sleep through them.

It's Thursday so I have another Nuepogen shot tonight and one more Peg. shot tomorrow along with 16 more Ribavirn. I can handle that!

I feel like boxer at the end of the final round. I'm beat to hell and back waiting for the bell to ring.

Day 330 - 5 to go

2009-01-07T06:38:00.002-05:00

Yesterday was just another day of eating Ibuprofen all day at work and grabbing a vicoden as soon as I got home. My upper back and head screamed all day.

I couldn't bring myself to take the Nuepogen shot last night with the pain that I was already in. I just couldn't stand the thought of adding bone pain to it for this morning. I'll take the Nuepogen tonight when I take the Procrit.

I think I made the right choice because after sitting for a while with the heating pad, taking a couple of sleeping pills and going to bed, waking up this morning the pain seems to be better than it has been over the past few mornings. I'm actually sitting here at the computer without being hunched over to one side.....not to mention that I can actually turn my head without having to turn my whole body. (hopefully I'm not jinxing myself)

Maybe if I have this one more day to recuperate the bone pain won't double up with the rest of it.

I just want to make it through the day without eating Ibuprofen all day and having to take a pain killer as soon as I walk in my front door. I seriously Hate taking drugs!

If ever I needed Ducky to show up it's now!

5 more days to go....Come on Ducky do an old friend a favor!

Day 329 - 6 to go

2009-01-06T06:44:00.002-05:00

Man oh man yesterday was long. I spent the day fighting with myself about taking Vicoden while I'm at work. I already have enough brain fog and I didn't want more. In the end I stuck with Ibuprofen until I got home. The minute that I was in the door I grabbed a pain killer.

Between the abscesses on my head and my upper back killing me, I just sat and struggled the day away.

On the way home I stopped at the drug store and picked up some of those stick on hot pads. Which by the way really don't get very hot and where probably a waste of money. I wound up using my old hot pad up until I went to bed and then I stuck a couple of the stick on pads for the rest of the night. I popped a couple of sleeping pills and went out for the count.

This morning waking up my head is killing me, but at least I think my back might be a little bit better. Hopefully I'll be a whole lot better before tonight's Nuepogen shot. The thought of bone pain on top of the pain I'm already in makes me want to skip it....but I know my blood counts can't afford that.

Jimmy and I have changed our plans a little. We've decided to go to Vegas the first week of April and hold off going to Disney until Fall. We fly out on April 1st and back on the 7th. The Glass Craft Expo will be out there and neither of us wants to miss it. Last year I was so sick all of the time that I really couldn't enjoy so many things that I wanted to. This year will be a blast! I'll be off of tx and detoxed by then. So look out Vegas!

6 days to go.

I hope today gets better....

Day 328 - 7 days to go

2009-01-05T06:53:00.003-05:00

It feels like tx is trying to get it's last lickin's in before the end of the final round.

I've felt like crap all weekend long and this morning is no better.

There are 2 new abcesses on my head from dry cracked skin and my upper back is killing me to the point that I've taken Vicoden. I hate pain killers and I hate Vicoden the most. It kills the pain but makes me feel more like shit.

I hope this doesn't last the whole 7 days.

All I can do for now is just consentrate on getting through work this week and hope that the pain goes away.

Right now though, I'd rather go back to bed.

Day 325

2009-01-02T10:18:00.002-05:00

Well the Holidays have definitely caught up to me. I'm very thankful that I have 4 days off of work in a row to recuperate.

Hopefully I can get my body to cooperate with me before work on Monday. I seem to have aches and pains everywhere. Just sitting and typing is uncomfortable.

There's only 10 days left. I'm sure I'll get through them just fine.

It's Friday and tonight is Peg. night. I have this one and one more and then that's it.

I'm on my final count down...

10

Day 324

2009-01-01T09:00:00.004-05:00

Happy New Year!!!

Day 323

2008-12-31T07:12:00.002-05:00

These last days are turning into the longest. Every time I look at those pills or those needles I can't help but think "isn't this over with yet?"

I know....there's only 12 more days to go.....

I'm not feeling that bad really. It's just that the side effects are really wearing thin on my nerves. Maybe it's just the anticipation of not having to do this anymore.

I can't wait until the day comes that I don't itch....that I'm not tired from walking out to my car....I can't wait for the day my bones and joints don't ache and I'm not swallowing ibuprofen until my ears ring so loud that I have to have everyone repeat what they're saying.

Yes I'm whinning. It's either that or I'll explode.

You know it gets to the point, after tx has been so long, that you start to hate hearing yourself bitch about how you feel.....but most of the time you feel like shit so how do you not bitch?

I try not to. I try to keep it to myself. I imagine, even though he'd never say so, Jimmy has to be tired of dealing with how I feel also.

12 more days.

Just 12 more days.....

Day 321

2008-12-29T06:47:00.003-05:00

14 days to go. Finally I can see the light at the end of the tunnel.

Yesterday was kind of ruff....I think last week has started catching up to me. Lot's of fatigue and joint pain. I went to bed early last night trying to escape it and I think that helped a little.

This morning waking up is slow and my brain fog is pretty heavy, but at least the joint pain is much lighter.

I did manage to finish setting up our TV and all of it's components. Wow was that a trip! What ever happened to plugging stuff in and having it work? Took me 2 days to set it all up correctly with brain fog. It's horrible when you read a manual 4 times before being able to comprehend what it's trying to tell you to do.

Now we'll have the Geek Squad come in with their computers to calibrate the tv and sound to fit the room and it will be perfect.

Monday....ugh....back to work. At least this is a 3 day work week. I'm off for New Years Day and the day after.

2 More Peg. shots to go.....56 more ribavirin..... 12 (plus whatever it takes to get my counts back up) more Nuepogen and Procrit shots.

I can't wait until this is all over.....

Day 319

2008-12-27T09:02:00.006-05:00

Well Christmas is finally over. All in all it was a wonderful week!

Jimmy worked pretty much non stop for the past 2 weeks making 2 lamps for Nick, Jen and Amanda. I helped where ever I could drawing the patterns onto glass, grinding the pieces and wrapping them in foil....but still Jimmy stayed up night after night all night long to finish them. 75 hours of work in each lamp!

It was worth it.....they came out beautiful!

Christmas Eve Nick and Jen came over to hang out with us for a while and to exchange gifts. I loved the look on their faces when they opened the box! It was priceless.

Christmas morning turned a little ruff on me but I downed some Ibuprofen and a cup of coffee and got my body moving. I didn't exactly get my house cleaned as well as I would have liked but it was passable. I did get dinner together and that actually turned out pretty good!

All the rest of the kids came for Christmas Day along with my Father in law and Charlie (Crystal and Cory's Dad). It was a nice house full!

My kids and their Father actually found me a dish washer for the counter top! lol....it's a Great present for me....but it's also a nice present for the kids. They don't have as many dishes to do now! lol. I love it and it fits perfectly.

After dinner and after setting up the dish washer, we all sat down and played a couple games of UNO minus Jimmy who had to spend most of the day laying on the bed due to throwing his back out and having a hangover to top it off. Poor guy killed his back making the lamps and then he went out on Christmas Eve to celebrate completing them on time with his Daughter and a couple of friends. He paid dearly Christmas day.

Anyway, hanging out with all the kids and playing cards was so much fun.

Christmas Day was wonderful (minus my sweet husbands pain).

Yesterday Jimmy and I ventured out to go to Best Buy to find our Christmas present to each other. Started out to be the wrong day to go but then it turn out great! Traffic was a killer! People where everywhere. It was nuts! Best Buy was sold out of everything that we wanted and we decided to head back home to a closer local store instead. On the way home we ran across Rex's and almost didn't stop but then turned around and went back.

We got a nice big Plasma TV with a stand and a new receiver for our surround sound. We tried to get a Blue Ray player but they were out of them.

It was time to get rid of our old beat up big screen tv and it turned out to be a perfect present for the both of us.....although this morning I still have to finish setting it up. Oh what insanity that is!!!! What ever happened to just plugging stuff in and having them work? no no Now you have to run configurations and set ups on each component. Takes a Rocket Scientist just to get the tv to work with a receiver! lol

Last night was shot night and yep I'm paying this morning for having such a wonderful week. Everything hurts and fatigue is kickin' my ass. Thank God I have today and tomorrow to recuperate before I go back to work on Monday!

16 Days to go.......

Have a Beautiful Day everyone!

Day 317

2008-12-25T08:34:00.002-05:00

Merry Christmas!

Day 315

2008-12-23T06:40:00.002-05:00

Tx gave me a birthday present....a day that feels pretty ok. Outside of the cracked ears that I have again and some fatigue, I don't feel half bad!

The day outside is turning out to beautiful as the sun comes up and I think it's actually going to get a little warmer out. It's been hanging out at around 5 degrees and it's headed to the upper 30's today.

The day at work shouldn't be bad. We have our company Christmas lunch and it's not really a big work day because most other companies that we work with will be doing the same.

Jimmy gave me a gift certificate to a local golf course for my birthday. Part of my "after tx to-do list" is to take golf leasons. Last year for Christmas I got a set of really nice golf clubs and I haven't gotten the chance to use them yet because of treatment. I figured that when I do I wanted to learn the game a bit better....thus the golf leasons. By Spring I'll be all ready to put both the clubs and the certificate to good use!

20 days to go! :) I can't wait!

Enjoy the day!

Day 314

2008-12-22T06:51:00.002-05:00

Each weekend I find my self bracing for the Interferon side effects and weekend after weekend they come. But every once and a while, for no particular reason, the sides decide to take it easy on me.

This was one of those weekends. Ibuprofen killed off most of the body aches and my fatigue level was low enough to ignore most of the time.

With Christmas this week Jimmy and I needed it! (I'll tell you why later....shhhhh...it's a secret)

Boy would it be nice to have the remaining 3 weekends turn out like this past one. I won't hold my breath....but it would be nice.

This is a 2 day work week and I can't be happier to see it come. Today will be nuts since I have only one day to complete payroll instead of the usual 3. It should make the day go faster.

Tomorrow is our plant Christmas party so that should make tomorrow go fast also.

Oh yeah.....and tomorrow is also my 43rd birthday. This will be the very first time in my entire life that I've had to work on my birthday. Usually when it falls on a work day I'll take a vacation day for it. This year I can't see waisting a vacation day while on tx. I'd rather save it for after I'm finished and use it for something fun.

21 more days to go!

Have a Beautiful Day!

Day 311

2008-12-19T07:01:00.002-05:00

How can a week be long but the Fridays seem to pop up back to back? Makes no sense I know.....

Yep It's Friday again!

I'm feeling pretty good though. That's a good sign going into the weekend with a Peg. shot due tonight. Maybe this weekend won't be so bad. Other than that same ole brain fog and slightly hung over feeling...the rest of my body seems to be somewhat happy. My fingers are crossed for the weekend.

I haven't heard anything from Hershey yet on my Lymphocyte count from Tuesday. I won't hear about the CD4 count until early next week. I wonder if they'll call today, knowing that this is my shot night, if my absolute count is still below 500.

24 days to go.....

Have an Awesome weekend!

Day 310

2008-12-18T07:00:00.002-05:00

Thursday. I woke up this morning feeling pretty ok. It's kind of nice to wake up in the morning and not have body aches for once. Brain fog is hanging around a little but hey I can't have everything!

Ribavirin has been playing with my mind again I think. I'm getting aggravated at the little things again. Things that would usually just get a second of thought are really irritating me lately. It's like PMS on steroids!

For instance, my morning ritual is to go online and read our local newspaper. In the paper there's always an article called "Dear Dr. Donahue". This mornings headline for his article is "Hepatitis C often has a positive prognosis".

It reads:
DEAR DR. DONOHUE: Please save my life. I was diagnosed with hepatitis C five years ago. Tests now say I need treatment. I am scared to death of treatment, about which I have heard horror stories. I have an older husband who will not make it without me. I feel great and have terrific energy. I am 59. Is there something other than the standard treatment I can take? – S.D.
ANSWER: Infection with the hepatitis C virus leads to chronic liver infection in 85 percent of patients. However, illness doesn’t appear until 10 to 20 years after infection. At that time, about 20 percent of infected people develop liver cirrhosis, and 1 percent to 4 percent come down with liver cancer. That means 75 percent of patients do not develop serious liver disease. Treatment is necessary when evidence of the virus can be found in the blood and when the liver shows changes that indicate cirrhosis will be a likely outcome. Most of the time, that’s determined through microscopic examination of liver tissue obtained by a needle biopsy.

Who has given you the horror stories of treatment?

It’s not a picnic, but it isn’t as terrifying as it has been portrayed to you.

Ribavirin is one of the drugs used. Its worst side effect is anemia, a drop in the red blood cell count. Stopping the drug just about always returns the count to normal.

Peginterferon is the other drug used in treatment. Its most common side effect is flulike symptoms: headache, muscle pain, fever, nausea and vomiting.

Appropriate medicines can control these symptoms.

It also can produce a drop in both the white and red blood cell counts. It has aggravated depression and given a few people thoughts of suicide. Hair-thinning is another possible side effect. The list of potential side effects is long. Most resolve when the drug is stopped. And most patients complete therapy without having to greatly modify their activities during treatment. Peginterferon is injected under the skin once a week. People learn how to inject themselves. There are no other effective treatments.

"Appropriate medicines can control these symptoms"??? Yeah really? And by the way I think he missed a few side effects (like Brain fog and Major FATIGUE!)... not to mention that the few "Appropriate Medicines" that they do give come side effects of their very own.

"And most patients complete therapy without having to greatly modify their activities during treatment." - What? I'm sorry but outside of my dragging my ass to work, which is a very difficult thing to do on tx, my life is about laying on the couch or going to bed. I have no life and I don't know anyone on tx who does. "Without having to greatly modify their activities"? - What the hell ...my whole life is greatly modified!

Oh yeah, and I don't think that he mentioned that tx can last up to 48 weeks.....or even 72 weeks like Teah, for some Geno Types.

Don't get me wrong....Tx is do-able. But when someone just blows it off as no big deal it makes me want to inject their ass with interferon and feed them ribavirin for a couple of weeks just so they can get a feel for it before they nonchalantly blow it off as no big deal.

I realize that Doctors try to sway patients toward tx and not scare them off. The more that people get treated the less people there are in the world carrying this virus around and spreading it. When asked a question like this, I just don't understand why they try to pass all of the side effects of tx off as no big deal.....had I gone into tx thinking that, I would never have made it past week 2. Being informed and prepairing myself for what I was going through made me not panic when I started feeling like hell fell on me.

Is tx do-able? Yes

Is it worth it? Hell Yes.

Is it even slightly easy? F*** No!

Yep.....that's my Riba-rage session for the day!

Tune in tomorrow.....same bat time....same bat station!

Day 309

2008-12-17T07:07:00.002-05:00

Hershey went ok yesterday. It'll take a week before I hear back on my blood counts. I should hear back from them by around next Tuesday. My Research Nurse is still leaning toward my tx being stopped before the 48 week mark. I think everyone is waiting for me to end tx so that we can find out if my counts return. They say that I would never have made it this far in tx without the Nuepogen and Procrit....but at the same time they don't really like that my counts have run so low even though I've been taking the Procrit and Nuepogen. While taking them, my counts should be much higher. So the question is - Will my counts be able to bounce back when I stop tx?

I'll be on Nuepogen and Procrit until they do. I'm sure they will. I have a resilient body. It's bounced back easily from everything else life has thrown at it.

I didn't have to do the interview with the quality of life research doctor. He filled his quota for information before I got to Hershey yesterday. Still I'd love to know where he'll go with the research.....

It's Wednesday and I think the brain fog is much better today then it has been. I took Nuepogen last night and my bones ache a bit, but it's nothing that good ole ibuprofen won't settle down. This will just be a slow moving day that's all.

Everyone is right about the last few weeks being so hard. I'm not sure if it's because all of these drugs are so built up in my body that it's wearing me down....or is my body just simply starting to scream out for the end to tx.

26 more days to go....

Enjoy the day!

Day 308

2008-12-16T06:52:00.003-05:00

Can you believe that Christmas is next week already? I got almost all of my shopping done....online of course. All I have left to do is to grab a few things for stockings. That's going to require going into a store. At least it'll be a short trip.

Today's a Hershey day. Gotta make sure my blood counts are still holding their own.

I'm also going to spend some time talking to a Doctor who is researching the quality of life for a Hep C patient. I can't help but wonder what he'll do with his research....

It's probably not a good day to talk to this guy....brain fog is thick and my brain doesn't want to work it's way through it for some reason today.

Maybe by the time I get to Hershey it'll be better...

Have a Good Day Everyone.

Day 307

2008-12-15T06:32:00.002-05:00

It's MOnday already and the weekend was a total washout.

Outside of drawing some patterns on glass and wrapping some Christmas presents (thank God for online shopping), I spent the whole weekend on the couch.

4 shots and 29 days to go....I wonder what it will be like to have my weekends back again. I miss them.

Last night I felt the worst and I wound up in bed at 6:30. I took a sleeping pill in hopes that the sleep would bring me a better Monday morning. I think it helped a little. Maybe if I get my body moving I'll shake some of it off.

Have a nice Monday everyone.

Day 304

2008-12-12T07:25:00.002-05:00

It's Friday again isn't it?

Yep.....it's Friday.

Good news is that I'll be one more shot down. Bad news is that I feel like crap.

My body aches don't seem to want to go away this week and now with another Nuepogen shot under my belt from last night my bones are aching in unison.

I thought that maybe the sleeping pills where starting to cause me to feel hung over in the morning so I didn't take any last night. It was a big mistake because I couldn't fall to sleep until almost midnight. So here I am this morning still feeling that hang over feeling along with the lack of sleep on top of the body and bone aches.

whaaaaaaaa

Instead of the sleeping pills I'm starting to think that I simply may not be drinking enough water again. It's sometimes something that I forget to do at work when I'm busy. I'll have to make a conscious effort to count how much I drink.

There is always that "tx sides do what ever they want to do" thing. But I still have to have faith that there's something ....anything that I can do to make myself feel better especially since tonight is Peg. night.

For now I'll down a cup of coffee along with some Ibuprofen, take a shower and make my very old feeling body start to move.

34 days to go. Iris and Terry are right the end of tx is starting to feel hard again.

I hope I snap out of this.....

Have a Wonderful Friday Everyone.

Day 303

2008-12-11T06:56:00.002-05:00

Yesterday was just another day of aches and pains .....nothing that Ibuprofen couldn't tackle. Although I have to try to not take it so much. I try to take one at a time to space them out. When joint aches combine with bone aches it becomes a little hard not to take too many ibuprofen.

This morning the bone aches are gone and the joint aches are tuned down a few notches, so hopefully today will be easy on me.

The weather outside is horrible. They're calling for major ice. It's been icing on and off with rain pretty much since around 2 am but hasn't really hurt the roads yet. The rain and salt seems to be washing the roads free of the ice so far. Hopefully if the roads are going to get nasty, they get nasty before I have to leave for work and not while I'm at work. I've been stuck there once before and I had fun waiting it out at a close by bar.....but I can't drink now and really don't want to hang out there drinking soda. lol

Have a Nice and Safe Day everyone!

Day 301

2008-12-09T06:22:00.002-05:00

It's Tuesday and the body aches and pains are still hanging in there along with some major brain fog.

It's not so bad that I can't function. It's just bad enough to make me feel like crap and trying to think straight is a fight.

Because it is Tuesday I would have thought my little drummer boy would have let up by now...but nooooo the little jerk has torment me for as long as he can.

I'll grab the ibuprofen once again to shut him up. The brain fog I'm sort of stuck with.

One nice thing about it being so cold out right now is that the crisp cold air temporarily snaps me out of the fog. I wish I could just keep a bucket of ice water next to my desk at work.

Yesterday I was almost faced with having to calculate a few very long lists of numbers....it struck terror into my head! It was all over a spread sheet being off by 16 cents. I knew why it was off....I just could think clearly enough to reason it out. It was a frustrating half hour of sitting there and talking it out loud before I was able to make my brain cooperate. Thank God because the last thing that I needed was to try to run long rows of numbers through a calculator! I would have been there all night starting it over and over again and in my head I knew the Exel was calculating on the spread sheet right....the total was -16 cents for a reason. Brain fog was just blocking me from the explanation.

There are times when a work day is really ruff. I am so thankful that I work with an incredibly understanding friend who I probably drive nuts sometimes with my rambling. But Susan is always there helping me through it. I couldn't have made it through work without her support.

Tuesday...Nuepogen night....with and hope and a lot luck, I'll be rid of the body aches and pain before the Nuepogen brings on the bone aches. It sucks to get both at the same time.

Hey! I broke 300 days! 34 more to go....

Have an Awesome Tuesday everyone!

Day 300

2008-12-08T06:49:00.003-05:00

On Saturday I got a call from my Hershey Doctor checking to see how I was doing with the restart. That's a first.

For whatever reason this shot sent my little drummer boy thumping up and down my body. Aches and pains everywhere. It was an ibuprofen weekend.

This stuff is so unpredictable. I would have thought it would be easier on my since I hadn't taken the shot for 2 weeks. You can never tell what it's going to do....

I did manage to help my son get the tree up on Saturday night and on Sunday I took the morning to decorate it. Christmas Tree and stockings are the extent of my decorating this year....Simple, Pretty and easy to put away.

Other than a few loads of laundry, I stayed couch bound for the rest of the time.

This morning the little drummer boy is gone but the hangover and brain fog have taken hold. I'm sure that it'll get better as the day goes on.

Oh yeah......and I got a lot of Christmas shopping done online yesterday also. I'm actually almost done.

Have a Nice Monday everyone.

Day 298

2008-12-06T07:49:00.002-05:00

Yep it's Saturday morning and I know I took Interferon last night.

Outside of getting the Christmas tree up today, I think this will be a couch weekend.

On a positive note, after more than a full week of having a gigantic painful abscess lump on the back of my head, it finally decided to relieve it's pressure yesterday (trying not to be gross) and this morning it feels more like a sore spot than an angry little drummer boy with a pick axe. Thank God I was actually able to sleep on my back last night!

What do I have.....5 more shots to go......37 days.

I'm getting closer.

Have a Nice Weekend everyone.

Day 297

2008-12-05T06:43:00.002-05:00

Herrrrrrre's Friday!

Time to jump back in the Peg. saddle again. YeeHaw!

I'm not going to think about it. It's time to get back to finishing this off.

Not that is does me any good to know, but I think I've figured out that it's the Ribavirin that dries my skin and scalp out so very badly. A week into restarting it my scalp has gone right back to needing the Hot Six oil again. Dry itchy scalp is not good on the sore as hell lump that I have on the back of my head. I'll try to keep the oil off of the abscess. Not to mention that I'll try not to scratch!

The kid's will be here over this weekend and I'm hoping that they'll help me get the tree up. I can't believe that Christmas is only a few weeks away!

Time flies when you're having fun. lol

Enjoy your Friday!

Day 296

2008-12-04T06:49:00.002-05:00

Thursday already! What a strange week this has been.

At least the abscess on the back of my head is slowly starting to go down a little. Maybe the hot compress helped some last night.

I can't believe that the first week of December is already almost gone. I have yet to get started Christmas shopping!

I'm thankful for Christmas....it'll make the time go by faster.

Have a Nice day everyone.

Day 295

2008-12-03T06:22:00.002-05:00

With 40 days to go I'm restarting the Peg. on Friday as per Hershey.

While my Absolute Lymphocytes are below 500, my T Cells are holding their own just above 200...so onward we push.

I'm not looking forward to restarting the Peg but I will make it to the end of this thing.

It's funny because with so many people being pulled I was beginning to except that I may be pulled also. Somewhere in my brain I began feeling a little relieved that maybe it was all over....I was excepting that since I cleared the virus by week 2 of tx that maybe 40 weeks of tx was enough. I was talking myself into it.

The news yesterday became a double edged sword. On one side of it I'll be able to put the last 6 nails into my Dragons coffin.....on the other side of it I'll be back on the Peg.

This morning I've had enough time for it to sink in. My mind is turning back to getting into the battle. By the time I take the shot on Friday night I'll be ready for the fight.

40 days...6 injections of Peg, 23 more injections of Nuepogen and Procrit (plus whatever it takes after tx ends to return my Platelets and Nuetrophils back to normal levels) and 160 more Ribavirins to go....

I've come this far...I'll make it to the end.

"Hang in there T Cells, we're almost done."

Day 294

2008-12-02T06:24:00.003-05:00

I spoke to my study nurse yesterday and she has my CD4 count back but hasn't spoken to my doctor yet. She has to get the orders from her before she can pass them on to me.

The good news is that she was able to tell me is that my CD4 cells have come back just barley over 200. They're still holding their own.

We're waiting to hear from the Doctor that I'll be restarting the Peg. probably on Friday.

In the mean time I have an appointment with my family physician this morning to look at the abscess on the back of my head. Damn thing.

I don't know if the abscesses will have a bearing on what my Doctor decides.....I guess I find out today.

Waking up this morning is a little ruff again. I can tell that I've restarted the Ribavirin. My energy level has fallen back down to a slower pace. It feels pretty much like yesterday morning...waking up was slow but after a while I started feeling better. I'm sure that today will be more of the same.

So thats it for now. That's all that I know.

I wonder what little dramas today will bring.........

7:15 am
lol, not 10 minutes after publishing this post I got a call from my family doctors office. He's off sick today and can't see patients! What Luck I have!
There is a Doctor that's covering him but I don't like her at all.....he said that I could go to the ER here to have it checked out, but I don't ever plan to step foot back in that place again.
I'll talk to Sandy today and see what she says.
It's never ending isn't it!

Day 293

2008-12-01T06:17:00.002-05:00

I can definitely tell that I re-started the Ribavirin, my energy level went from very high to a bottomed out.

On Saturday I finished cleaning the art studio and by early evening the fatigue kicked backed in. Yesterday was spent on the couch and this morning isn't much better.

I also have to call the doctor this morning. Last week I had what I thought was just an ingrown hair or something that abscessed and then drained (gross I know...sorry). Now I have another one on the back of my head. It looks like a huge lump and it's painful as hell. This one doesn't seem to want to go away.

I know it's from my low blood counts.....I'm getting infections.

I should hear from Hershey today about my Lymphocytes. Because I'm having infections back to back now I'm thinking that they've gone too low and that they'll probably pull me off tx.

At this point, after 2 back to back ear infections and now 2 abscesses....maybe it is time to stop. My body is painfully beginning to beg for an end to it.

I guess I'll know later today.

Have a Nice Monday everyone!

Day 290

2008-11-28T07:34:00.003-05:00

Wow I got energy yesterday. Too much energy actually.

I woke up yesterday morning a 2:30 a.m. and that was it...I couldn't sleep. Not even a sleeping pill would helped. I wound up getting out of bed and began cleaning our art studio. At 7 I started our Thanksgiving dinner and cooked all day. By 7:30 I still couldn't relax so I went back to cleaning the studio for about an hour. Finally, after all of that, I made myself tired and went to bed.

I slept all night and didn't have to take a sleeping pill.

Whats up with that? Is my body reacting to not having Ribavirin or Interferon poured into it?

I don't know but I like the energy....at the same token I would kind of like it dialed down a notch.

LOL...Just can't be happy can I?

Anyway I slept all night and now here I am feel pretty dog gone ducky.

I started the Ribavirin back up last night but I don't think my body has figured that out yet. I'm hoping that I get a few days before it starts hitting.

I'm still on hold for the Interferon until around Monday when I find out whether I end tx completely or I continue on.

For now I think I'll just enjoy the day with my good ole friend Ducky!

Day 289

2008-11-27T04:44:00.007-05:00

So I got a call from Hershey last night on my way home from work.

It wasn't what I expected....I'm still holding off on my interferon. My Lymphocytes have dropped below 500 and they're running the CD4/CD to see if my T cells are below 200. That takes about a week to run the test so I won't have the results until at least Monday.

Because my friend Dorene has just gotten the news that they've pulled her from tx due to low Lymphocytes I figured I'd try to give it a stab to see if I can try to explain what this is all about....although I may not have a total picture and I can only explain it in layman terms(I am NOT a Doctor).....

Lymphocytes are made up of 2 different types - T-cells and B-cells.

Both cells work to recognize foreign invaders like bacteria or a virus. Once the infection is recognized, B cells work to neutralize the infection and T cells produce toxic granules to induce the death of the bacterial or viral cells.

I'm sure there's a whole lot more to it than my sorry little paragraph explains....but that's the gist of it.....as I know it.

When our blood has been tested over these past few months since tx began, they've been watching our Lymphocytes because the trial drug caused many of us to have low counts.(Some of us where pulled from the trial at 12 weeks and some of those are still waiting for their counts to go back to normal.) The test that they usually run is an absolute count. If the absolute count falls below 500 they run a CD4/CD count. This test specifically measures the percentage of CD4 T cells in the blood. If the CD4 T cell is below 200 life becomes a little more dangerous. The bodies ability to recognized and kill off invading bacteria and virus' becomes compromised (much like an AIDS patient).

When the count is less than 200, interferon has got to be stopped because interferon itself can suppress the bone marrow from producing Lymphocytes.

......That's how I understand it. I may be wrong, so let me know if I am.

Anyway, this is not the first time that my Lymphocytes have come back below 500. But when they did the further testing I was above 200 so tx continued.

I realize that this time may be different since I have had 2 ear infections back to back in a very short period of time.

If they decide to pull me from tx....so be it.

I'm hoping that I've already slayed my bastard of a Dragon since I was undetectable at week 2. I didn't want to gamble by stopping tx 7 weeks early....but I think the gamble of playing with totally screwing up my immune system versus the now low risk of not clearing the virus......it's just not worth it.

Hopefully Monday will come and they'll tell me that my count is still above 200.

No matter how I look at it I am blessed. I'm happy and surrounded by a beautiful loving family and an incredibly wonderful Husband.

I am thankful.

Happy Thanksgiving Day Everyone!

Day 288

2008-11-26T05:55:00.005-05:00

Thanksgiving eve and it's already been a week since I've taken Ribavirin and week and a half since I took the Interferon. It's definitely given me a nice little break from feeling like I've got the flu.

At the same time I can tell that it's going to take a while for these drugs to filter out of my system. The fatigue still hangs out in the background telling me that this is not over with yet....don't push it too hard.

That's ok, because it's not flooring me. Outside of the bone aches from the Nuepogen last night I feel pretty good! After I grab the Ibuprofen to help get rid of that I should feel even better.

With the Holiday I'm thinking that I won't hear from Hershey to restart until Friday.

Tonight I'll bake the pies, pumpkin roll and make the stuffing. My daughter is coming over to spend the night to help me cook tonight and tomorrow.

This will be the first time in my life that the holidays will not make me long for my own family (Mom, Dad, Brothers and Sisters)....this virus and treatment has finally, after all of these years, made me realize that they are and always have been gone. I think that I can be ok with that.

It's Thanksgiving and I have sooooo much to be thankful for.....Life is beautiful.

Have a Beautiful Thanksgiving Everyone!

Back From Hershey

2008-11-24T16:04:00.002-05:00

Well I'm home with drugs in tow.

I'm still on hold taking them pending my blood work, but they sent me home with them thinking that I'll be restarting the Interferon by Friday.

They were prepared to stop if the infection wasn't any better or if I lost any more weight. If my blood work comes back not so good they still may stop....but for now it looks more like I'll continue through the end.

We've come this far and neither Hershey nor Jimmy and I think it's worth the risk to stop now.

If I wind up with another infection it'll be a different story....we'll end treatment because my body just won't with stand anymore.

There was a very big surprise in today's visit - Roche has unblinded the Trial. They've decided to start all over. The trial drug has shown to have too many problems....eye problems and low blood counts like Lymphocytes that don't seem to want to return even after tx has been stopped.

Unblinded means that today I found out that I was on one of the highest dosages in the trial - Group A:
RO4588161 - 1000 mg. twice daily
Pegasys (Interferon) - 180 micrograms once weekly
Copegus (Ribavirin) - 1000 mg. Daily

Jimmy and I had joked around when we first started this saying that with my luck we'll get the highest dosage. Well we did....

Right now our worry is to make it through these final 7 weeks, then the worry will be praying that my blood counts return once I'm off of the Ribavirin and Interferon. I'll be on the Procrit and Nuepogen for a while after tx ends trying to get my counts back up where they should be. With standard care they would normally come back on their own.....with the trial drug that we took there's a worry about how fast they'll come back...if they come back.

My final worry will be if I cleared the virus. I'm sure that I may have already, but it's a risk that I choose not to gamble with by stopping tx 7 weeks early.

So that's it. I wait for the call from Hershey saying that I'm restarting....

For now I think that God gave me a brief stay from tx so that I can enjoy Thanksgiving a little bit more.

:)

Day 286

2008-11-24T07:13:00.002-05:00

The weekend wasn't bad. All 3 of my kids where here on Friday night. On Saturday, after some pushing and prodding they help me clean the house up a bit for the upcoming Holiday.

On Sunday my youngest went down stairs to work his Sunday maintenance job for the Roads and I took my daughter to the grocery store to get the fixin's for Thanksgivings Dinner and they carried it all in.

By Sunday afternoon I was still feeling pretty good but the weekend was catching up to me and my ear was starting to get to me a little....but my daughter invited her boyfriend over to meet me.

It's kind of hard with the kids. I try to keep going for them and I try to act as best as I can.....but after all these months of tx they tend to forget that I am sick. It's like that old fable "Mom's aren't supposed to get sick".

Jimmy gets upset and I do too sometimes, but they're not here all the time and they don't see.

What they do see is that I continue to work.....but they don't how much of a struggle it is for me to keep working.

What they do see is my cleaning out the cabinet and fridge to make room for the Thanksgiving groceries.....but they didn't see the fight for energy that it took all morning long while they slept in the morning.

Ask my oldest Son about it and he says he can only see my strengths......he doesn't see the battle. I know I try not to show it to them.

It's not like I try to hide it or I try to shelter them from it.....it's just that I only get a couple of times a month where they'll all come together and spend the weekend with me. They're all grown up now and sooner or later they'll marry or move away and my weekends with them hanging out with me will be over. Sure they'll still visit, but it won't be as often...they'll have families of their own.

Anyway, This morning I'm waking up feeling pretty good. I guess I should because I haven't taken Ribavirin since Thursday and I had to skip my Interferon on Friday. Fatigue still comes but not as hard. The ear infection is still there a little....but it got somewhat better. It's not nearly as sore, but it's not gone either. I was hoping it would be gone by this morning before I had to go to Hershey.

I'm always worried that they'll take me off tx. It's always a worry especially since so many people have been pulled from the trial for various reasons.

I have 49 days to go.....I'd rather fight them out then to be left wondering if tx ended too soon.

49 days....I've come this far....They can't pull me off for ear 2 ear infections....I hope.

I guess I'll find out in a few hours....

Have a Nice Monday everyone!

Day 283

2008-11-21T06:17:00.002-05:00

I started my morning off yesterday going to my family doctor. I hate going to any Doctor, but I really like my family doctor. He's so supportive.

Turns out that both of my ears are infected. It's mostly my ear canals and I may have caught it before it went too far this time.

Doc says it's drug induced. He went through chemotherapy last year and told me that he had the same problem with dry and cracking skin that I'm having. He showed me his hands and how they still are dry and pealing at the creases. He said that almost a year later his skin is still recovering.

I asked him if there's anything that I can do and he said the same thing that Hershey says....use oils. There much else that you can do.

He prescribed Cortison Otic Sol. drops for my ears to use 4 times a day and told me that I could use a drop or 2 to rub on the outside of my ears to help heal up the dry cracking skin there also.

It was good news that maybe we caught this in time to not wind up with the horrible pain that I had the last time.

I go back to Hershey on Monday. Hopefully, with any luck, my ears will be cleared up by then.

One thing I do know is that now that it's the weekend, if this gets worst before Monday I'll be driving to Hershey's ER and not going to Hazleton General!

After the Doctors appt. I stopped at General Hospital to take the form to the records department so that they'd finally fax my ER record to Hershey.

I handed the form to the "lady" along with my drivers license and told her that the record had to be faxed by the end of the day because I have an appt. on Monday and they need it badly.

The "lady" said "Oh I don't think it will make it by Monday. The record has to be pulled and that usually takes a couple of days."

Yep I got mad.

I told her that in that case I wanted a copy of the record right now to take with me and that I wasn't going to leave without it. She said that if it took a couple of days to get the record to Hershey how did I think I could get it today, right now?

I told her that I wanted to talk to her Supervisor and she said that she was the only one there right now. So I told her that I don't care if I had to talk to the Hospital Administrator I'm not leaving without my record....so call the Administrator!

She said hold on a minute and she left the room. She didn't say why she was leaving the room....I guess I assumed that she was getting someone to back her up or something...lol

Less than 5 minutes later back she came with my record in her hand! I was so stunned that she was handing it to me that all I could do was stand there and stare at her! Words escaped me. "A couple of days to pull the record" my ass!

Incredible!

I went to work and faxed the record and a report from my doctors visit that morning alond with the scripts that he wrote to Hershey. I asked my trial nurse to ok the scripts before I got them filled..... Even though I trust my family Doctor, I'm not taking anything anymore unless it's ok'd by Hershey!

So that's it. Riba-rage won and I didn't go to jail! lol

I've got antibiotics for my ears before the weekend hits and maybe we've caught it in time this time.

My ribavirin and Interferon are on hold for the weekend, so no shot tonight. On Monday tx will probably start all over again.....but at least maybe I'll get the chance to heal over the weekend.

7 weeks to go. One thing that I know is that this is going to be hard right up until the end.

Have a Wonderful Friday everyone!

Day 282

2008-11-20T06:21:00.002-05:00

What a crazy mess this is turning into.

Last month I had the ear infection in my left ear. It was painful as hell and I called Hershey on a Friday to ask what I should do. My doctor was out for the weekend and I was told by the attending doctor to go to my local ER have it checked....she didn't want me waiting the weekend out with the infection without having it looked at and treated.

So off we went to our ER. I hate the Hospital here (bunch of quacks) , but hey it was just an ear ache.

At the ER we told them about the Hep C and all the drugs I'm on. We also told them over and over again to get a copy of their report to Hershey.

They checked me out, did a CAT scan, gave me an IV antibiotic and sent me home with scripts for ear drops and an antibiotic called Augmentin 875 mg.

3 weeks later I have an ear infection in my right ear now. I called my research nurse at Hershey and she said that the Hospital here never sent a report. They asked what it is that the hospital put me on and I told her.

After she spoke to the Doctor she called back.

I should Never have been prescribed Augmentin! According to her, and now that I've looked it up on the net, Augmentin is the very worst antibiotic to give someone with Hepititus!

They don't want me going back to the hospital here. I have an appointment this morning with my family doctor. He needs to look into my ear to verify that it's an infection and I'm to tell him that if it is he needs to prescribe Keflex for it.

They also want me to stop the interferon and Ribavirin and I have to go to Hershey on Monday. They want to run blood work to check me out partly because of the infections and partly because of the Augmentin.

In the mean time I called the Hospital telling them that have got to fax the report from the ER visit to Hershey immediatly! The lady (using the phrase lady lightly) in the records department said she didn't get a HIPA release form from the ER to send it.

I told her I signed one and I asked them to make sure they sent it. She said "Well I didn't get it from the ER and I'll have to send one to you in the mail and you can mail it back".

I said no! I don't have time for that, Hershey needs it right now! Fax the form to me and I'll fax it back.

She say's I'll fax it to you but you can't fax it back.

Now I'm pissed!

Fax it and I'll bring it back to the hospital myself. So she say's "if you do that I'll have to have a photo id or drivers license from you!"

OMG! Fine! I have a License! I'll be there tomorrow!

This Hospital screws up and now I have to fight to get my records!

I'll go to my Doctor this morning and on the way back I'll stop at the hospital to drop off the form. If my records are not faxed to hershey by the end of the day I'll go back to the hospital tomorrow and I'll demand to see the Head Administrator or I'll cause a ruckuss big enough to make the news paper!

I don't think this Hospital has ever seen full fledged Riba-Rage before.

So that's my day....

My ear hurts, I'm sick to my stomach and the Hazleton General Hospital is full of a bunch of quacks!!!!!!!!!

Hope your day is better than mine!

Day 281

2008-11-19T07:17:00.002-05:00

Woke up this morning and now my right ear is sore and I can hear the fluid in them both.

What the hell is it with ear infections?

At least I still have some of the antibiotic drops and pills from my left ear being infected. I started them this morning and I'll call Hershey later today.

I wish there was something that I could do to prevent this from hapening.

Last night I hit the wall at 7:00. I haven't done that in days. This morning waking up is ruff. I'm sure that if my ears are infected again...it's got a lot to do with it.

I was kind of hoping that these last 8 weeks would be uneventful. So much for that!

Day 280

2008-11-18T07:29:00.002-05:00

Monday was ok. Parts of it went fast, parts of it dragged.

After work I had the treat of going to see my GYN. What fun. The witch of a receptionist didn't say a word about our argument on the phone. I didn't think she would. Got my exam and script and off I went.

Of course it can't be that simple. During the exam Doc found and lump in my armpit. I told her that I have lumps everywhere right now....my glands have been swollen for months. And then of course the nasty word Mammogram popped up and out came the script pad for the test.

Umph.....I know it's just more swollen glands. The one that she found comes and goes. I don't think a cyst or tumor does that.....well maybe a cyst does, but not a tumor.

It's the drugs. I know it.

Other than that I've been eating ibuprofen because I still can't shake the body aches from Fridays shot. They're not too bad. Nothing that the Ibuprofen doesn't handle.

There's also the inside of my ears driving me nuts again. I'm trying not to scratch them for fear of another infection....but man oh man it get hard not to.

It's Tuesday....Nuepogen day. Hopefully the body aches go away by tonight before the bone aches kick in from the Nuepogen. That would suck if they don't.

Nope I'm not in a doom and gloom mood even though this post sounds like it. I'm actually in a "manage my sides" mood. Right now there's no real emotion to it. Just a lot of thought on how to deal with my body and what's going on today.

Overall I don't think I feel too bad. I'll pop some Ibuprofen, ignore my ears and I'll force the day to get better.

Have a Terrific Tuesday!

Day 279

2008-11-17T07:25:00.002-05:00

Yesterday felt like the flu all day. The weather outside pretty much matched it....cold with rain and snow flurries.

This morning the sun is coming out but still the flurries continue off and on. Again the weather is matching the way my body feels....A lot better than yesterday but still a little crappy.

Maybe the day will get better as it goes along.

I hope that this week flies by. Next week will only be a 3 day week so a lot of the work that I would do next week will have to be done this week....that's ok by me because I know the days will move faster. Week 8 should go by in a blink. I hope.

Have a Beautiful Day Everyone!

Day 278

2008-11-16T07:17:00.002-05:00

Another shot down and another weekend gone.

Yesterday I spent the day back and forth to the couch. But on the bright side I did get some laundry washed, dishes done and I made a pot of homemade ham and bean soup.

Oh yeah, and I made it to the grocery store again. That's always a big deal for me. Fatigue makes it very slow going but I always feel like I accomplished something when I can get there.

Jimmy usually lectures me about the store saying "make a list and I'll go". He calls me stubborn. I guess there's just a part of me that still wants to be productive in my home.

I guess maybe in ways I am stubborn.

This morning is kind of ruff but still do-able. I'm hoping that I snap out of it as the morning goes on. It really does feel like I have the flu....but I know it's just the Peg. shot.

8 more weeks to go.

Have a Nice Sunday!

Day 276

2008-11-14T07:15:00.002-05:00

Thursday was great. It was busy but I felt good!

One thing that I've noticed is that even when the brain fog isn't so thick in my head, my brain still has a hard time keeping up. I don't know if you would call it forgetfulness... it's more like my brain skips a beat during thoughts. It pauses and gets stuck at times, as I struggle to regain my thoughts and sort out the scrambled mess....I find that I have to recheck everything that I've done. Is that forgetfulness? Who knows...

What I do know is that after being on all of these for all of this time, I'm hoping that everything goes back to normal when this is all over and the drugs are out of my system.

I believe that it will. Terry, Teah and Iris are all a testament to that.

Anyway yesterday was great to me and even though today is Peg. Friday, I know this day will be good also! At least up until tonight.

Ducky is back!

Day 275

2008-11-13T07:07:00.004-05:00

60 days to go.......I wonder.....at how many days to go will I stop having that "yeah but" feeling.

You know what feeling that I mean? The words "60 days to go" comes out of my mouth but my mind still says "yeah but you still have 60 days to go". Will that change at 30? I can't imagine it being the same at 15.

I guess I'll find out......

Yesterday was a pretty good day up until I got home and found out that someone that I used to consider an old friend was arrested for child rape and molestation!

I'm floored! I still can not fully comprehend that he did this and has been doing for 7 years to his own step daughter.

I also can't believe that this is the same friend that I held a benefit for to raise money for when his families home was wiped out in a flood a few years ago.

You never know where the monsters hide.

I truly, full heartedly believe that if a man rapes a child, he should be castrated. I don't mean castrated by taking drugs....I mean castrated in the same way that a dog is castrated. He is nothing more than an animal and should be treated as such.

The sick bastard!

It is my hope that he spends the rest of his life paying for what he's done to this little girl.....because she has no choice but to live with the memory of it for the rest of her life.

I pray that the Judge who sentences him is a Real Man and not corrupted like other Judges have been in the past. I pray that this Judge will see a child rapist and that he will sentence as such!

Crimes against children deserve the severest penalties.

So yesterday started out well but ended in horror.

I am shocked.....

Day 274

2008-11-12T06:55:00.002-05:00

Well the brain fog only lasted part of the day yesterday. By late morning it started letting up. The rest of the day moved on pretty fast, the afternoon was busy.

I came home from work to find Jimmy cooking dinner. :) Have I mentioned that my Husband is beautiful?

I stayed up until 9 and then off to bed I went like a little old lady.

This morning is the same ole brain fogged waking up but not as bad as yesterday so I'm sure it will pass very soon.

I have a friend who is on standard tx. She's right around 30 weeks. She started crashing about a week ago.....nausea and fatigue.

When she started tx she went on a general forum site and found a group for Hep C. Someone there told her to stay away from fatty foods while she's on tx!

The one thing that I've learned from "experienced" tx'ers is that while taking Ribavirin you have got to take it with fatty foods. The drug breaks down faster with fat content and moves out of your stomach faster without as much nausea.

Also from what I understand, the high fat causes better absorption of the Ribavirin into your system.

The poor girl has spent her time taking the Ribavirin with stuff like orange juice. She's had nausea all the way through her tx.

If your new to tx, Please be careful about the advise that you find from others on the net. People always mean well (I hope) but sometimes they themselves are misinformed at times. Listen to what they have to say, but then move on and research their advise before acting on it. Even anything that you see here on my blog should be researched before trying....I am just a person going through tx and learning along the way.

Anyway, my heart goes out to her, she's having a ruff time of it right now. Hopefully it passes soon.

As for me, today is going to be good! My Duck is knocking.....

Have a Ducky Day Everyone....

Day 273

2008-11-11T07:14:00.002-05:00

Yesterday was a washout. I woke up with a headache that just held onto me for most of the day. Damned little drummer boy was beating on my brain so hard it made me sick to my stomach.

I woke up this morning with that washed out brain fog feeling. But hey, at least the headache is gone.

I'll splash some ice cold water on my face and see if I can't snap out of it for work. Today's going to be a busy day.

Hopefully it rolls by fast!

Have a Great Tuesday everyone!

Day 271

2008-11-09T07:41:00.005-05:00

Yesterday wasn't too bad to me.

I had a couple of friends stop by to hang out for a while during the afternoon. Now a days thats pretty rare. I don't really go anywhere so I don't really see anyone outside of work. I suppose it's easy to be forgotten when it seem like you've dropped of the face of the earth.

It was nice to sit and chat with with them for a while. It felt like a little taste of normal. I'm so glad that they stopped by.....

I hung out on the couch for most of the day trying to save up the energy to make it to a good friends wedding reception last night. Saturdays are the hardest and I knew that if I was going to make it at all I'd have to save up what I could.

It worked because we made it there. She looked beautiful and I'm so happy that we got to see her and a few other friends that I've missed over the past year.

2 hours into it and about an hour after my bed time I was ready to go home. That's ok because I was just sitting around anyway.High heels and tx do not make good partners! lol

On the way home my vision once again decided to go bye bye. I don't know why this is happening so much right now. It was dorment for a few weeks there and now it's seems to be back with vengence.

A few minutes after Jimmy got me home it past. Ibuprofen kill the headache that it left behind and I was off to bed about an hour later.

Small price to pay to be able to see Gale on her wedding day.

Other than that, this weekend isn't too terrible.

Maybe Ducky will hangout with me for a while this week.......

Day 269

2008-11-07T07:26:00.002-05:00

Well it's Friday again.

After tonight's shot I will officially be in the single digit weeks....9 weeks to go.

For the last couple of days I've been trying very hard to look past the tx. Trying to focus more on what I want to do when this is all over. I know I'll still have 9 weeks to go, but my mind needs something positive to hold onto.

Last Christmas I got a set of golf clubs from Jimmy and a year later I have yet to use them. So this spring I'm thinking of taking a golfing lesson to better my chances while playing Jimmy. lol....translated that means to better my chances at hitting the damn ball!

Also, we'll start planning our finishing tx celebration vacation. I want to go somewhere that has a lot of energy. A place with rides and lots of stuff to amuse my brain. We juggle the ideas of Las Vegas and Walt Disney World. In the end, since Jimmy's been to Las Vegas many many times and I been twice, we've decided on Walt Disney World.

I want to let loose and have some little girl fun....I want to forget that any of these 48 weeks even happened.

There is life after this horrible mess and while I can not see that yet....I can plan for it to come.

The Zoloft is making me clench my teeth again. I don't like this drug but I'll give it a few more days to see if it mellows out and starts to help. If it doesn't, I'll stop it again and I'll just have to deal with it.

It's just a matter of pretending to be ok and sooner or later I will be.

It's Friday....shot 38 day.

This weekend will be nice to me.....because I say so!

Enjoy!

Day 268

2008-11-06T07:09:00.002-05:00

Yesterday was a semi busy day at work. That always help to pass the day.

I lost my vision again in the morning. But at least it didn't take as long as the day before to get it back....maybe 15 minutes and then I was fine again. It just left me with that slight tension headache that Ibuprofen seems to handle just fine.

That little drummer boy ain't going to get me!

There's just too many drugs rolling around in my body and my brain.

Just another day on tx......

Another nail in my dragons coffin.

Day 267

2008-11-05T07:12:00.002-05:00

Congratulations Obama!

Now it's time to see how real his campaign promises are........

I went to vote early yesterday morning expecting a long line but found only 2 people ahead of me, so voting took only a few minutes.

Because I was so early I decided to take a nice slow drive to work. Almost most of the way there I began to realize that I was loosing my vision again. When it starts I get a few minutes before I loose it to the point of not being able to see and I knew I was close enough to make it to work and I did. I sat in the parking lot waiting for my vision to return. Once I thought it was passing and I had most of my vision back I went in. Maybe I should have stayed sitting in the car because it took almost another 15 minutes for the rest of peripheral vision to come back.

Once it was over I was fine again. I had a slight headache at the base of my scull....but nothing that Ibuprofen didn't handle.

Outside of a whole lot of brain fog and some fatigue, the rest of the day was uneventful.

This morning waking up my brain seems very foggy. I guess I could figure some of that brain fog is coming from the Zoloft that I restarted last night. I'm hoping that I can stand taking it this time. It's seems like the tx is really starting to play games on my thoughts. My self esteem has never been so low.....I try remind myself that my body has never been under this type of attack before and it's just the drugs playing games. 38 weeks are taking it's toll.

With all of the holidays coming up maybe I'll find a new distraction, and maybe the time will go faster.

Have a Nice Day everyone.

Day 266

2008-11-04T06:44:00.003-05:00

I got up yesterday morning and fought to clear my mind through all of the brain fog trying to get ready for the hearing. I have to admit that I was really concerned about being able to think straight.

I went down to the local UC office for the scheduled time and sat there waiting. The Claimant wasn't there yet and I found myself chuckling at the thought of him showing up late for the hearing.

Finally we where called and he didn't show!

It turned out to be the easiest hearing that I've ever had to deal with in the 20 years of my having to go to appeal hearings! lol

Well finally today is Election Day!!!! After today we'll not only have a new President of the United States and hopefully a new Congressman named Lou Barletta....but we'll also have some peace again! No more phones ringing off the hooks. No more campaign signs and listening to the candidates slamming each other.

Just peace and quiet as we sit and watch how many campaign promises become truths and how many are forgotten.....

I'm going to go try to vote this morning before work, but if it's real busy I'll wait until after work when I have more time to stand around there.

By the time our new President and Congressman is elected I'll be snoring up a storm. I'll have to ask Jimmy to wake me with the results. Knowing him, he'll be up all night watching it unfold. My poor sweetheart never sleeps and with something like this going on I know he definitely won't sleep tonight.

This morning I'm finally coming out of the funk....I think.

My brain is a lot clearer than it has been and I don't feel too bad this morning.

There is one difference in this Tuesday morning...I forgot to do my Nuepogen shot again last night. That's ok though, I was thinking about changing it to Tuesday nights anyway. Maybe if I have Sat., Sun. and Mon. to recuperate from the Peg. shot, the Nuepogen bone aches won't be so hard to ignore.

Besides, having 4 days in a row with shots seems to be more worth it when I'll have 3 days in row without any.

For now I feel pretty good! I can almost see Ducky again!

Day 265

2008-11-03T06:53:00.002-05:00

Well thankfully the brain fog lifted just enough yesterday for me to prepair for the hearing this morning...I think....maybe...

With any luck I'll be able to think clear enough at the hearing.

All in all the weekend wasn't too tuff. I spent some most of the afternoons on the couch but it wasn't as bad as some weekends.

I can't wait till this is all over and I can have my life back again. What do I have? 70 days to go. Next week it'll be 9 weeks...single digits! yeehaw.

Day 264

2008-11-02T07:33:00.003-05:00

I woke up yesterday morning and took my daughter to the eye doctor for her routine exam. Afterward I made her help me at the grocery store and carry the groceries into the house.

I got the groceries put away and even got some light housecleaning done. By afternoon fatigue kicked in and I went couch bound.

All in all this weekend has been nice to me. I have that drug hangover going on this morning but at least I'm able to function.

With any luck my brain fog will go away by this afternoon because I have to sit down and prepair for a UC appeal hearing for tomorrow morning. I tried all week last week to lay out my questioning but the brain fog was too thick and I just couldn't think through it. By this evening I'll have no choice...the hearing is at 9:30 tomorrow morning. Hopefully my brain fog doesn't cost us the ruling.

At least this weekend is so much better than last weekend. My ear infection is cleared up and by tomorrow I should be able to drop the antibiotics. Dropping drugs at this point is always a big plus!

The Hot 6 Oil continues to be the best thing that I've found for my dry and chapping skin. It's cleared most of it up around my ears and my scalp is feeling so much better because of it. It is something that I've learned I'll have to use everyday to maintain control over it. If I skip a day the dryness starts to come back immediately.

Well it's 2 days until election day and our phone doesn't stop ringing. Most of the calls have come from the McCain campaign, probably because Jimmy and I are Republicans. I would have to give the McCain campaign an "F' for effort considering that when one of the phone calls was an actual human she asked me who I was going to vote for....when I said I was voting for Obama she said "oh....ok" and hung up! She didn't ask me why, she didn't try to talk McCain up, she didn't try at all to change my vote....lol....she just said "Oh, ok" and hung up!

LOL, I can't help but wonder why they are bothering to call?

I figure it this way, the next time a I get a McCain phone call, that is an actual Human, I plan to only say "Oh...ok" and I'll hang up.

7 Phone calls in one afternoon (5 from McCains Campaign, 1 from Obamas, and 1 for a poll) is way too many calls in one Saturday during tx much less a day when you feel healthy!

Today is Sunday. Historically this has been a day of peace, rest and worship. When I said to Jimmy that at least tomorrow is Sunday he said "Sunday! Oh they'll still call". I believe he's probably right. What's worse is that they aren't calling to try to sway my vote and convince me...they seem to be calling just to be a pain in my ass! Maybe today I'll bust them back....that is if I get a Human instead of a recorded message.

Election day is 2 days away. By the time this is over we'll all need Prozac!

Have a Nice Sunday Everyone!

Day 262

2008-10-31T06:02:00.003-05:00

Well after 2-1/2 hours at the eye doctor they can tell that I'm on lot's of drugs but they don't see anything big time wrong with my eye's.

The drugs have changed the diameter of my contacts. Doc say's that normal for being on so many drugs. There's also 2 tiny spots in one eye and 1 tiny spot in the other. He said that this also is from the drugs and will probably go away once I'm off. Neither of these things is causing my periods of blindness. His diagnoses is that I'm having a Basilar migrane from the drugs. It's a type of ophthalmic migraine who aura fills both visual fields and may be accompanied by dysarthia and disturbances of equilibrium.Which he say's will also go away once I'm off of them. He also said that it could be a type of slight seizure which wouldn't be very abnormal with taking so many different chemicals. But he's leaning more toward the Basilar Migrane.

That Diagnosis is being sent to Hershey. I wonder what they'll do with it.....

I only have 73 days to go. They may not do anything since I only have it every so often. My fingers are crossed.

Good news is that there's nothing wrong with my eye's that finishing tx won't help. Even if the spots remain after I finish the drugs, the Doctor doesn't think they'll ever cause me any problem.

It's Friday. Waking up is a little tuff but I think my head is clearing. Brain fog has been kind of tuff this week....probably because of all of the extra drugs that where added for the infection. LOL it's pretty bad when you have to use the front and back of a paper to list all your medications for a Doctors appt. It took the nurse 15 minutes just to type them all into the computer.

Past all of that I think I'm ok this morning. That's a real good thing because I'm hoping for a nice weekend.

Hope your weekend is nice too!

Day 261

2008-10-30T05:57:00.002-05:00

Well I bit the bullet and cut my hair off. I left about an inch so that it doesn't stick straight up. Sure, now I look like a boy! lol But I don't care as long as I can get my scalp to heal better. And besides, when it does start to grow back after tx it'll have a better start at being more even.

It better grow back!

For now it doesn't matter anyway....I'm covering it with a scarf.

The Hot 6 oil is working great right now on my neck and outside of my ears. I'm pretty sure that I can get my scalp to heal now that there's not as much hair in the way.

I guess I'll know in a few days....

Have a Great Day!

Day 260

2008-10-29T05:53:00.002-05:00

Talk about weird weather....we got around whole bunch of snow yesterday and about 2 miles outside of Hazleton they got next to nothing.

Biggest problem is that with the trees still having leaves the heavy snow and crazy wind sent power outages all over the place. What a mess!

On the brighter side, my ear is finally starting to let up. I have never had an ear infection this bad before. I'm so glad that it's finally going away. It's gone from horrible pain to throbbing all the time, to now throbbing when I bend over or lean forward etc.....and Ibuprofen seems to be helping that.

I'm hoping that it's gone by the weekend.

Have a Great Day Everyone!

Day 259

2008-10-28T05:41:00.002-05:00

It was another night of wake up, take something for pain, wait a half hour and go back to sleep. I can't imagine what this would have been like if I hadn't had the I.V. antibiotics. (Thank God for my darling Jimmy who has to deal with such a stubborn wife.)

Still, I guess it'll take a few days to clear it up.

Yesterday I bit the bullet and wore a scarf, it helped a lot with the ear pain by keeping my ear warm and the air out of it.

Tonight I'll bite another bullet and get my hair cut very short. I have to try to get my scalp and ears healed up so that I don't wind up with another infection from them. Besides what hair I do have looks like hell because I just don't have enough of it to cover the bald spots anymore.

Screw it....I'm going to cover it with a scarf anyway.

You know I've always said "Nothing good comes easy".....

This ain't easy....but in the long run I know it will be good!

Day 258

2008-10-27T05:13:00.002-05:00

This was a ruff weekend!

By Saturday afternoon my little drummer boy had traded his ice pick in for a hatchet and was wackin' away at the inside of my ear! Or at least that's what it felt like. It got down to that "I'll do anything if it'll stop hurting" point and Jimmy talked me into calling Hershey. The Doctor on call for Dr. Smith told me to go to the emergency room saying that with a low white cell count my body isn't fighting the infection even with Keflex.

So off we went. After CAT scan later to make sure the infection hadn't gone to my skull bone they hooked me up to an I.V. antibiotic and then sent me home with horse pill sized antibiotics, Ear drop antibiotics and Vicoden for the pain.

Saturday night there was no sleeping. Not even the Vicoden stopped the pain.

By around 6 am on Sunday morning it was down to a throb and I finally fell to sleep.

Last night wasn't as bad. I'd sleep a few hours, wake up, take something for the pain and go back to bed. At 6 I finally just said to myself that I may as well just get up.

Now I just feel like shit but at least the pain is still just a throb.

I'm going to try to go to work. If Ibuprofen doesn't keep it tolerable I'll just come home.

The one good thing that came from this weekend is that Jimmy went searching for this stuff called Hot 6 Oil made by a company called African Royal. It's a hair and body oil that Rosie said works for her on her dry skin and scalp. Finally after many months of buying and trying products, I think this one is actually doing some good. I guess I'll know better in a few days.

Thanks Rosie!

I wish I could use it inside my ears! lol

Here's to hoping Monday get a little nicer to me.....

Day 256

2008-10-25T06:04:00.004-05:00

I wound up taking my Nuepogen shot (that I forgot about on Thursday night), the peg. shot, Ribavirin, a sleeping pill, 2 ibuprofen and 500mg of Keflex (for the ear infection) and then I went to bed last night.

It seems that the little drummer boy has found an ice pick and is now having a grand ole time inside my ear.

On top of everything else?.....yep that's just what I needed.

I slept pretty good considering. I woke up about 3 times and swallowed another Ibuprofen each time. But in between, when the ibuprofen was kicked in, I slept.

Thank God because I probably would have puked after taking so many drugs.

I woke up this morning with my ear screaming out pain....so I just got up. 2 ibuprofen and an hour later the pain is starting to let up somewhat.

The little drummer boy is a bastard!

Now that the pain is letting up and I can take inventory of how the rest of me feels....I've felt worse Saturday mornings.

One things for sure, this will be a couch weekend.

Day 255

2008-10-24T05:57:00.002-05:00

80 Days to go.....

I've got an ear ache, I didn't sleep worth a shit last night, fatigue sucks, my skin itches and stings.....and between all of that and Ribavirin topping it off, I am back to wanting to sit on the floor and cry.

Not a good way to start Friday off.

damn it

Day 254

2008-10-23T05:51:00.003-05:00

Yesterday was a killer. It was a long brain fogged day that took forever to pass.

I came home from work last night and was in bed by 7:30, took a sleeping pill and slept. I woke up this morning feeling a whole lot better.

I finally broke down and ordered 2 scarves and a snood to cover my head. I think I've gotten to the point that I just don't have any choice anymore. My hair continues to fall out, now even the side of my head has more scalp showing than hair, and my scalp is so dry that it gets cracked and painful. With the cold weather coming on I'm afraid it'll dry out even more if I don't cover it. (not to mention my head is starting to get kind of cold)

My Study Nurse tried to call around to see if she could find something that might help, but the only thing that she was told was to have me try to use baby shampoo. Other than that there really isn't too much that I can do about it.

Now I'm down to trying to only wash my hair once a week. I've been using a first aid cream where ever I can in hopes that some of it will heal.

Even the insides of ears are dry, itchy and sore. God only knows what you do about that! lol

So thats it! I'm taking the plunge into scarfing it! My plan is to just put it on in the morning and not look at another mirror for the rest of the day.

Hopefully I wind up looking more hip than I do sick! If anyone stares maybe I'll just get a shirt printed up that says "Caution I Get Riba-Rage!". lol

Anyway, I'm determined to have a good day!

I Hope you do too!

Day 253

2008-10-22T05:44:00.002-05:00

Yesterday wound up being filled with a lot of fatigue and brain fog. That's never a good combination on busy days at work.

The night was not much better. It took 2 sleeping pills before I finally fell to sleep at around 11:00 roaming back and forth between my bed and the couch. I woke back up at around 1am still on the couch and went to bed. 4am....5am.....6am....it's times like these that I hate the lighted red numbers on my clock.

Hopefully I won't pay for insomnia too much today and hopefully I'll sleep better tonight.

It's 34 outside so maybe the cold air will snap me out of it.

Have a Wonderful Wednesday everyone!

Day252

2008-10-21T05:27:00.004-05:00

Went to Hershey Yesterday hoping that my blood counts would be good enough to drop at least one of my injections. But no such luck.

It's seems that my WBC fell a little and while my Platelets have reached an all time tx high for me of 90, neither is good enough to stop or cut back Nuepogen or Procrit. Oh well...

Last week my little eye problem came back and Hershey just doesn't agree with my trying to ignore it even though there where only 2 20 minutes episodes. They strongly suggest that I see the eye doctor.

I would have forgotten to make the appointment when I got home, but shortly after getting home I wound up with another episode. Turned out to be my friendly little reminder.

It starts with a small spot in the middle of my vision that looks sort of like tv static. The spot grows and gets darker. After a while I can start to see through the middle but my peripheral vision is too dense and dark to see through. Then after 15 or 20 minutes it fades and I see fine. Sometimes I get a head ache in the back of my head, sometimes I don't. Other than a feeling of very slight pressure in my head.....there is no pain or even discomfort. I just can't see while it happens.

So off to the eye Doctor I'll go.

I felt good enough yesterday to make it to my sons football game last night. It was cold as hell but so much fun to watch. They won 24 to 6! :)

While waking up this morning is pretty ruff, I'm hoping that the day gets a little better.

Have a wonderful Tuesday everyone!

Day 250

2008-10-19T06:19:00.004-05:00

Well it seems like my Peg. shot went eany, meany, miney, moe....and I landed on miney.

Saturday was a not so bad day. At least I could get around a bit. By afternoon "moe" was kicking in a bit, but that's was ok because I got the morning to feel half assed alright.

I actually got up yesterday morning and made it to the grocery store. That to me is a hell of an accomplishment! To Jimmy....I'm just stubborn, he wanted me to make a list for him and he'd go. He's such a sweetheart, but I never know what I really want until I get there....

And besides, I made it to the grocery store the morning after a Peg. Shot! Woohoo!

Of course by late afternoon I was on the couch....but hey, I had a good morning!

Athena came over with the baby. He's turning 1 year old this week! He's almost ready to let go and start walking.

Jimmy and I got him a truck with lego blocks and I sat playing with him until his eye's started giving way to nap time. He cuddled up with me on the couch and fell to sleep in my arms while his Mom cleaned.

O.M.G. he's such a beautiful baby!

All in all, Yesterday was good for a weekend day.

This morning isn't too terrible either. Hopefully it stays this way.

You just really never know....

While the drugs fight the virus....Ducky is fighting the sides!

Day 247

2008-10-17T05:40:00.004-05:00

Yesterday morning was such a good morning that I woke up and started watching a recording of the debate between Obama and McCain. Before I knew it it was time to go to work! I didn't get to post...

Yesterday at work the day flew as I was trying to re-do formulas in a major spread sheet that I created 8 years ago. It was like looking at something in a different language. Even though I wrote all of those formulas, I haven't had to touch them for 8 years. Thank God my brain was pretty clear.

It's going to take me a few days to get all of the formulas rewritten. I'll just have to work at it on days that my mind isn't bogged down with brain fog. I have until November 1st to get it completed. Hopefully I have enough clear minded days between now and then. If not I'll just have to manually run some figures until the spread sheet is up and running right again.

All and all yesterday I felt very good. I was even able to stay up until 9pm last night before crashing.

It was a very nice break.

Today's Friday and I can tell because I have that achey old lady feeling that I get the next morning after the Nuepogen shot. Monday I go to Hershey and hopefully my counts are high enough that they'll let me cut the Nuepogen back to one shot a week....or none at all would be nice. They've been watching my white blood cell count for weeks now hoping the white cells could hold their own.

I'm afraid that I'm stuck with the Procrit though. My Red cells just don't really want to move. But that's ok, Procrit doesn't seem to give me any side effects outside of the injection it's self.

Friday also means Peg night tonight. Boy I hope it's nice to me this week! I know it'll make me feel like crap....I just hope it doesn't totally couch me. It's a flip of a coin lately.

There are those weekends where I feel like crap but still I can function slowly. Then there are the weekends like last weekend that has me on the couch and not able to do anything.

There's no rhyme or reason to it. It's just eany, meany, miney, moe! One weekend is not too terrible and then bam here comes a couch weekend!

I guess I have no other choice but to roll the dice, take the shot and just find out.....

Have a Ducky Day everyone!

Day 245

2008-10-15T05:49:00.002-05:00

It's Wednesday and finally I'm waking up without that hangover feeling. For the first time since last week, my mind feels clear. Brain fog has been terrible. It drags me down and makes the other side effects harder to deal with.

But today I finally feel decent waking up.

90 days to go. Still the concept of a finish line seems so far away.

What a twisted treatment this is. You know you're doing what you have to in order to kill a virus that's trying to kill you....but after such a long period of time you start to forget why you're doing it and the only thing that you know is how you feel today. Each injection starts getting harder to do and it takes everything within you not to throw the hand full of pills right out the window.

In my mind, these are what make me sick. I can see them and what the sides do to my body. The Hep C is nothing more than a number on a sheet paper now. I can not see the Hep C.

It's harder and harder to stay focused on why I'm doing all of this.....

My mind tries not to think about it. I pretend to be normal and still I paste a stupid smile on.

There are 90 days to go and I know that when this is all done and the drugs are all finished I'll be able to see, once again, why I've gone through all of this.

I guess at this point it all comes down to faith.

So for the next 51 injections and 360 pills....faith will have to carry me.

I have a Dragon to slay.

Day 243

2008-10-13T06:22:00.002-05:00

Well the weekend was kind of ruff, but I made it to the other side.

The nice part was that all three kids where here yesterday and I got to enjoy hanging out with them for a while.

I guess I better stop calling them kids soon. My oldest is 23, my daughter is 18 and the youngest son is 15. Some how I think that in my mind they'll be "kids" even when they're in their 50's.

It's monday morning and waking has been slow going so far. Not even coffee is helping yet.

I'll grab a shower and go to work.

One good thing about work is that it does the day pass by even on days like this.

Have a great day everyone!

Day 241

2008-10-11T06:06:00.002-05:00

I feel like yuk.

It's a normal Saturday. Everything about me is uncomfortable.

They say this feels like having a 48 week flu.....well it does, sort of. Although at full strength Peg. it felt more like the plague.

Now at half dosage I agree....this is the flu and a pretty good case of it too.

Saturdays are the worst. Sundays are somewhat better and Mondays usually suck because I'm still trying to shake it while at work. By Tuesday things seem to get better.

I'll spend today just like any other tx Saturday...searching for some kind of relief or comfort.

Still I have to look back and remember when I used to pray for 2 good days in a row. Now at least I get 4 half ass ed decent days......they may not be without sides, but at least I can deal with them.

94 days to go....sounds like a song doesn't it?

94 days of drugs on the wall, 94 days of drugs. Take one down.......

Have a nice Saturday everyone.

Day 240

2008-10-10T06:02:00.003-05:00

Well I made the call yesterday.

At first the receptionist said no, you'll have to see the Doctor for a refill.

So I told her I'm not going to argue....I just don't have it in me. I'll keep the Dec. 8th appointment and I'll do without. One more symptom on top of the side effects that I already have won't kill me.

But then someone in the back ground said something and she says to me "we don't want you to have to do that". I said I have no choice and she said if they make a sooner appointment for after 5:30 could I do that? I said sure! That's all I was asking for.

Finally she comes up with Nov. 17th at 5:30 and tells me she'll call a months worth of script in for me.

Now why couldn't she have done that yesterday?!

So that's it. Wednesday she was being a bitch and Thursday the Doctor was in so she was being all nicey nicey!

Whatever.

Now I seem to be on some kind of emotional roller coaster. Even having to take the Nuepogen shot brought tears to me last night.

Hopefully the weekend will help me pull out of it.

I'm thinking about cutting all my hair off again. My scalp is so dry that not only does it flake all over the place but it's starting to crack too. Along with that my hair seems to continue it's departure.

I've used everything. Nothing seems to help. I stopped by the drug store for my patch script last night and bought this stuff called T/Gel. It smells like Tar. It's supposed to help extreme dandruff and stuff and it's suppose to work right away.

I came home and jumped in the shower even before supper. So far other than having stinky hair, I don't think it did much of anything.

It's coming down to deciding if I want hair or do I want relief from a painful and itchy scalp.

95 days to go.....slaying this dragon is a really tuff little war.

Peg. shot tonight....at least the weekend is on the other side of that.

Have a good day everyone..

Day 239

2008-10-09T05:35:00.003-05:00

Am I having Riba-Rage or am I just really sick of all of it?

A few years ago they gave me a hysterectomy and about a year ago I wound up in menopause when my only remaining ovary decided to fail. They put me on a hormone patch to control the hot flashes that I was having every hour or two. Felt like someone would turn the heat up to 100 even when I was sleeping. Drove me nuts.

So any way, through everything that's been going on I ran my script out for the patches and didn't realize it. So yesterday I called the Gyno. and asked to have it refilled. They said what I knew they would say....you need to set up an appointment. I explained to the nurse what was going on and she said she could set up an appointment for me on Dec. 8th at 5:30 and she'd call the pharmacy with a script to cover me until the appointment. Great! I wouldn't miss work and if I had to be in Hershey that day I would be back in time to go! Not to mention that right now I am truly not wanting or in the mind frame to sit in their office (per usual) for 3 hours waiting to be called.

So it was perfect!

About a half an hour later the receptionist (who when I first met her wanted me to explain that I had Hep.C to her in front of a reception room full of people and got aggravated when I told her I'll explain my problems in private only....she's a bitch) called me and told me that she wouldn't call my script in until I saw the Doctor and that she'll make my appointment for 10:30 am on Wednesday!

I began explaining that Dec. 8th would be better or even a date and time after 5:30, but being the bitch that she is she wouldn't let up.

She even said at one point "well, you evidently need the patch or you wouldn't be calling so you'll have to come in on Wednesday!"

Yes.....I blew up!

After arguing back and forth with her, she said she'd talk to the doctor tomorrow and that I should call back.

The stupid bitch put me in tears and today when I call back, if she's got the same story, I'll tell her that one more symptom on top of the side effects that I already go through is not going to kill me. I'll tell her to forget about calling a script in for me I'll keep the Dec. 8th appt. and I'll do without until then. It's not like I could have cervical cancer or anything like that since I don't even own those things anymore! My only problem (outside of tx) is a whole lot of hot flashes!

Really! Cut Me A Break!

Anyway, yes yesterday was ruff. I felt like crap as the day went on, work was busy and the phone call just made the day worst. It all wore me out. By the time I got home I just needed my bed.

I slept 12 hours and this morning is somewhat better.

Today I will not let tx or the day get to me.

Today will be better!

I hope.

Day 238

2008-10-08T06:01:00.002-05:00

Yesterday was tuff....I felt like I had a hangover, only I didn't have any of the fun getting it.

It started letting up toward the end of the day and by the time I got home I wanted my bed.

Today is starting out better, at least the hangover feeling is gone. I guess 11 hours of sleep is the magic bullet when I start feeling like shit.

The leaves are finally changing outside and the weather is getting colder. For the first time in my life I'm actually excited that winter is just around the corner. It means that the end of tx is getting closer.

Have a great day everyone.

Day 237

2008-10-07T06:16:00.002-05:00

98 days to go.....

Well I kind of had hopes that with the reduced dosage my hair would stop falling out, but no it's still falling out. I wonder how long it'll take to grow back....

The worst part is that nothing seems to help my poor dry scalp. I'll try this weekend to sit with moisturizer on my head to see if maybe it'll help some.

The good news is that the fatigue is still going easier on me. I still can't do much of anything physical, but at least walking from room to room doesn't floor me.

This morning is kind of ruff. I hope the day gets better.....I'm sure it will.

Happy Tuesday everyone.

Day 236

2008-10-06T05:45:00.001-05:00

CONGRATULATIONS TERRY AND MAGDA!!

Day 235

2008-10-05T06:08:00.002-05:00

100 more days to count......

Friday's shot made this Saturday a little ruff as compared to last Saturday. But one thing I know, it could be a lot worst.

I think that I may have worn myself down oo much during the week and it all caught up on Saturday.

This morning is better. I'm going to get dressed and make it to the store early. It seems like if I am to have any energy during the day, it's usually in the morning. By mid afternoon the fatigue kicks in harder.

I won't mind grocery shopping this early. I won't have to deal with long check out lines where standing too long causes me to look for a place to sit down or ignorant people cause the riba-rage to roll around in my head.

Have a wonderful Sunday Everyone.

Day 233

2008-10-03T06:13:00.002-05:00

Wow what a week....and it's wearing me down.

Yesterday fatigue was more pronounced and this morning waking up was tuff.

Although it's Friday and it's another Peg. night, I think I need the weekend to recouperate.

Hopefully today won't be so busy at work because I just don't have the energy to deal with it.

Have a great day everyone.

Day 231

2008-10-01T05:59:00.003-05:00

Welcome to October!

Another Month is done. Boy is this slow going.....but we're getting there.

Yesterday was very busy at work but all in all it wasn't a bad day.

The itching is still driving me nuts! The worst part is the inside of my ears. I can't exactly scratch the inside of my ears. It's the one place that I've never had chapped and pealing skin before....what a treat! I also can't exactly use Gold Bond there, so the only thing that I can find to do it to use Olive oil on a Q-tip. It helps a little.

Wednesday night.....Procrit night. At least this injection is the easiest out of the four. It tends to sting a bit going in but doesn't seem to have any side effects that I can tell.

I'm going to call Hershey sometime today in hopes that I can drop tomorrow nights Nuepogen shot. We we're hoping that I would have had a call from my study nurse saying to drop one....but I didn't hear anything from her yet. I guess it's time for me to call to find out.

The good news is that I'm still feeling pretty Ducky!

Have a Ducky Day Everyone!

Day 230

2008-09-30T05:52:00.003-05:00

Well I think I deal with Riba-rage pretty good normally. But I have to admit that some things that would normally just irratate me really can piss me off now. I'd say I had one of those moments yesterday....actually one of those hours!

One of my jobs at work is to negotiate rates and check invoices with trucking companies. Each of the trucking companies has a sale rep. One of the trucking companies that I deal with has the majority of our LTL lanes and can't seem to keep a sale rep. for any amount of time. About 3 months ago they hired a new guy.

The new guy is a total idiot when it comes to trucking! He knows next to nothing about it and he's out in the field handling accounts like ours. On Friday I recieved an incorrect billing due to someone there re-classing our freight even though our pricing agreement has an FAK on it. I did what I always did in the past and contacted our Sales Rep. to straighten it out and stop it from happening again in the future.

Yesterday I got a call from the Rep. saying he's working on it, but that the billing may be right. After explaining to him that we have a pricing aggreement, I began to realize that the Rep. had no idea what I was talking about and he had no idea what a freight class actually was. I began explaining class and our pricing aggreement to him to him while he continued to talk over me rambling on about things that have nothing to do with our account or pricing aggreement.

The riba-rage kicked in. But I tried to control it. I told the guy that he does not understand what the problem is.....and he continued to ramble. I finally told him that I didn't care what class he wanted to call our freight, when it comes to billing for it he has to follow the pricing aggreement that we have set up with his company!

The idiot actually told me not to lecture him!

Ba-Boom! Riba-rage slammed the phone down!

This guy has to come in to see me tomorrow morning....what do you want to bet he doesn't show up? Or if he does he brings someone with him. I hope like hell he brings his boss!

After slamming the phone down I called their billing dept. where I talked to a lady name Marjie who after I explained the problem, told me to just fax over a copy of the pricing aggreement and she'll have it corrected and fax me back a corrected copy.

If the idiot brings his boss I plan to tell his boss that he should promote Marjie to Sales Rep. and get rid of the idiot!

O.M.G. ......ok I'm done ranting! lol

Outside of yesterday being an insane busy day, the fatigue wasn't near as bad a past Mondays usually were. It didn't really hit me hard until around 7pm. That seems to be my limit and then it's bed time.

Waking up this morning was slow going again. I could have used another couple of hours of sleep. Now that I'm awake though, I think that the day might turn out half assed good.

My fingers are crossed....

Ducky's still hanging out with me!

Day 229

2008-09-29T06:04:00.003-05:00

It was nice weekend in tx land.

I was able to spend the morning on Saturday plotting out and setting up signs for the bar. By around noon the Interferon decided that I was done and I spent the rest of the day lounging around a bit.

Yesterday I got up and did sme design work on 3 stained glass windows for the new wall that Jimmy's been slaving over.

I even got a load of laundry done and cooked Sunday Dinner.

I took a lot of breaks and I moved slow....but all in all the weekend was nice. At least I had some energy.

Of course I wound up in bed at 7:30 both nights.

This morning waking up was ruff. Now that I am awake I think the day may turn out pretty good!

Finally.....I'm just Ducky!

Day 226

2008-09-26T06:07:00.004-05:00

WOOHOO!!!! Terry had his post tx 6 month blood work done.....

TERRY IS CURED!!!!! WOOHOO!!!!!!

:) Congratulations Terry! :)

Yesterday morning was busy. I woke up at 6:30 and had to be at my Family Doctor by 7:30. I haven't seen him since I started tx and I had to a refill on my Propanolol for my heart. It was a nice visit. He's very supportive.

By the time I got out of his office I had just enough time to make it to work.

Run, run, run.....not the thing to do while on tx.

I made it to work on time and the work day was busy.

By late afternoon my study nurse Sandy called. My Lymphocytes have gone from .29 to .33 . Not the increase that I would have liked....but an increase no less. I'm staying on tx and hoping that my Lymphocytes continue to go up.

My Haemoglobin is still pretty low so more than likely I'll stay on the Procrit.

Now I'm waiting for the Doctor to look the blood work results over to determine if anything needs to be adjusted on my meds. I might still be able to get rid of one of my Nuepogen shots.

I've taken 122 injections so far (my poor tummy!)....61 of those have been Nuepogen. It would be nice to get rid of at least one a week.

Last night I did the normal to bed at 7:30. It seems like my body shuts down with the sun.lol

Woke up this morning sluggish and moving slow. You'd think that I'd be wide awake after 11 hours of sleep, but no, waking up comes slow.

Still the reduced dosage is much easier on me. Last week was better than the week before and this week has been a little better than that. I guess that makes next week even more promising.

It's Friday again.....All the rest of the days seem to go by so slow, but not Fridays! They seem to just jump right up.

16 more Fridays to go.

Have a nice Day Everyone.

Day 224

2008-09-24T05:44:00.002-05:00

No news is good news so far....my last blood work brought a phone call from Hershey on Tuesday telling me that I was in trouble. This time Tuesday came and went without hearing from them. That has to be a good sign.

I was feeling pretty good yesterday up until I hit the wall at around 7pm and I went to bed.

Work and sleep...that's my life for now.

I keep finding myself dreaming of what life will be like when this is all over. Thinking about all the things that I want to do that I can't do right now. Like washing the wall down that behind the fireplace in our living room or going golfing with the new golf clubs that I got for Christmas last year and never had the energy to use.

I keep thinking and planning on what I'll do after tx and all that thinking seems to be getting me through all of these days. It's the promise of a future that gets me through the present.

I try not to think about the present or how much longer I have until that future is here.

I'm hoping that I don't hear from Hershey until tomorrow. I have it in my mind that the longer it takes to hear from them the better the news.

Have a Wonderful Day everyone!

Day 223

2008-09-23T05:35:00.002-05:00

Today I am officially 2/3 of the way done.

I went to Hershey yesterday for the blood work that will determine 2 things.

First, are my Lymphocytes back up again or will they pull me off tx.

Second, if my Lymphocytes are back up will they lower my Nuepogen shot to half (once) a week.

If it's bad and they're yanking me off tx, I'll probably hear from them today or tomorrow. If it's good, I probably won't hear until Thursday......or at least that's the way it's been working, bad news comes fast and the good comes slow.

Jimmy took me to the Grande Cirque on Sunday. Amazing acrobats! What a treat! I had a blast. It was a beautiful gift of distraction from my sweet Husband. What a thoughtful man he is!

Even with the reduced dosage, fatigue continues to run my life. Even though it doesn't constantly floor me like before, I still find myself kicked in the butt at the end of the day. I feel better....I just run on low batteries. I'll just go slow and muddle my way through it.

My fingers are crossed that my counts are back up and that I get to drop one of my Nuepogen shots.

Have a Great Day everyone!

Day 221

2008-09-21T07:14:00.002-05:00

Half dosage is easier. I might not be ready to run a marathon but at least I can stay upright!

Yesterday I tooled around the house a little. I really didn't do much of anything except for plotting out and cutting some small signs for the bar.

Athena came over and cleaned the house while I hung out with the baby. He's getting so big so fast and now he's crawling like a pro! He's a very happy guy! I love spending time with him.

Today the brain fog is really messing my head up! My wonderful husband bought tickets to an acrobatic show to try to cheer me up and get us out of the house. The brain fog is that I can't for the life of me remember what the show is called! I've spent a couple of weeks waiting to go see them and you know I should be able to remember their name!

Well anyway, even if I can't pull it out of my brain, I'm really excited to go! Jimmy's beautiful and thoughtful. I'm a very lucky lady.

The fatigue is hanging around a bit today, but I'm hoping that it'll get better as the day goes on.

Have a beautiful Sunday everyone!

Day 219

2008-09-19T05:53:00.002-05:00

Well here it is Friday again already. Bad news....it's Peg. shot night. Good news....it's another week down.

The half dosage last week did make it a little easier on me with the fatigue. I'm not getting those huge heart gripping waves anymore. Now the fatigue is more like a steady little reminder to take it easy. So I try to listen. It's not like I have much choice.

I'm hoping that the shot this week is easier because I shouldn't have as much interferon in my system as I did last week at shot time. Last Saturday I still was thrown for a loop and wound up on the couch. I'm thinking that this Saturday will be better because first of all my counts should be higher now and another half dosage shouldn't be as hard hitting.

After tonight there will be 17 more weeks to go. Why does it sound so much better to me to say 17 weeks rather than 4 months? 4 months sounds like a long time to me.....I think I'll stick with 17 weeks.

If I could just get rid of some itching (damn Ribavirin) and a little more of the fatigue, I know that Ducky would come around again.

Maybe next week...

Day 218

2008-09-18T06:12:00.003-05:00

So this weekend my Husband and I are invited to 2 different weddings, both of which have the receptions at the same place in 2 different banquet rooms.

Sounds like fun doesn't it?

It would sound like fun to me but being around a large group of people, much less two large groups, just isn't my cup of tea right now. None of my cloths fit....I've gone from a size 6 to maybe a 4 or smaller. Dancing is certainly not on my card (that is unless you call all of the scratching that I'm doing some kind of new dance move!) and what the hell would I do with my hair. I look like shit and I can't stand seeing that in other people's eye's when they look at me.

By the way, no it's not my imagination! I know what I looked like before (which wasn't the greatest to begin with) and I know what I look like now.

It's not about vanity either, it's about how it makes me feel and it makes feel pitiful. I hate that. It's just not who I am.

I asked my beautiful Husband to please go without me. Thankfully he's very understanding and doesn't give me a hard time, even though I know this must be hard on him too since he has to answer everyones questions about where I am.

In a few months this will be over, I'll be out of my tx prison and life can get back to normal again. I'll make it up to him.

For now I just can't help it. It sucks big time, but life will just have to go on without me for a little while longer.....

Day 217

2008-09-17T06:26:00.002-05:00

Yesterday was half decent. I'm thinking that my counts have to be going back up.....or at least my fingers are crossed.

This morning is much like yesterday morning. It's nice to wake up and not feel like hitting the floor as soon as my feet touch it coming out of bed.

I can't wait until this is all over! Image how awesome it must feel to know what feeling normal is like again! I'm going to be like a tornado....I've spent the last 6-1/2 months making a to do list of all the things that I want to do once I'm off of tx. Believe me, I'm going to enjoy every second of everyone of them.

For now the level of fatigue has gone down. I can move and even though I'm reminded by my body to go slow, at least I feel like I can move around more.

The itching on the other hand is insane! The Gold Bond helps a little but doesn't last at all. If I where a smart woman I'd invent something to help people on tx and chemo who itch. I'd make millions because I know, as someone who is on tx, I'd spend millions just to find relief!

On another positive note, my mouth seems to be healing. My tongue actually seems to be turning back to a normal color of pink instead of the fire engine red that it has been over the past few months.

I'm not sure it's due to the lowered dosage or if I've helped it by sitting around all the time holding water in my mouth. There's just no telling. Believe me, there's just no way of figuring this stuff out!

Have a Wonderful Wednesday everyone!

Ducky's not far off now!

Day 216

2008-09-16T05:42:00.002-05:00

When I wake up in the morning, I lay there in bed and try to access how fast I can move to get up. Almost every morning my body says "Ya better go slow!".

This morning I woke up and laying there I waited for my heart to do it's pounding and my body to give it's warning....but my heart stayed steady and the only thing that my body had to say is "You itch!".

This is the first morning in a very long time that I've been able to wake up and move around somewhat normally.

I'm not ready to run a marathon, but at least every movement that I make isn't sending me into major heart pounding fatigue.

Are my counts going back up or is the half dosage of Peg. finally giving me some relief.....or both.

My fingers are crossed that it's both and I'm hoping that this day continues to be a good one.

It's time to come home Ducky....

Day 215

2008-09-15T05:50:00.002-05:00

Saturday and Sunday where sent mostly sleeping or hanging out on the couch.

Saturday was hardest. The fatigue was horrible. Any movement that I made set my heart racing. I wound up going to bed just to sleep through it all.

Sunday I woke up feeling much better and this morning, unlike most Mondays, I actually feel like I could make it through the work day.

One thing about the half dosages, I should start feeling somewhat better this week. At least I have a positive outlook that I'll feel better.....

I remember being reduced to half dosages on my Peg. earlier in tx and it made all the difference in the world for me. Of course at the same time they reduced my Ribavirin and this time they didn't. Still I should start feeling the difference.

Have a Happy Monday everyone!

Day 211

2008-09-12T06:01:00.002-05:00

It's Friday....

Funny how I now go through each day asking myself "What day is this? Oh yeah...Monday, it Nuepogen night." or Wednesday, it Procrit night....Thursday, it Nuepogen night. And then there's Friday, Peg. night.

Nice thing about whats happening is that if my counts go back up and they allow me to remain on tx, I'll stay at half dosages and I may be able to drop the Nuepogen shots that I take twice a week. No more bone pain and half the jabbing! That would be nice.

There's lot's of fatigue this morning, but at least the evil little son of a B. Dummer Boy has let up with beating on my brain! I hate headaches and yesterday it just kind of hung out in the background all day long.

I woke up this morning and it was finally gone. I can deal with the fatigue, having a headache along with it just does not make me a happy gal.

Maybe the day will get better. Sometimes it does!

Have a Great Friday everyone!

Day 210

2008-09-11T06:05:00.002-05:00

The little drummer boy has been beating on my brain all night long. I was kind of hoping that I'd wake up this morning without him, but there he is still beating his evil little tune. I grabbed some ibuprofen and coffee.

We've decided to cancel our NY trip to see Terry. Bums me out, but between risking getting an infection or virus and being just down right too fatigued, I suppose we're making the right choice. Still it bums me out because I was looking forward to seeing Terry and Magda and then shopping in China town for a scarf or berret.

I guess we'll just have to plan a trip to California to visit them when this is over and I'll revert to online shopping for the scarf....

My dear friend Susan found the Gold Bond Medicated Anti-Itch creme for me. It does actually help somewhat. But it isn't very long lasting. Something is better than nothing. Thank God for good friends!

Have a Good Day everyone!

Day 209

2008-09-10T05:51:00.002-05:00

Well I didn't expect to hear from Sandy, my research nurse, so soon....but when I saw Hershey's phone number on the caller ID before answering the phone, I knew something was wrong.

My counts have dropped lower.

The count that I don't take a rescue drug for is my Lymphocytes. They've been kind of low ever since the I was on the Trial drug. But even though it's why they wound up pulling the trial drug, it was never really that big of a problem for me. Mine bounced back up after stopping the drug.

Yesterday Sandy called me to tell me that they've dropped. They dropped very low....down to .29. She explained to me that if they drop down to or below .20 Roche will discontinue the trial and tx on me.

Dr. Smith is lowering my Peg. to 50 units in hopes that my Lymphocytes go back up. I have 2 weeks and they'll run the blood work again.

If they go back up I'll remain on the 50 units of Peg for the remainder of my tx. She's also hoping that with the reduced dosage that I may have the chance to get off of the Nuepogen and Procrit. She'd like to get me off of some of these drugs....I'm on so many.

I've been undectable all this time, so Dr. Smith is thinking that the reduced dosage should be enough for the last 18 weeks.....that is so long as my Lymphocytes bounce back over the next 2 weeks.

My ability to bounce back has been pretty good in the past. My fingers are crossed for that to continue......for the first time in a long time, I'm scared.

With my counts down at least I can understand why I'm feeling badly.

This news for me comes on a day that my friend Rosie was discontinued from the trial because of low platlet counts and still having a viral load after 193 days of tx..

I can't imagine. Coming all this way and being told that there is a chance of not completeing tx is a scary thought. I can't even pretend to fully understand what she's feeling right now.

My heart goes out to you Rosie.

Day 208

2008-09-09T05:41:00.004-05:00

Yesterdays Hershey appt. went ok. I finally got the dreaded copy of my blood work from my last visit. Nothing on it shows that I can up my dosages....that's good, I couldn't handle more. At the same time it shows why I don't feel so great a lot of the time.

My WBC is 2.3, Neutrophils ABS are at 1.10 and my Lymphocytes are at .83....that's low but it's been so much lower and the Nuepogen seems to be doing the job.

My Platelet Count is at 66.

All and all my counts are low but holding their own. This week I'll call for my blood counts just because this report is a few weeks old and I've been feeling a bit more under the weather than usual. We worry that these counts may have dropped even lower.

They refilled my Neupogen and Procrit scripts and gave me a script for Ambien to help me sleep. She also told me about something that might help with all of the itching, Gold Bond Anti medicated Anti Itch creme. I'll stop at CVS tonight to get the Ambien filled and I'll search for the cream....hope it works!

The bad news was that I lost another pound. At least it was just 1 pound this time.....

Lunch with Iris was a treat! It was so nice to sit with her for a while. She looks radiant!

We had lunch at Houlihans in Hershey. I couldn't make up my mind on what to eat so I just picked what I thought would be a safe pick. I ordered a Tuna salad. Big mistake! Raw Tuna on a bed of lettuce with bananas, cashews and a sauce that was very spicy! Yuk and owww at the same time. I could have dealt with it until it became spicy....my mouth finally said no way.

The food for me sucked...but the company was so wonderful. It was so nice to sit with Iris for a bit. I wish I had more energy and felt up to it, it would have been nice to go shopping or to the Hershey Chocolate world with her.

Maybe next time....

I came home and went straight to the couch and then to bed.

Waking up this morning is kind of hard but I'm getting there.

There's a thunder storm passing by this morning and at 7:20 it's making it dark and dreary out. I feel like the morning looks.

Time to get ready for work. Maybe the day will grow brighter.....

Have a Nice Tuesday Everyone!