Saturday, October 31, 2009

Forgive me

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

Friday, April 24, 2009

With Love

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

Friday, February 20, 2009

Week 6 roller coaster

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.........

Wednesday, February 18, 2009

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

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.

Friday, February 13, 2009

Recovery - week 5

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!

Tuesday, January 27, 2009

Recovery

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!!

Wednesday, January 21, 2009

Recovery - Day 9

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!

Saturday, January 17, 2009

Recovery - Day 5

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!

Friday, January 16, 2009

Recovery - Day 4

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!! :)

Thursday, January 15, 2009

Recovery - Day 3

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!

Tuesday, January 13, 2009

Recovery - Day 1

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!

:)

Monday, January 12, 2009

Day 335

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!

Saturday, January 10, 2009

Day 333 - 2 to go

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!

Thursday, January 8, 2009

Day 331 - 4 to go

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.

Wednesday, January 7, 2009

Day 330 - 5 to go

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!

Tuesday, January 6, 2009

Day 329 - 6 to go

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....

Monday, January 5, 2009

Day 328 - 7 days to go

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.

Friday, January 2, 2009

Day 325

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

Thursday, January 1, 2009

Wednesday, December 31, 2008

Day 323

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.....

Monday, December 29, 2008

Day 321

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.....

Saturday, December 27, 2008

Day 319

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!

Thursday, December 25, 2008

Tuesday, December 23, 2008

Day 315

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!

Monday, December 22, 2008

Day 314

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!

Friday, December 19, 2008

Day 311

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!

Thursday, December 18, 2008

Day 310

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!

Wednesday, December 17, 2008

Day 309

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!

Tuesday, December 16, 2008

Day 308

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.

Monday, December 15, 2008

Day 307

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.