Saturday, May 31, 2008

Day 110

Took my reduced shot of Pegasys last night. I woke up this morning a little slow and I have some of that weighed down fatigue feeling going on.....but all and all I think I can still function. It's not too terrible. I'll do what my body has already taught me....I'll just go slow.

Jimmy's in Ocean City this weekend. He escapes to there once a year with the boys to go play in an annual Golf Tournament. They look forward to a weekend of partying and Golfing. This year the tournament couldn't have come at a better time for him. He really needed this break away.

My plan each year while he's in Ocean City is to take the kids to Sea Side Heights on the Jersey Shore. I had to postpone it this year because I just didn't know what my re-starting tx would be like. I didn't want to drive all that way with the kids to find out that I'm couch ridden. So the kids and I will take our trip in July or August before they go back to school.

All and all, I don't think this weekend will be a total washout. I'm hoping that I start feeling better as the day goes on....the day will tell.

Friday, May 30, 2008

Day 109

The half shot of Nuepogen has me waking up this morning with bone aches. At least it's not bone pain like I get from whole shots. Tylenol will take a lot of it away for me.

I got the call from Hershey. I restart tx today at the lowered dosage. 3 Ribavirins a day instead of 4 and a half dosage of Inerferon tonight. Here we go again.

I'm sure that this day will get better before it has to get worse.

Thursday, May 29, 2008

Day 107 & 108

Yesterday was a good day. The weather was beautiful but chilly for the ride to Hershey.

Got my blood drawn and now it's a waiting game. They're putting me back to a half shot of Nuepogen for tonight so maybe I won't have so much bone pain tomorrow. Since I'm feeling so well we're all hoping that my levels are back up. Only the blood work can really tell.
If the blood work is good news they'll have me start the Ribavirin again but at reduced dosage, taking 2 in the morning and 1 in the evening.

I'll also restart the Pegasys at a reduced dosage again - 50 units instead of 100. Half dosages and slowly building back up as hopefully my levels continue to return.

They'll have me come back next week for more blood work so they can monitor what the riba and Peg. are doing.

Yesterday I felt Great! I got tired early in the evening, but the whole day was spent feeling almost normal outside of the fatigue reminded me to slow down on the walk into the Hospital from the parking lot.

I took the Procrit shot last night. Procrit is an easy one for me. The only sides that I get from it is that it's slow waking up in the morning. Other than that, it's a breeze.

Today will be another good day. I'm going to enjoy it while I can because I know tomorrow I go back to tx.

Maybe this time around will be better since my bloods will be up for the first time since going off of the trial drug and I won't be taking the trial drug on top of the Ribavirin and Pegasys.

We'll see. My fingers are crossed....


For today Ducky and I are still dancing (slowly)




Rosie....are you getting any better? My thoughts are with you......

Tuesday, May 27, 2008

Day 106

Yesterday was amazing! I felt Great. I wouldn't be able to run a marathon but even the fatigue was a little bit easier on me! I was able to move a little bit better than I have been able to.

Jimmy and I went for a ride looking for a couple of more plants. We found Chives, Onions, Tomatillo's and strawberries. The onions I put in the yard and the rest I planted in large planters for the deck.

Both the yard and the deck look wonderful now.

We also took a trip out to my Father-in-laws house and we put up his screen room for the Summer that Jimmy and I bought him for Christmas.

We stopped on the way home and grabbed chicken to BBQ on the grill. Jimmy's the grill master! Everything that he cooks on the grill is perfect! So he grilled while I planted.

The yard and deck are now full of plants. There's Veg., spices and strawberries everywhere! I can't wait to start picking!

I woke up this morning with bone pain from the Nuepogen shot last night. Thing is, after such a wonderful weekend I don't mind it yet. I'll take my cocktail of Tylenol and an Ibuprofen and try to mellow it out. I know that Nuepogen is my friend and is helping my body....but the full shots really cause some funky ass pain in my bones.

Tomorrow is Hershey day and I know they'll have me starting tx again. I know it's time....I'm afraid of waiting any longer to restart. I'd hate for my little dragon to raise it's head after all of the battling we've been doing.

It's time to go back. Hopefully this time around, without the trial drug, my blood counts will hold.

we'll see.

For today, until this pain goes away, Ducky is taking another break. The pain only usually lasts one day....so maybe he'll be back tomorrow.

Monday, May 26, 2008

Day 105

Yesterday was great! With the help of my son's (mostly Cory), I got my garden planted.

All day I felt great! My energy level has stepped up a notch. Before anything that I did would cause waves of fatigue and dizziness. Walking would cause me to want to sit down every 10 to 15 feet. But yesterday I was great so long as I didn't push any harder then digging the small holes to put the plants in. That's where my Son's came into play. They turned the soil and even widened my beds for me. Cory transplanted a bunch of Hosta's and made my one bed so much bigger. I Love it!

By the end of the day all my plants where planted in the beds and I have 2 very large planters with tomato plants in them. I also have a nice sunburned back to show for it. It's a little ouchy but it's the kind of ouchy that I really love right about now.....It's normal, familiar pain. Makes me feel somewhat normal.

Today I'll talk Jimmy into going to get more plants for the planters on the deck. Maybe some spices and a couple of plum tomato plants. Most of the plants in the garden are planted for Eddie and the restaurant. He loves using fresh spices and veggies. I love them too!

I am definitely feeling ducky! I know I have to enjoy this while I can because after my Appt. in Hershey on Wednesday I'm pretty sure I'll be back on tx. I guess it's time. I hate the idea of waiting too long and having the virus make a come back.

I'm not going to think about next weekend....I'm going to continue to enjoy this one! :)







Here's to being just Ducky!!!! Life may need to go a little slow....but it's soooo good!












Rose, Have you taken your Pegasys yet?.....How are you?

Sunday, May 25, 2008

Day 105





The Wedding was Beautiful! The day was Beautiful!Nick and Jen are now Mr. and Mrs. and it all went off perfectly.

While Nick was beet red and said that he thought he was going to pass out about 3 different times during the cermimony, he made it through fine. There was a cute moment when Nick had her ring in his hand and the Priest had to remind him what he needed to do with it as he stood there staring down at it. Everyone had to laugh a little. It was sweet.

I made it through almost most of it, but I had Jimmy take me home after the meal, I simply couldn't go any further and I was a little affraid that if I pushed it any further I'd get really dizzy or something and the last thing that I wanted is for me to be any kind of problem at their wedding. It was better that I went home. I made Jimmy promise to go back and my youngest son Cory stayed with me so I wasn't home alone. It worked out perfect.

Only problem was that even though my bed was calling my name, my arm began hurting so bad that it was 1am before I fell asleep. I must have pinched a nerve or pulled a muscle because this morning it's fine again. Still it caused one of those "What the hell is that" moments when you sit and wonder if it's from drugs or just something simple. Since it's gone this morning, I'll call it something simple.

I woke up this morning feeling pretty good. After all the festivities, feeling good this morning has got to be good news! My blood levels have to be going back up otherwise I'd be bed ridden.

I think I'm feeling pretty Ducky so far....I hope it lasts the day!









CONGRATULATIONS

NICK AND JEN!!!!!!!!

Saturday, May 24, 2008

Day 104

Last night both events seemed to go off well.

Crystal made it to and from her Senior Prom looking absolutley beautiful!
She came home with sore feet and a very happy face. Prom Night was everything that she thought it would be. She had a blast!
The picture is of Crystal and her prom date Tabby. Crystal is the one in front.

The rehearsal dinner turned out nice also. I didn't really get any decorating done. My bones where killing me and I just couldn't get the bows tied for 14 centerpeices. We just went with simple candles....they worked out fine. Most of my time getting ready was spent washing water and wine glasses and getting the tables set. Cory, my son, even pitched in and thank god he did because we wouldn't have been ready on time without him.

By the time everybody showed up I got dressed in clothes that no longer fit me. I bought a new dress for the wedding but I forgot about needing something to wear for the dinner! lol I must have looked like I was wearing someone elses clothes!

Any way, the food turned out wonderful! Our cook Eddie is the best!!! Prime rib, Stuffed Chichen Breast and Crab topped Salmon. Eddie did the Roads End very proud!

Half way through dinner, all the running around caught up to me, the bone pain set in full force and was not going to let up until I layed my body down with 2 Tylenol and a Ibuprofen. So I ate what I could and excused myself hoping that everyone would understand that I wasn't being anti-social. I had my "stupid smile" plastered on for as long as I could stand it and then I couldn't keep it there any longer. I went up to bed.

Meanwhile, I hear that everyone had a wonderful time! lol....I know Jimmy did! He came up to bed in the wee hours of the Morning feeling happy go lucky and in no pain! Of course he paid for drinking too much wine a few hours later with major heartburn....poor sweetheart!

Today I woke up and the bone pain is gone. I'm a little washed out feeling and I know I'll have to go slow today, but all in all I'm starting to feel better again.

We have to leave for the Wedding at noon and I need to get my dress ironed, take my son for a haircut and pick up a pair of hose. That's it, the rest of the day will be just enjoying the Wedding. Both Jimmy's Son and his Bride are very nervious! But what they don't know yet is that everything is going to be perfect. The weather is perfect and everything is falling right into place.

A perfect Wedding day for a perfect couple!

Friday, May 23, 2008

Day 103

As expected I woke up this morning with bone pain from the Nuepogen shot. I hate taking a full shot! But I know what to do...I'll grab 2 regular strength Tylenol and 1 Ibuprofen this morning to knock it down to a dull ache and then I'll follow it up throughout the day with more Tylenol. My research Nurse taught me that one and it works pretty good. Keeps the bone pain down to aches.

Tonight is my Step-son's rehearsal dinner downstairs at our bar. I wanted to decorate the restaurant but I can't do it. I did pick up candles and ribbons for the center pieces on the tables. That's about all the decorating that I'm going to get done. I wish I could do more.....

Tomorrow is the wedding. With my Pegasys shot being held back because of my low blood levels, I'm sure I'll feel better then if I had to take it. Hopefully I can make it through the whole thing. My fingers are crossed.

Thank God that it's a 3 day weekend this weekend.....I think I need it.

I found this poem that I thought was so fitting, it had to be written by someone on tx. It just fits so well......

The pity party
by Sue Falkner Wood

Let’s have a pity party
It will only be us two
You come just as you are
We’ll have a barbecue.

We’ll “roast” all our relatives
Those dead and those alive
While our bodies fall apart
How can DNA survive?

We won’t have cake or ice cream
We’ll just have pity pie
Topped off with guilt, regret
And end with “Why, oh, why?”

We’ll live it up
We’ll wallow a bit
And when we’re finished
We’ll pitch a big fit.

We’ll stomp our feet
And pull out our hair
We’ll complain to the world
That life isn’t fair.

We’ll whine about doctors
Do they do all they can?
We’ll malign the whole profession
As we blame it on “the man.”

When we become exhausted
We’ll play “all fall down”
We’ll see if life makes sense
As we collapse on the ground.

We’ll stay down for awhile
Then we’ll howl, “ENOUGH!”
This isn’t really living
It’s more like “blind man’s bluff.”

We’ll open up the windows
Jump back into life
Shake it all off
Surpass all the strife.

Our bodies may be wounded
We may have daily pain
But thank God we’re still alive
Not circling the drain.

So stand up tall
Spit life in the eye
It’s really tragic
If we don’t even try.

Thursday, May 22, 2008

Day 102

Yesterday was filled with fatigue and getting dizzy. But no nausea. By the end of the day I was wiped out and feeling down.

I took the Procrit shot last night and went to bed.

I thought I was doing better. But I guess I'm just managing better now that the nausea is gone.

My blood work from last week came back. My Nuetrophils and Lymphocytes are still going down and now so is my Haemoglobin.

Nuetrophils = .48
Lymphocytes = .51
Haemoglobin = 9

Hershey has me holding the Ribavirin and my Pegasys. I took the Procrit last night and they have me taking a full shot of Nuepogen tonight and a full shot of Nuepogen on Monday. To me, full Nuepogen shots are a sentence to the day after bone pain. I don't look forward to them at all.

I go back to Hershey on Wednesday to redo my blood work. With my Haemoglobin dropping, I guess a blood transfusion is still on the table.

I guess I'm not having such an easy time recovering from the trial drug.

I knew I had an awful lot of fatigue and I keep getting dizzy spells .....but I thought that maybe it was just what I had to expect. I don't know how I should feel. I just keep trying to manage the symptoms and get through my day. It's been so much better since I got rid of the nausea....I guess I've just been excepting whats left.

As though this new knowledge has told my brain that's somethings up (or it's a coincidence) I woke up this morning feeling even more weak and fatigued.

I know I just have to go slow. I have to sit as much as I can and not rush anything.

I am becoming scared. My blood levels should have leveled off by now. They shouldn't still be dropping. Now my Haemoglobin is going too? It's been 14 days since I stopped the trial drug and still I'm not making it back. How long can a drug remain in my system?

Mentally all of this is starting to hit home. I'm getting tired.

As before, I know that my depression will change as my levels return.

But this morning I'd like to sit and have a good cry.......

Wednesday, May 21, 2008

Day 101

Last night was my Daughters last Band recital at the High School. Kind of sad that my little girl is graduating in less than a month!

Yesterday was a pretty good day. Fatigue is still hanging around and I still had some achy bones, but all and all it was a good day!

I guess that when you go through so many very bad days, your concept of a "good day" is lowered and you learn to appreciate the days that you can make it through without feeling as though you need to lay down.

Well I didn't hit the "I need to lay down" part of the day until I came home at 9:30 after the concert. So I made it through the whole day upright and doing good.....I just go slow.

I woke up this morning and I'm feeling pretty darned good! No aches at all yet and even though fatigue finds me when I move quickly, I know that I'll deal with that by going slow again today. I'm learning how to conserve energy by doing a lot of sitting and not rushing anything. My body is teaching me how to manage fatigue....I have no choice but to learn.


I still feel Ducky!!

Tuesday, May 20, 2008

Day 100

Triple digits! 235 more to go.....

Last night I had half of the Nuepogen shot. This morning I ache a little but it's not the pain that came with a full shot, so life is getting better. Tylenol should take care of it.

I woke up this morning feeling ok. Outside of the bone aches my head is clear, no brain fog. I'll still have to move slow at times as the fatigue is still there.

All and all I think I'm going to have more good days each week now that the trial drug is gone and my blood counts return. At least now I'm taking the Nuepogen and maybe without the trial drug it will be able to work.

There was one interesting thing that we learned at Hershey yesterday. There's an independent auditor who does nothing but go over the data from Trials. The FDA requires all trials to be overseen by an independent company like this. I'm sure if this company is the reason I was pulled off of the trial drug before everyone else, but I do know they are the ones who wound up pulling the trial drug from the study. It wasn't Roche that did it. Another surprising note is that this independent company made their decision based on our 8 week blood work.

The trial is not over. They feel that the drug is way too strong. They did change their minds about completely removing everyone at the same time. They decided to have everyone continue to take the drug until they hit week 12. Then they remove them.

I'm just wondering how long it takes to get this drug out of my system. But no can say.....I guess that's part of being in a trial.


For today I'm achy and a little fatigued...but all and all Ducky is still here!

Monday, May 19, 2008

Day 99

Well we're back from Hershey.

The trial drug is done but the study is still ongoing. We still have the same appt. schedule, we still continue keep the same log.

The Pegasys is now open labeled. We'll be taking the standard 180 mg as everyone else. That is once my blood levels go up enough to start raising my dosages up to full.

Right now I'm waiting to hear what my blood work from today says. If my levels have gone up enough they put my dosage up to 75 units. Last week I took 50 units. They want me to work my way back up slowly.

I'm feeling pretty good today. I'm still a little weak and fatigue seems to visit with anything that I do that's physical, but I guess thats pare for the course considering my blood counts are still probably low. Not to mention that the Pegasys has a good reputation for fatigue.


Anyway, Ducky is still with me and that's what counts!!

Sunday, May 18, 2008

Day 98

It's been 11 days since I stopped the trial drug and I can tell a difference.

Usually after a Peg. shot I'm wiped out completely for 3 days. On the 3rd day I slowly start coming back. By the forth day I'm feeling better but then I take the Nuepogen and feel like crap on the 5th day. The 6th day I start feeling better again but then I take the Peg. again start it all over. There was nausea every day...even on the good days.
Now, 11 days off of the trial drug, I have no nausea. Some heartburn but nothing that Pepsid can't handle.

Yesterday was day 2 after the shot and while there were periods that I had to take it easy and lay down, I was still able to plant half of my garden, do the dishes and get some laundry done. I didn't do anything heavy duty and I went slow so that I wouldn't over do it. But I'll tell ya I felt so much better than I have in the past 13 weeks.

I know that some of that may be because I only did a half dosage of Pegasys. But with my blood counts still low and my just coming off of the trial drug, I'm hoping that I handle full reg. tx just as well when I'm back up to normal dosages, minus the trial drug.
This morning I forced myself to sleep in. I woke up at the normal 6 am but made myself go back to sleep. lol....I didn't wake up again until 9:45! I never sleep this late, but it felt good.

I feel good. No aches or pains. No washed out feeling. No major brain fog. A little weak....enough to tell me to move slow (probably just from my blood levels being low yet).


All and all.....ducky is home!

Saturday, May 17, 2008

Day 97

Thursday night was only half a shot of Inerferon and Half a shot of Nuepogen, But they still kicked my ass a bit. I'm wiped out.

The good news though is that I'm not nauseuos. I'm just drained. I have no energy at all. I guess that's expected since my blood levels are still low and well it is still inerferon. Not to mention that I don't get along too well with Nuepogen either.

Is this what regular tx feels like? I'm glad that they didn't tell me to take the full shot of Inerferon. I think they're right....my body isn't ready for it yet. It does need to recuperate from the trial drug more.

The one thing that I am looking forward to is seeing how many good days I wind up with now that I'm not on the trial drug. I was having maybe 2 good days, if that, a week.

Yesterday I had to go lay down at work for a while. (Thank God for Susan who watches over me at work). It helped me make it through the day. All I wanted to do was go to bed. I came home last night, ate and laid on the couch. Then I went to bed early.

This morning I'm still washed out. No energy at all. But still no nausea either. I just hear the couch calling my name.

I'm hoping that I start to feel better later today. Jimmy surprised me and picked up the plants for my garden yesterday. :) Now I just need to feel well enough to get them planted. I won't push myself. The plants are fine for days the way they are.

So that's it..Ducky's not home but I know he didn't go far.

Friday, May 16, 2008

Day 96

Well here's how I understand it.

There are different types of white blood cells. Neutrophils are one type white blood cell and Lymphocytes are another.

Neutrophils are the White blood cells that fight against infection invading our bodies. Lymphocytes fight an infection that is attacking the body.

It's almost like the Nuetrophils are the State Police and the Lymphocytes are the Marines. The one white blood cell is a backup for the other.

Lymphopenia is what the condition is called when there is a low Lymphocyte count.

The problem with the Trial drug is that it first caused the Neutrophils to drop very low. That's what made them put me on Neupogen, they tried to get my Neutrophils back up.

But now the double whammy has come and our Lymphocytes have also fallen way too low.

My Nuetrophils are at .41 (They should be 2.03 to 8.36) and now my Lymphocytes are at .58 (they should be 1.02-3.36)

Having one fall low is bad enough, It opens a big door to infection.

Having the both of them fall not only opens the door to infection, but if an infection where to take hold, there are no defenses left to fight with. It becomes possible for a paper cut to become life threatening with both of them gone.

I think that Roche pulled a few of us who had the lowest counts on both first and then took a couple of days to make a decision on the rest of the trial patents.

Once they made the decission that it was effecting too many of us, they pulled the drug on everyone. Hershey has trial patients who are at week 10 through week 16. They pulled them all.

For as much trouble as I kept getting into, part of me is thankful. I've been way too sick and I've been just trying to battle through it. It's been a very hard road.

Last night I had to take the Nuepogen shot and I restarted the Inerferon. They have me restarting the inerferon at a half dose and they'll build me back up slowly to a full dosage over time.

This morning is kind of ruff. It's hard to wake up and I have that foggy headed feeling going on. The bone pain is here but not as painful as it is when I take the full shot of Nuepogen (I'm taking Nuepogen in half doses now....half on Mondays and Half on Thursdays). I think that the Tylenol should be able to handle the pain. Damn little drummer boy is hanging out on my arms.

All and all I don't think I feel as bad with the shot as I did when I was on the trial drug every day. It's been 8 days since I stopped the trial drug, so maybe some of it is still in my system and later down the road this might get even easier.

I know that even standard treatment is going to cause me some trouble. But after what I've been through....I can deal with trouble....I'm just glad that I don't have to deal with the hell.

Ducky took a break today.....but that ok, it's expected. It's the day after a shot day and maybe he'll come back around tomorrow.

Thursday, May 15, 2008

Update

I just spoke to my Nurse who said that Roche is pulling everyone from the trial because the drug is causing Lymphopenia.

Has anyone else heard anything??

Day 95

Yesterday was wonderful! No nausea, no Tylenol! Just a bit of fatigue at the end of the day but that's ok because I don't mind going to bed early when I can wake up the next morning feeling wonderful again. I actually felt human!

Last night was Procrit night. That's ok because although the shot stings like a s.o.b., it's the one drug that I take that doesn't seem to have side effects the next day.

I woke up this morning feeling, as Terry would say, "Groovy"! lol. No Aches and pain and no nausea. I'm actually awake and wishing that this was a weekend day so that I could enjoy getting a list of things done that my mind is now planning. I want to stop for garden plants tonight. Hopefully my feeling good will last through the weekend. My fingers are crossed....

I'm still waiting to hear from Hershey about when I have to restart the Interferon. Right now I'm only taking the Ribaviron. I'm hoping that without the trial drug the Interferon won't pack such a bad punch. We'll see....

Tonight is the dreaded Nuepogen shot. It's only a half shot so maybe it won't be so bad.

For today, ducky is staying at my side.

Wednesday, May 14, 2008

Day 94

I got a call from Hershey. But it wasn't about the blood work that I had done yesterday....they didn't have that back from my local Hospital yet when they called.

Sandy, my research nurse, called and told me that she was contacted by Roche and told to take me off of the research drug. They didn't tell her why, they just told her to have me continue on with the Pegasys and the Ribavirin.

Out of the 11 people at Hershey, 2 of us have been removed from the trial drug and Hershey has yet to find out why. It could be something to do with our 12 week blood work that was taken a week ago. My mind is spinning.....it could be a lot of reasons.

On Monday I go back to Hershey and I take all of my meds with me to be resupplied with new Ribavirin and Pegasys.

Part of me is sort of happy because I know that the trial drug has played hell on me. It's been 5 days since Hershey had me stop the trial drug due to my blood levels dropping and I'm finally feeling very good this morning. I was really dreading my having to restart the trial drug anyway.

There is a part of me that's worried also.....will I continue to kick my little dragons ass on just the Ribivirin and Pegasys? Is there something bad in my 12 week blood work that caused them to stop the trial drug? Did something happen to someone somewhere else while on the same dosage that I'm on?

I have so many questions now....some of them will be answered on Monday, but I have the feeling that most will not ever be answered.

Any way that you look at it, the trial drug is over for me and I finally feel Ducky this morning!

I hope this has turned out to be good news for me. I have to remember that I did have 12 weeks of a treatment that most people do not have of a powerful drug that kicked this virus' ass and made me undetectable at week 2. Made me feel like hell warmed over....but it still did the trick...I have to hope that it did enough.

Besides, standard treatment has worked for so many people that I know....


For this moment, for this morning, I think I'll just celebrate finally feeling Ducky!

Tuesday, May 13, 2008

Day 93

Yesterday I was getting so much better. I hardly had any nausea and even though I'm still weak and a little dizzy, I know that my levels are going back up. Ducky is coming home.

I took half a shot of Nuepogen last night and I think it screwed me up a little this morning. Not as bad as a full shot, my arms are aching slightly but at least they are throbbing like i usually get with the full shot. I have that washed out feeling and I really didn't want to get out of bed this morning. But all and all, now that I'm up, maybe I'll be able to shake this off.
I go for my blood work this morning at the local Hospital. My fingers are crossed that it turns out good and I don't have to have a transfusion. I don't think I will because I'm feeling better. My worry now is more about being put back on the study drug and the Interferon. I'm praying that they don't put me back on full strength again as it will make my levels fall all over again.

I really need to have a few days with my friend Ducky. I need to mentally have a break away from feeling bad. I know I've been undetectable.....but after feeling so bad for so long I tend to loose focus on what being undetectable really means. I forget why I'm doing all of this.

Just a couple of days of feeling good would make my mind so much stronger.

I guess I'm just getting tired and there are soooo many more weeks to go. I try not to look at them. I try to focus on the 24 week mark and getting myself off of the trial drug. I realize that tx will still have it's ups and downs even after the trial drug is gone.....but with less drugs going into my system I imagine that there would just have to been less sides.

Time will tell.


For today I'll try to punch through this fog and find ducky....

Monday, May 12, 2008

Day 91 - 92

Mothers Day was nice to me. I slept in until 9am and when I woke up I wasn't feeling half as bad as I have been. Still a bit weak but not to the point that I had to spend the day laying down. I was even able to eat all day without nausea.

All in all the day was so very nice. Cory, my youngest gave me a beautiful flower plant, Crystal brought me roses and a cake, and Jonathan brought me roses and a teddy bear. Crystal and Jimmy cooked me dinner and the boys cleaned up the kitchen afterwards. It was a beautiful day.
Last night I had yet another wonderful sweet surprise. My next door neighbor stopped by to drop off a present for me. A little plant and some moisturizer with a mothers day card telling me that she's made an appointment to give platelets on May 19th in my honor, knowing that I may have been faced with another blood transfusion. How sweet is that! There are so many good people in this world and I am so lucky to know so many of them. It's such a beautiful act that I'm not sure there are words enough to say thank you to her. Claire is an incredible woman.

I woke up this morning still feeling much better than I have in days. I haven't taken the study drug or the interferon since Thursday and I think it's working to bring my levels back up again. I no longer feel like I need to be bed ridden, but I'm still weak and become dizzy pretty easily. Good thing is that I still don't have the nausea this morning so maybe I'll able to eat today again and gain more strength as I do.

I'll go through my day slowly and even though I'm still pale as hell, I hope that my strength continues to return. This is such a slow process trying to get my levels back up. It doesn't seem to want to happen over night. I'm hoping that I'll dodge the transfusion this time.

Tonight I take another half a shot of Nuepogen. I'm hoping that because it's only half a shot that I won't feel like crap tomorrow. I would very much like to continue on to feeling ducky and not take the step backward. I really need a good feeling day right about now. It's just been too long.

Ducky is on his way home....I know it!

Saturday, May 10, 2008

day 90

Well I'm hoping that this isn't as bad as the first time around with my levels dropping. I'm pretty sure that by this many days into it last time I wasn't able to pick my head up from my pillow. I feel weak, nauseous and somewhat dizzy....but I don't think it's as bad as last time, so maybe we caught it on time?

This morning I woke up with some kind of cold sore on my mouth and I'm still pale as hell....but at least I can sit up right.

I'll spend the weekend on the couch. Not the way that I wanted to spend Mothers Day weekend...I wanted to plant the garden. Tx has over ruled that.

The kids are here for the weekend so I'll have them give me a Mothers Day present by cleaning the house and doing the laundry.

Maybe the garden will get planted next weekend.

I'm still waiting for Ducky......

Friday, May 9, 2008

Day 89

Roches blood work came back -

WBC 1.2
Haemoglobin 10.1
Platelet 42
Neutrophils, abs .49

They've stopped the Trial Drug and Inerferon. I took a full shot of Nuepogen last night and will take a half shot of Nuepogen on Monday night. We continue the same Ribavirin as before.

I'll go on Tuesday for blood work again. Hopefully my levels can pull back out of the spiral before they drop any lower.

We're pretty much hoping that we caught it early enough this time that we'll be able to stop the fall.

I really don't want to have another blood transfusion.....it freaks me out. If I have to I will but I just can't help but remember that it's what more than likely caused this whole mess to begin with. I know they test the blood supply differently now a days....but really they didn't know about Hep C back then to test for it anyway...what don't they know about now?

It's a mental trip, I know.

If I have to then I have to.....

I woke up this morning with bone pain in my arms and back. Nausea is pretty nasty too. They say that's from the Nuepogen and it's one of the biggest reason that I was going to start dividing the Nuepogen shot in half over 2 days instead of taking the whole whammy at once with the Procrit. But with my levels dropping they want me to get as much Nuepogen into me as possible. So a whole shot it is and this morning is ruff.

Mentally I'm just as down as my blood levels. The 2 are definitely directly related. I can usually cope ok with the normal daily tx sides....but when I get like this, I get to the point that the frustration of it brings me to tears. Hell everything brings me to tears...

I just need to get my levels up and I know everything will be ok again. It'll take a few days for that to happen....but if they'll just stop dropping I know I'll be alright.

Time will tell. For now I just hold on, pray and I force myself to eat.

Maybe the day will get better.......

Thursday, May 8, 2008

Day 88

Well I knew from the way that I feel that my blood levels where dropping....and they are.

My ANC is back down to 0.6 and my Platelets are at 42. We're still waiting for the blood work to come back from Roche. We only have the blood work that was done at Hershey so far and it's not as in depth as Roches but it does tell us that I need to reduce the study drug.

I hope that we can get my levels to stop dropping before I need another blood transfusion.

The way that I feel this morning....it's not going to get any better anytime fast. The fatigue is horrible and my whole body is starting to hurt more and more. The evil little drummer boy has taken up strumming on my neck again.

This is like a replay of what happened a couple of months ago. Damn it, I wish we could have seen it coming. My blood levels where doing fine and then all of a sudden everything is going to hell again.

Now I have to fight to eat. I have to try to get food into my body so that I can get my body to raise my levels. Problem is that I seem to loose the fight way too often. It seems that the lower my levels drop the more I vomit. (gross I know) But I still try.

It also seems as though my mood is dropping right along with my blood levels. I feel like I could sit in the middle of the floor and cry. This is so very hard right now.

At least I now know why I wound up with the dollar bill sized bruise on my stomach from the Inerferon shot....My platelets have dropped. My blood is not clotting as well as it should. The bruise doesn't hurt, it just looks like hell. That's ok because I'm not planning to wear a bikini anytime soon...especially since I now look like an Ethiopian! lol

OK....enough whining for the day. I guess I'll spend the rest of the day waiting to hear from Hershey about Roches test and also there's the little fight that I have to go through with my Ins. company over the ant-nausea drug that Doc prescribed 90 pills for but the Ins. company only allowed 15 pills.

Amazing that my Ins. Company can dictate a prescription for me and over rule my Doctor! This will be a battle that will be good for me because I really need a distraction right now and a place to vent. God help whoever answers the phone at the Ins. Company!

I hope that this day gets better.......

Ducky has been spotted in MD. and Iris has been trying to send her my way.....

Wednesday, May 7, 2008

Day 87

Yesterday dragged. I hate working on slow days when I don't feel good...it just makes it that much longer. Although if it would have been too busy I probably wouldn't have been able to concentrate.

I felt like crap all day and then came home, ate and went to bed. It is getting to me. I just can't have a life anymore.

I hold onto the hope that I'll be so much better once I get rid of these trial drugs in 12 more weeks.

I'm still waiting to hear back from Hershey on my blood work. I should hear today....but if they don't call I'll call them. I have to take the Procrit shot tonight and I want to know if I'm keeping it at the same dosage.

This morning is a slow wake up morning. You would think I would feel better after 10 hours of sleep each night for the past how many nights, but still I wake up feeling like I could sleep another 3 or 4. There just is no energy.

I hate sounding down and I hate feeling sick. It's just not getting any better this week. It's frustrating.

Ducky Get your Ass Home!!!

Tuesday, May 6, 2008

Day 86

I'm very interested in knowing what my blood work shows from yesterday. I probably won't hear anything until later today or tomorrow. I'm willing to bet that something is off because I just can't seem to snap out of this funk.

I came home from Hershey yesterday and I missed my son's track meet. I just couldn't get the energy to go far from the couch. My beautiful Husband went in my absence. He's sweet and I know it meant so much to my son to see him there.

Hershey changed my anti-nausea med over to Zofran. It shouldn't make me drowsy. Problem is that the script is for taking 3 a day and the ins. company is only approving 15 pills per month for right now until the pharmacy has the Doctor get approval for a full 90 pills per month. There always has to be red tape! You would think that the 19 pounds that I've lost in the past 2 months would be reason enough for the script.....but oh no the Ins. company is an ass!

We're also splitting my shots up. I'll take the Procrit on Wed. nights. Half of the Nuepogen on Thurs. nights and the other half on Mon. nights. That's a shot on Wed., Thurs. Friday and Monday.....We hope that by spreading the drugs out the sides won't hit my body so hard. I hope it works. One thing that it should show me is which one causes me the most trouble.

We're also waiting for the blood work. They may lower my trial drug if the blood work comes back out of whack. At this point I'm hoping they do because it just seems like it's all too much. I feel like I keep falling.

Some how I have to start figuring out a way to gain some weight back. I started this little venture out at 139 pounds. Before I knew it I dropped to 135. Yesterday I weighed in at 121. I've gone from a size 7 to a 4 and now I feel more like a stick person than a woman. It sucks. I hope that the Zofran works and I hope that they get the script straightened out on it. I want to eat! I want to feel like I can eat! This sucks feeling nauseous all the time and it can't be helping my energy level at all!

Well anyway, I woke up this morning feeling a bit drained but I'm hopeful that the day will get better. I'm always hopeful.

Terry if you see Ducky out your way...could you send him home for a visit? ;)

Monday, May 5, 2008

Day 85

This was a ruff weekend. Started on Thursday and grew worst each day. I took my shot on Friday night and went to bed.

I spent Saturday hanging around the house with Athena and the baby while she cleaned. I knew I was feeling weak and achy but I thought it would pass. I tried to make it to the grocery store for Milk and few odd and ends...but yes... I came home without the milk and couldn't go anymore.

By the time I got back from the store I was really starting to feel it. I started running a slight fever and the chills kicked in along with the body aches and nausea. So that was it ...I was done. I went to bed early and woke up yesterday morning feeling like I had been beaten.

Yesterday was Sunday day 84.... One quarter of the way through tx and it beat me down. I spent the whole day on the couch sleeping on and off.

My wonderful Husband took up my slack and wrote a post for me in my blog. I just couldn't think straight enough to write.

This morning I'm waking up with a sore body and I feel like I've gone through hell, but I think whatever it was is passing now. I know Jimmy thinks that I over did it, but I think something was coming on since Thursday when I woke up in the morning vomiting.

I'll be interested in seeing my blood work from Hershey for today. Something is not right.

Ducky has defintley flown the coupe!

Sunday, May 4, 2008

Day 83-84

This is Jimmy posting for Laurie. Laurie isn't feeling well the past few days and has been unable to find the strength to post. Her being the toughie and stuborn person that I love, probally over did it the past few days. Yesterday, she played with a baby for several hours then decided to grocery shop, all after feeling like crap(I'll let her tell you how she forgot the one thing she really needed). Last night she was running a fever between 99 and 100 along with the deep bone aches. Today I will sit all 250lbs on her if she tries anything. I know she was looking foward to attending my grandmothers 95th birthday, but gram needs to give us at least another year so we can go next year. Tomorrow is Hersey and I am going to be a blabber mouth. This girl sometimes just doesn't listen

Friday, May 2, 2008

Day 82

Well yesterday stunk! No matter what I was nauseous all day long. I spent the day in the bathroom and by the end of the day I took a nausea pill, ate supper and went to bed.

This morning I woke up to having a hard time waking up. 10 hours of sleep and it just doesn't feel like enough. Maybe the day will get better.

We'll see.

Thursday, May 1, 2008

Day 81

Yesterday wasn't too bad. The morning was great but as the day went on, nausea started taking over a bit. By 4:30 I was vomiting. You just don't know what the day will bring from one hour to the next sometimes.

I came home, did the poker scores for the bar and tried to eat enough to take my handful of pills. After a nausea pill I had a bowl of cereal did my shots and went to bed at around 8:30.

Woke up this morning and here I am with that washed out feeling and queezy stomach.

Maybe it will get better....like I said, you never know from one hour to the next......