Did I say March 11th? Yes I did write that. I don't even know what month I'm in lol.
First shot = This Monday February 11th.
2 days from today.....yeehaw
Saturday, February 9, 2008
Wednesday, February 6, 2008
I called Sandy's number yesterday at around noon...she wasn't there and I left a message for her to call me back.
Finally last night she called.
February 11th at 11am I go to Hershey to start.
I asked about my biopsy but she said that she didn't have the report in her file. Doctor will have to fill me in on it when I go on Monday.
Not that it really matters, but she did have my viral count. It's pretty much the same as it was before.
So thats it...I have my start date.
Mondays....I don't exactly like the idea of having to take the shots on Mondays, but I don't have a choice.
My beautiful Husband came home from Denver in the wee hours of the morning. Even though I couldn't seem to get myself woken up enough to have a real conversation with him, just seeing him home made me feel so much better.
Finally last night she called.
February 11th at 11am I go to Hershey to start.
I asked about my biopsy but she said that she didn't have the report in her file. Doctor will have to fill me in on it when I go on Monday.
Not that it really matters, but she did have my viral count. It's pretty much the same as it was before.
So thats it...I have my start date.
Mondays....I don't exactly like the idea of having to take the shots on Mondays, but I don't have a choice.
My beautiful Husband came home from Denver in the wee hours of the morning. Even though I couldn't seem to get myself woken up enough to have a real conversation with him, just seeing him home made me feel so much better.
Sunday, February 3, 2008
Searching for answers
My roller coaster ride has put my brain into another search for more answers. Sometimes I wonder if I should search. Sometimes the searching leads to more questions. Sometimes the answers that I find are wrong and sometimes their right and I really don't know what to make of them.
For instance, is RO4588161 the same drug as R1626? I didn't think that it was, but then up pops someone who gave me this link:
http://www.maxygen.com/pdf/EASL_Roche_2006.pdf
"R1626/RO4588161".
So is RO4588161 the prodrug of R1626? I suppose it is.
So then the search went to figuring out what a "prodrug" actually is.
"A prodrug is a pharmacological substance (drug) which is administered in an inactive (or significantly less active) form. Once administered, the prodrug is metabolised in vivo into an active metabolite."
Translated to me means: It's a drug that changes into R1626 once inside the body.
There seems to be many reasons for making "prodrugs". Better obsorption in the body, less sides or less intensive sides to name just a couple. Sometimes a drug is just too much of a whamy to take all at once, so they slow down the
intake by making the drug one thing and having it slowly turn into something else once inside the body. It seems that if a drug like R1626 is not excepted in the body they had to find a way for it to be excepted. So they kind of "trick" the body like you would trying to get a child to take medicine by saying "no no honey it's not nasty tasting....it tastes good" or the way you'd get your pet to take a pill "Here ya go Fido, a nice piece of hamburger! You'll never know that the pill is wrapped up inside"
Your body excepts the Prodrug and once inside, it converts or changes into the regular drug (R1626?).
Ok, so why is this a Phase 2 drug and not at the same phase as R1626? Why do my consent forms say only 130 people have taken it?
My thought is that there's been change in the Prodrug part of it. It still becomes R1626 but how its delivered must have changed. (Holding the kids nose to pour the spoon full down didn't work so well, so how about we try putting it into a piece of candy?)
Oh who knows....not me. Most of this is just my guess or my compiling all the info from different corners of the world.
One concern, which in reality is something of a concern for even Standard Care treatment, is viral mutation or viral breakthrough. I didn't really understand what that was until I came across this article - http://www.medicinenet.com/hepatitis_c/page2.htm
"In addition, within a single host, there are minor genetic differences in the hepatitis C virus. These minor differences give rise to what are called quasispecies (quasi means resembling each other). Where do the quasispecies come from? Well, one of the non-structural hepatitis C virus proteins mentioned above is the enzyme polymerase. This enzyme is the machine that allows the virus to reproduce its genetic material (RNA) in order to multiply. Now, this RNA polymerase is very prone to making mistakes, resulting in changes (mutations) in the genetic material. The majority of these mutations result in a non-viable (not living) new quasispecies of hepatitis C virus, but sometimes the mutation results in viable quasispecies. With time, the accumulation of these viable mutations results in multiple quasispecies of the virus within the same host.
Why are there so many different varieties of hepatitis C virus anyway? Perhaps the different varieties confer an advantage to the survival of this virus over the years. For example, some of the new species may become more efficient in reproducing themselves (replication). By the same token, however, the genetic variability of hepatitis C virus has made the development of a protective vaccine against all of these genotypes and quasispecies a near impossible task with our present technology. Moreover, this variability probably also explains how this virus results in such a high rate of chronic infection. Thus, the genetic variability may enable the hepatitis C virus to avoid destruction by the host's cellular immune cells or antibodies, and so maintain (perpetuate) the chronic infection"
It seems that there are a number of factors that can cause this virus to mutate into a different genetic makeup. A fear with Polymerase Inhibitors (which RO4588161 is) is that the drug itself can irritate this Enzyme into producing a genetically changed "Super" Hep C cell that can avoid treatment and that will replicate itself throughout the body.
Smart little son of a bitch isn't it?
So far R1626 doesn't seem to have increased that risk yet. As far as I can see anyway. The risk is there....but weighing the risk against the gain? I'm not convinced to pull out of the trial.
Another risk that I have personally witnessed and I can't find much on is the idea that treatment could cause a type of immune system confussion. I traveled to Vermont to spend some time with my Sister-in-Law who underwent tx for Hep B years ago. (and by saying "years ago" I am praying that the medical advancement has progressed greatly since her treatment) While on treatment her immune system became confused as to what cells it should and should not be fighting. It turned against all cells with no descrimination, attacking her good cells right along with her Hep cells.
While she lives her life taking medication to control her immune system...her life is forever changed and painful at times.
Do I worry about this? Well in the back of my mind I do....but as I said, I'm counting on the statement of "years ago".
Look, no matter how we view any of this....I have Hep C and I want it gone. There is a certain and definate danger of living with it. I almost shit when my GI said "Your liver is doing good so far....you might have another 10 years before you're in real trouble." 10 years! I'm 42 f 'n years old! He was trying to make it into a possitive....sometimes I wish people would just shut the hell up.
No matter how you view this, standard tx also has it's dangers. A trial drug always has it's unknown dangers added to that list, I know, but since I'm here and theres a chance that this trial drug could increase my chance of clearing the virus...I'll step into the chance....risks and all.
Now if Sandy would just call.....lol.
Mentally I'm still in line. Anger, frustration and fear take more of my emotions than I'd like them too, but strength holds them back.
I have friends who have or are going through treatment and the path that they have paved gives me incouragement to hold onto my strength.
The love of my Husband forges me forward.
In my search to provide me with the knowledge that I feel I need to make a life altering decision like 48 weeks of chemo, to trial or not to trial, ect., I've come to learn 2 major realities of pre-tx and tx itself.
1. Hep C is a sneaky diabolical little bastard of a dragon that is Not very well understood by the general Medical field. Even "specialist's" have yet to fully understand it. Society is completely ignorant to it and education about it is non-existant in my area. It's a demon hiding in the shadows and the tales that are told about it in my community seem more like folklore than educated statements. (Can I get Hep C by drinking out of someones glass or sitting on the toilet?)
damn it!
2. Everything that I read may or may not pertain to my outcome.
One friend has side effects so hard that getting out of bed in the morning is a chore in itself. Yet another friend only has a rash and loss of hair volume. My sister-in-law has an auto-immune desease. But yet another friend has undergone 72 weeks of the "poison" called tx and she's not only virus free and beginning to find her life again...she's healthy. Still another friend has some bad days and some"groovy" days. One more friend has gone through tx 3 times....and failed all 3.
If you're searching the net looking for what you are faced with by going into tx, you will not find your answer. It truly does depend on you and how your body reacts to it. You won't find your answers here, because here is not where those answers lay.
That knowledge has turned into my frustration, anger and the feeling of being lost while sitting in this limbo waiting for the phone call.
The call will come soon. Or I will call.
The first shot, first pill will come soon enough....all of this will become only a memory in my past.
For right now I continue to wait...
For instance, is RO4588161 the same drug as R1626? I didn't think that it was, but then up pops someone who gave me this link:
http://www.maxygen.com/pdf/EASL_Roche_2006.pdf
"R1626/RO4588161".
So is RO4588161 the prodrug of R1626? I suppose it is.
So then the search went to figuring out what a "prodrug" actually is.
"A prodrug is a pharmacological substance (drug) which is administered in an inactive (or significantly less active) form. Once administered, the prodrug is metabolised in vivo into an active metabolite."
Translated to me means: It's a drug that changes into R1626 once inside the body.
There seems to be many reasons for making "prodrugs". Better obsorption in the body, less sides or less intensive sides to name just a couple. Sometimes a drug is just too much of a whamy to take all at once, so they slow down the
intake by making the drug one thing and having it slowly turn into something else once inside the body. It seems that if a drug like R1626 is not excepted in the body they had to find a way for it to be excepted. So they kind of "trick" the body like you would trying to get a child to take medicine by saying "no no honey it's not nasty tasting....it tastes good" or the way you'd get your pet to take a pill "Here ya go Fido, a nice piece of hamburger! You'll never know that the pill is wrapped up inside"Your body excepts the Prodrug and once inside, it converts or changes into the regular drug (R1626?).
Ok, so why is this a Phase 2 drug and not at the same phase as R1626? Why do my consent forms say only 130 people have taken it?
My thought is that there's been change in the Prodrug part of it. It still becomes R1626 but how its delivered must have changed. (Holding the kids nose to pour the spoon full down didn't work so well, so how about we try putting it into a piece of candy?)
Oh who knows....not me. Most of this is just my guess or my compiling all the info from different corners of the world.
One concern, which in reality is something of a concern for even Standard Care treatment, is viral mutation or viral breakthrough. I didn't really understand what that was until I came across this article - http://www.medicinenet.com/hepatitis_c/page2.htm
"In addition, within a single host, there are minor genetic differences in the hepatitis C virus. These minor differences give rise to what are called quasispecies (quasi means resembling each other). Where do the quasispecies come from? Well, one of the non-structural hepatitis C virus proteins mentioned above is the enzyme polymerase. This enzyme is the machine that allows the virus to reproduce its genetic material (RNA) in order to multiply. Now, this RNA polymerase is very prone to making mistakes, resulting in changes (mutations) in the genetic material. The majority of these mutations result in a non-viable (not living) new quasispecies of hepatitis C virus, but sometimes the mutation results in viable quasispecies. With time, the accumulation of these viable mutations results in multiple quasispecies of the virus within the same host.
Why are there so many different varieties of hepatitis C virus anyway? Perhaps the different varieties confer an advantage to the survival of this virus over the years. For example, some of the new species may become more efficient in reproducing themselves (replication). By the same token, however, the genetic variability of hepatitis C virus has made the development of a protective vaccine against all of these genotypes and quasispecies a near impossible task with our present technology. Moreover, this variability probably also explains how this virus results in such a high rate of chronic infection. Thus, the genetic variability may enable the hepatitis C virus to avoid destruction by the host's cellular immune cells or antibodies, and so maintain (perpetuate) the chronic infection"
It seems that there are a number of factors that can cause this virus to mutate into a different genetic makeup. A fear with Polymerase Inhibitors (which RO4588161 is) is that the drug itself can irritate this Enzyme into producing a genetically changed "Super" Hep C cell that can avoid treatment and that will replicate itself throughout the body.
Smart little son of a bitch isn't it?
So far R1626 doesn't seem to have increased that risk yet. As far as I can see anyway. The risk is there....but weighing the risk against the gain? I'm not convinced to pull out of the trial.
Another risk that I have personally witnessed and I can't find much on is the idea that treatment could cause a type of immune system confussion. I traveled to Vermont to spend some time with my Sister-in-Law who underwent tx for Hep B years ago. (and by saying "years ago" I am praying that the medical advancement has progressed greatly since her treatment) While on treatment her immune system became confused as to what cells it should and should not be fighting. It turned against all cells with no descrimination, attacking her good cells right along with her Hep cells.
While she lives her life taking medication to control her immune system...her life is forever changed and painful at times.
Do I worry about this? Well in the back of my mind I do....but as I said, I'm counting on the statement of "years ago".
Look, no matter how we view any of this....I have Hep C and I want it gone. There is a certain and definate danger of living with it. I almost shit when my GI said "Your liver is doing good so far....you might have another 10 years before you're in real trouble." 10 years! I'm 42 f 'n years old! He was trying to make it into a possitive....sometimes I wish people would just shut the hell up.
No matter how you view this, standard tx also has it's dangers. A trial drug always has it's unknown dangers added to that list, I know, but since I'm here and theres a chance that this trial drug could increase my chance of clearing the virus...I'll step into the chance....risks and all.
Now if Sandy would just call.....lol.
Mentally I'm still in line. Anger, frustration and fear take more of my emotions than I'd like them too, but strength holds them back.
I have friends who have or are going through treatment and the path that they have paved gives me incouragement to hold onto my strength.
The love of my Husband forges me forward.
In my search to provide me with the knowledge that I feel I need to make a life altering decision like 48 weeks of chemo, to trial or not to trial, ect., I've come to learn 2 major realities of pre-tx and tx itself.
1. Hep C is a sneaky diabolical little bastard of a dragon that is Not very well understood by the general Medical field. Even "specialist's" have yet to fully understand it. Society is completely ignorant to it and education about it is non-existant in my area. It's a demon hiding in the shadows and the tales that are told about it in my community seem more like folklore than educated statements. (Can I get Hep C by drinking out of someones glass or sitting on the toilet?)
damn it!
2. Everything that I read may or may not pertain to my outcome.
One friend has side effects so hard that getting out of bed in the morning is a chore in itself. Yet another friend only has a rash and loss of hair volume. My sister-in-law has an auto-immune desease. But yet another friend has undergone 72 weeks of the "poison" called tx and she's not only virus free and beginning to find her life again...she's healthy. Still another friend has some bad days and some"groovy" days. One more friend has gone through tx 3 times....and failed all 3.
If you're searching the net looking for what you are faced with by going into tx, you will not find your answer. It truly does depend on you and how your body reacts to it. You won't find your answers here, because here is not where those answers lay.
That knowledge has turned into my frustration, anger and the feeling of being lost while sitting in this limbo waiting for the phone call.
The call will come soon. Or I will call.
The first shot, first pill will come soon enough....all of this will become only a memory in my past.
For right now I continue to wait...
Oh and by the way - GO N.E.!!!!!!!!!
Friday, February 1, 2008
Ever get to the point that you just don't want to talk about it? I mean whats the point.
I was feeling good for a bunch of days there, but lo and behold I feel like shit again.
Right about now I want to hit the wall.....or sit on the floor and cry....but it will do me no good. I won't feel any better and the nurse won't call with a start date. And by the way if she does call....it probably isn't going to be the date that I had hoped for. Calling her? Well there's a scary thought isn't it? Yeah I'd call her but Jimmy will be away from Sat. through Tuesday night and I do not want her to say come in on Monday or Tuesday. I don't want to go it alone. (my fault...sending him to Denver is my valentine present to him and he very much needs a break away from reality (Bar stress and me stress). Tickets are bought and where bought when we thought I'd be starting later or much earlier than the 4th and 5th)
Note to anyone looking at starting treatment: Don't make plans! Don't think and don't expect anything to happen when you think it will....You Will Be Disapointed!
No I'm not sitting here crying in my beer....lol....I can't have a beer.
And no I don't need a slap in the face to snap me out of it....right about now I'd probably slap back.
What I need is to get this F'n thing over with!
I was feeling good for a bunch of days there, but lo and behold I feel like shit again.
Right about now I want to hit the wall.....or sit on the floor and cry....but it will do me no good. I won't feel any better and the nurse won't call with a start date. And by the way if she does call....it probably isn't going to be the date that I had hoped for. Calling her? Well there's a scary thought isn't it? Yeah I'd call her but Jimmy will be away from Sat. through Tuesday night and I do not want her to say come in on Monday or Tuesday. I don't want to go it alone. (my fault...sending him to Denver is my valentine present to him and he very much needs a break away from reality (Bar stress and me stress). Tickets are bought and where bought when we thought I'd be starting later or much earlier than the 4th and 5th)
Note to anyone looking at starting treatment: Don't make plans! Don't think and don't expect anything to happen when you think it will....You Will Be Disapointed!
No I'm not sitting here crying in my beer....lol....I can't have a beer.
And no I don't need a slap in the face to snap me out of it....right about now I'd probably slap back.
What I need is to get this F'n thing over with!
Saturday, January 26, 2008
I Feel good! nana nana nana na
Well now, it's Saturday and the week is over.
For the past few day's I feel really good! My little dragon has been giving me a break now for almost a full week! (knock on wood) Instead of fatigue I've found the normal tiredness at the end of the day....I've actually been able to eat half assed.
Last night Jimmy and I went to dinner at a local fine cuisine restaurant up the street from us called Martins. Awesome food! I had lightly smoked fish layered with bacon and sliced apple and a sauce that is out of this world! I wasn't sure I would like it. It sounded somewhat strange due to the apples....but it was scrumptious! I couldn't help but to eat it all. lol, that's a big deal for me!
I want these good days to last. I'm hoping that they do so that Jimmy and I can enjoy some "good" time together before tx begins. Even if tx is nice to me....I still want us to know "normal" before tx starts.
Who knows, maybe it's my will to have those good days that's battling the dragon into submission. That would be a nice thought if it where possible.
My Mother and I have a date every Thursday night now to go online and talk through Yahoo IM's. It's a nice way to stay in touch in between phone calls. We've kept our date for 2 weeks now and our IM's have added some peace to my mind. Her support is something that no one else in this world could give to me. It's nice to be a daughter again.
Debbie's getting Married in the beginning of February. Still I haven't heard from her. I'm thinking I won't and with everything that's going on I'm thankful for that. I just don't have it in me to give even a little bit. And to be honest I don't want to.
Her marriage reminds of another reason for why I feel that way. See, she was one of my bridesmaids when Jimmy and I got married. My Maid-of-Honor was my best friend. It wasn't too long ago, that my best friend told me why Debbie is not one of her favorite people. It seems that when Debbie traveled up for my wedding she told my Maid-of-Honor that she didn't come all the way up here for my wedding "Hell it's not like Laurie hasn't been married before" she said that she came up here to meet JJ (a friend of Jimmy's and mine who had been chatting with her online for a long time). I know it's true. I had ignored her downing most of a bottle of Jim Beam before walking with me down the Isle and then her acting like an ass throughout the wedding night because I just thought that she was blowing off steam at the time due to her every day life stress. But looking back....and hearing the stories about her from friends...it all adds up. It was my wedding and nothing or no one could touch the happiness that I was in. So I ignored her craziness. But looking back ...it all comes together into a full picture and I suppose I feel a little like a fool for believing that after all of these years my sister and I would have a "real" sister relationship.
But enough with that rambling....lol. Life goes on and right now the going is good.
I'm hoping that Sandy, the research nurse, will call early in the week next week with my start date. I want to know what my liver biopsy showed and I'm very interested in knowing what my viral load is now (from the blood work a couple of weeks ago).
Seems like everybody has a different opinion on viral counts. Some say that it could go up and down without treatment....some say it only either stays the same or goes up without treatment. They also say it doesn't matter what the count is before treatment, it only matters that tx makes it drop.
Something about it makes me think that it should matter. If it dropped without treatment, in my mind I think that tx should send it spiralling down. On the other hand, if it's higher now, doesn't it mean that I now have more of it to kill? And, if it's the same as 11 months ago, isn't it just holding steady? Viral loads must mean something more than being a measurement for how tx is progressing.
So many questions....and so many different answers from so many different corners of the world. I start to get the idea that really no one knows for sure what the answers are.
Anyway, these are the thoughts and ramblings of a woman tortured by waiting...lol...what do ya expect! :)
Goto go get ready to open the bar.
Tune in next time for the ramblings of Laurie...lol ;)
Life is good.
Jimmy and our San Diego sunset a year ago. We ran up and down that beach collecting sand dollars and exploring the wildlife caught in the pools of the rock (boulder) ledges. We spent hours playing and adventuring on this beach. I'd love to go back one day.
For the past few day's I feel really good! My little dragon has been giving me a break now for almost a full week! (knock on wood) Instead of fatigue I've found the normal tiredness at the end of the day....I've actually been able to eat half assed.
Last night Jimmy and I went to dinner at a local fine cuisine restaurant up the street from us called Martins. Awesome food! I had lightly smoked fish layered with bacon and sliced apple and a sauce that is out of this world! I wasn't sure I would like it. It sounded somewhat strange due to the apples....but it was scrumptious! I couldn't help but to eat it all. lol, that's a big deal for me!
I want these good days to last. I'm hoping that they do so that Jimmy and I can enjoy some "good" time together before tx begins. Even if tx is nice to me....I still want us to know "normal" before tx starts.
Who knows, maybe it's my will to have those good days that's battling the dragon into submission. That would be a nice thought if it where possible.
My Mother and I have a date every Thursday night now to go online and talk through Yahoo IM's. It's a nice way to stay in touch in between phone calls. We've kept our date for 2 weeks now and our IM's have added some peace to my mind. Her support is something that no one else in this world could give to me. It's nice to be a daughter again.
Debbie's getting Married in the beginning of February. Still I haven't heard from her. I'm thinking I won't and with everything that's going on I'm thankful for that. I just don't have it in me to give even a little bit. And to be honest I don't want to.
Her marriage reminds of another reason for why I feel that way. See, she was one of my bridesmaids when Jimmy and I got married. My Maid-of-Honor was my best friend. It wasn't too long ago, that my best friend told me why Debbie is not one of her favorite people. It seems that when Debbie traveled up for my wedding she told my Maid-of-Honor that she didn't come all the way up here for my wedding "Hell it's not like Laurie hasn't been married before" she said that she came up here to meet JJ (a friend of Jimmy's and mine who had been chatting with her online for a long time). I know it's true. I had ignored her downing most of a bottle of Jim Beam before walking with me down the Isle and then her acting like an ass throughout the wedding night because I just thought that she was blowing off steam at the time due to her every day life stress. But looking back....and hearing the stories about her from friends...it all adds up. It was my wedding and nothing or no one could touch the happiness that I was in. So I ignored her craziness. But looking back ...it all comes together into a full picture and I suppose I feel a little like a fool for believing that after all of these years my sister and I would have a "real" sister relationship.
But enough with that rambling....lol. Life goes on and right now the going is good.
I'm hoping that Sandy, the research nurse, will call early in the week next week with my start date. I want to know what my liver biopsy showed and I'm very interested in knowing what my viral load is now (from the blood work a couple of weeks ago).
Seems like everybody has a different opinion on viral counts. Some say that it could go up and down without treatment....some say it only either stays the same or goes up without treatment. They also say it doesn't matter what the count is before treatment, it only matters that tx makes it drop.
Something about it makes me think that it should matter. If it dropped without treatment, in my mind I think that tx should send it spiralling down. On the other hand, if it's higher now, doesn't it mean that I now have more of it to kill? And, if it's the same as 11 months ago, isn't it just holding steady? Viral loads must mean something more than being a measurement for how tx is progressing.
So many questions....and so many different answers from so many different corners of the world. I start to get the idea that really no one knows for sure what the answers are.
Anyway, these are the thoughts and ramblings of a woman tortured by waiting...lol...what do ya expect! :)
Goto go get ready to open the bar.
Tune in next time for the ramblings of Laurie...lol ;)
Life is good.
Jimmy and our San Diego sunset a year ago. We ran up and down that beach collecting sand dollars and exploring the wildlife caught in the pools of the rock (boulder) ledges. We spent hours playing and adventuring on this beach. I'd love to go back one day.
Wednesday, January 23, 2008
Biopsy - done
The liver Biopsy is done.
We got back kind of late last night and they put me to sleep with Demerol and something else that knocked me on my ass so by the time that we got home, typing was not on my list of things to do. lol....sleep was.
I feel groggy waking up this morning and other than a sore spot on my side it was no problem.
I'm not a big baby when it comes to pain...all 3 kids where born naturally and I've had a needle biopsy on an ovary (no meds...hurt like hell) and 2 on my breast and I've gone through heart surgery that they had to keep me painfully awake for. But I do have to tell you that if given the choice...I'd choose "knock me out" any time. She didn't give me a choice....She knocked me out.
The blood work shows everything's ok, accept my Alt levels are still high and now my protein levels are low. We're guessing that my protein levels are low because of the nausea that I get from the fatigue. I guess I'll have to try to find food that is higher in protein other than chicken and salads. I did try to eat a hamburger on the way back home last night...stupid big mistake...hamburgers are out.
As for the Alt levels...well we'll be dealing with that soon enough.
I know they did another viral count but it wasn't in my file last night. I'll have to get that report from the research nurse. I don't expect the count to be any lower then when they tested it the last time and I don't think Dr. Smith thinks it will be either.
As for the biopsy, Dr. Smith said that the sample looked like "a little inch worm" and it held together well. She said that when there is cirrhosis the sample usually breaks or falls apart easily. Mine didn't so that's a good sign.
We won't know anything more for 7 to 10 days. And then that's it....I start treatment.
I'm just around the corner from the start line.
She asked me yesterday if I was excited to get started. I told her "more like anxious" but I can imagine that she's excited. Waiting to start a new research must be a real highlight for her and her staff.
Oh and by the way, It's Tylenol for me and not Ibuprofen. Good job everybody!
As for AD's, she thinks I should wait until I need them. I kind of think that too.
I have to keep in mind that this is a study drug and that one of the biggest parts of this study is to evaluate the side effects. She didn't tell me that, but my own common sense does. I was on AD's only once in my life (not counting the Xanax that I have to take everyonce in a blue moon for stress). It was something like Lipator (sp?) and it didn't do anything except give me strange dreams.
I know I'll probably change my mind later down the road, but for now I just feel more comfortable with not taking anything more than I have to. I just really hate taking drugs.
So...for now all is well.
We got back kind of late last night and they put me to sleep with Demerol and something else that knocked me on my ass so by the time that we got home, typing was not on my list of things to do. lol....sleep was.
I feel groggy waking up this morning and other than a sore spot on my side it was no problem.
I'm not a big baby when it comes to pain...all 3 kids where born naturally and I've had a needle biopsy on an ovary (no meds...hurt like hell) and 2 on my breast and I've gone through heart surgery that they had to keep me painfully awake for. But I do have to tell you that if given the choice...I'd choose "knock me out" any time. She didn't give me a choice....She knocked me out.
The blood work shows everything's ok, accept my Alt levels are still high and now my protein levels are low. We're guessing that my protein levels are low because of the nausea that I get from the fatigue. I guess I'll have to try to find food that is higher in protein other than chicken and salads. I did try to eat a hamburger on the way back home last night...stupid big mistake...hamburgers are out.
As for the Alt levels...well we'll be dealing with that soon enough.
I know they did another viral count but it wasn't in my file last night. I'll have to get that report from the research nurse. I don't expect the count to be any lower then when they tested it the last time and I don't think Dr. Smith thinks it will be either.
As for the biopsy, Dr. Smith said that the sample looked like "a little inch worm" and it held together well. She said that when there is cirrhosis the sample usually breaks or falls apart easily. Mine didn't so that's a good sign.
We won't know anything more for 7 to 10 days. And then that's it....I start treatment.
I'm just around the corner from the start line.
She asked me yesterday if I was excited to get started. I told her "more like anxious" but I can imagine that she's excited. Waiting to start a new research must be a real highlight for her and her staff.
Oh and by the way, It's Tylenol for me and not Ibuprofen. Good job everybody!
As for AD's, she thinks I should wait until I need them. I kind of think that too.
I have to keep in mind that this is a study drug and that one of the biggest parts of this study is to evaluate the side effects. She didn't tell me that, but my own common sense does. I was on AD's only once in my life (not counting the Xanax that I have to take everyonce in a blue moon for stress). It was something like Lipator (sp?) and it didn't do anything except give me strange dreams.
I know I'll probably change my mind later down the road, but for now I just feel more comfortable with not taking anything more than I have to. I just really hate taking drugs.
So...for now all is well.
Sunday, January 20, 2008
Ok, so I pretend not to think about it but I am. Stay's in the back of mind all of the time. How could it not?
This stupid little dragon.
Recently, questions have been popping up in my head more often.
For instance, Anti Depressents...if started before hand what could they really do? I'm not depressed....sure I have anxiety, hell who wouldn't at this point. That just wouldn't be human. But If I am anxious won't A.D.'s cause more? It's on my list to ask the Doc.
And there's the question of the Liver Biopsy seeming to be not so high on the priority list for tx. It's important, I understand that, but I get the impression that people elsewhere determine to treat or not to treat depending on it's outcome and how much damage has been done to the liver.
It seems to me that the biopsy is being used only to rule out tx. If my liver damage is too great then they may pull tx off of the table. This train of thought hasn't come from the study.....it's come way before I knew about the study....even before going to Hershey. So why does it seem as though to treat of not to treat is based on the Biopsy everywhere else but in my area.
Then there's Ibuprofen versa Tylenol....I could go back and forth with that one all day long! Everyone seems to have a different opinion on it.
Since I told my Doc that I take Ibuprofen for pain and she did not object....I guess I'll go with that until she changes it. I have to rely on her opinion simply because she is a Hep C specialist.
Oh there are loads of questions rolling around in this little brain of mine. I go to Hershey in 2 days (yes U.C. I'm still counting...somehow it makes me feel better), I'll ask some of my questions then....some questions can't be answered.
I still haven't found a name local brand for Guarana yet, so if anybody knows of one that I can find locally or in the U.S. online (U.S. online because my credit card has already been stolen twice and I would like to lesson the likelyhood), please drop me the name.....there are days that I could really use it.
So that's about it...I'm doing good, I'm a little nervious about the biopsy itself but I'm taking it in stride. I'm pretty nervious about tx but who wouldn't be...it's just too much of the unknown. It'll come soon enough and the unknown part will finally be over with. I deal with it.
Got to go make Jimmy Grits! lol He fell in love with them when we went to Florida! Go figure - a Northener who loves grits!
Enjoy the day.
This stupid little dragon.
Recently, questions have been popping up in my head more often.
For instance, Anti Depressents...if started before hand what could they really do? I'm not depressed....sure I have anxiety, hell who wouldn't at this point. That just wouldn't be human. But If I am anxious won't A.D.'s cause more? It's on my list to ask the Doc.
And there's the question of the Liver Biopsy seeming to be not so high on the priority list for tx. It's important, I understand that, but I get the impression that people elsewhere determine to treat or not to treat depending on it's outcome and how much damage has been done to the liver.
It seems to me that the biopsy is being used only to rule out tx. If my liver damage is too great then they may pull tx off of the table. This train of thought hasn't come from the study.....it's come way before I knew about the study....even before going to Hershey. So why does it seem as though to treat of not to treat is based on the Biopsy everywhere else but in my area.
Then there's Ibuprofen versa Tylenol....I could go back and forth with that one all day long! Everyone seems to have a different opinion on it.
Since I told my Doc that I take Ibuprofen for pain and she did not object....I guess I'll go with that until she changes it. I have to rely on her opinion simply because she is a Hep C specialist.
Oh there are loads of questions rolling around in this little brain of mine. I go to Hershey in 2 days (yes U.C. I'm still counting...somehow it makes me feel better), I'll ask some of my questions then....some questions can't be answered.
I still haven't found a name local brand for Guarana yet, so if anybody knows of one that I can find locally or in the U.S. online (U.S. online because my credit card has already been stolen twice and I would like to lesson the likelyhood), please drop me the name.....there are days that I could really use it.
So that's about it...I'm doing good, I'm a little nervious about the biopsy itself but I'm taking it in stride. I'm pretty nervious about tx but who wouldn't be...it's just too much of the unknown. It'll come soon enough and the unknown part will finally be over with. I deal with it.
Got to go make Jimmy Grits! lol He fell in love with them when we went to Florida! Go figure - a Northener who loves grits!
Enjoy the day.
Thursday, January 17, 2008
It's days like this that I want to stay in bed!
Maybe Teah and Magda are right....maybe I'll feel better on treatment because this morning it just couldn't be any worse. or could I....wouldn't that stink?
It's weird how this works, I feel half assed ok for days on end then bang it jumps up and makes me feel so horrible.
I woke up but I don't feel like I slept. Hell I don't even feel like I'm waking up all the way and I've been up for an hour. My upper back is killing me and I'm going to take Ibprofen even though they say to stay away from it.
I'll down a cup of coffee with the Ibprofen and I know it will make me nauseaus. So then I'll wake up and my back will let up a little, but I trade it for nausea... go figure.
Anyone know where I can buy Guarana? Will that make me nauseaus? I'd like to try it anyway. I can't seem to find it locally. Maybe there's a name brand that I could look for?
Yep.....whaaaaa.....
Time to find the "stupid" smile, brush my hair, stop my whining and go to work. I'll fight through the day to find the reward of coming home and going to bed.
Hi Ho , Hi Ho....
Maybe Teah and Magda are right....maybe I'll feel better on treatment because this morning it just couldn't be any worse. or could I....wouldn't that stink?
It's weird how this works, I feel half assed ok for days on end then bang it jumps up and makes me feel so horrible.
I woke up but I don't feel like I slept. Hell I don't even feel like I'm waking up all the way and I've been up for an hour. My upper back is killing me and I'm going to take Ibprofen even though they say to stay away from it.
I'll down a cup of coffee with the Ibprofen and I know it will make me nauseaus. So then I'll wake up and my back will let up a little, but I trade it for nausea... go figure.
Anyone know where I can buy Guarana? Will that make me nauseaus? I'd like to try it anyway. I can't seem to find it locally. Maybe there's a name brand that I could look for?
Yep.....whaaaaa.....
Time to find the "stupid" smile, brush my hair, stop my whining and go to work. I'll fight through the day to find the reward of coming home and going to bed.
Hi Ho , Hi Ho....
Monday, January 14, 2008
Biopsy = Jan 22nd
I talked to Sandy today. She scheduled my Liver Biopsy for Jan.22nd.
She also said that she's figuring I'll be starting treatment sometime around February 4th.
That would make me done right around New Years next year.
It's what I've been waiting for. It's a strange feeling to be waiting for something that is going to both help you and make you sick all at the same time. It's almost as though the anticipation has a split personality. On one side is strength standing up and saying "I'm ready, let's get down to it". On the other side is fear shying away from the thought of that first shot.
All and all, I am ok.
She also said that she's figuring I'll be starting treatment sometime around February 4th.
That would make me done right around New Years next year.
It's what I've been waiting for. It's a strange feeling to be waiting for something that is going to both help you and make you sick all at the same time. It's almost as though the anticipation has a split personality. On one side is strength standing up and saying "I'm ready, let's get down to it". On the other side is fear shying away from the thought of that first shot.
All and all, I am ok.
Sunday, January 13, 2008
30 days to go....
It's kind of strange the way this whole story plays out into a counting game. 30 days to go before the time clock runs out on my screened period. They have to have me started on treatment within the 35 day time period and there are 30 days left.
While I've been sitting here waiting for an agonizingly long time, I seemed to have lost the concept of 30 days.
Let's see....30 days...it's a month...4 weeks.
4 weeks!....lol...that feels better and scarier all at the same time! So we'll just stick with 30 days for now. :-)
While I had decided earlier on not to tell my Mother about this little dragon, my dear sweet husband found a way around my wishes and did what he felt was right....he included my Mother in on a Christmas News Letter that he writes every year for family near and far. In the news letter he wrote about this little journey we're on. I have to admit that I knew he put it in the Christmas card, I guess I wanted her to know....I just couldn't stand the thought of the same thing happening with her that happened with Debbie. I have nothing more left, mentally, to afford loosing.
After an angry letter from her, due to the way she found out, I emailed her my honest explanation and my love. Yesterday we spoke on the phone for a very long time and I found my Mom again.
No matter how old we get....no matter what happens in our lives or how far apart we get, the love that I have for my Mom is always un-dieing.
Jimmy did the right thing....I need my Mother and all of her support. The little girl in me would not be able to make it through all of this without her. The woman would always survive ....but in doing so I would have forever made myself an orphan.
I do have one lesson in all of this to learn, I have to learn how to be Daughter.
That must sound strange but for more than two-thirds of my life I have not had the privilege of being a daughter. So many people take that for granted. Bad day at work "I'm going to call my Mom".....Daughter turns 18 or is graduating "I gotta call Mom"....Problems at home or with kids "I'm going to call Mom".
Or how about you just simply need to hear that voice....her voice....and she needs to hear yours.
Way back in the back of my mind, through all of cob webs....hiding in the shadows is the little girl that I once was.
When I hear my Mom's voice...that little girl is not alone anymore.
I don't know....maybe it's hard to understand....
The weekend has been nice. Yesterday went back and forth with being tired but not fatigued. I'm working on putting back some of the 9 pounds that I lost by eating whatever I can stick in mouth that won't make me nauseous or more tired.
Lately I found Oreo cookies....lol. Hey if they don't make me sick right now I'll eat them by the hand fulls!
Jimmy and I got the Christmas tree and decorations put away. And my plotter is set back up but not reinstalled yet. (one thing at a time)
The house is a mess....but hey it'll survive. Between the both of us, we'll do a little here and there as we go. It always works out in the end.
Back to waiting for Hershey's call.
Enjoy the day!
While I've been sitting here waiting for an agonizingly long time, I seemed to have lost the concept of 30 days.
Let's see....30 days...it's a month...4 weeks.
4 weeks!....lol...that feels better and scarier all at the same time! So we'll just stick with 30 days for now. :-)
While I had decided earlier on not to tell my Mother about this little dragon, my dear sweet husband found a way around my wishes and did what he felt was right....he included my Mother in on a Christmas News Letter that he writes every year for family near and far. In the news letter he wrote about this little journey we're on. I have to admit that I knew he put it in the Christmas card, I guess I wanted her to know....I just couldn't stand the thought of the same thing happening with her that happened with Debbie. I have nothing more left, mentally, to afford loosing.
After an angry letter from her, due to the way she found out, I emailed her my honest explanation and my love. Yesterday we spoke on the phone for a very long time and I found my Mom again.
No matter how old we get....no matter what happens in our lives or how far apart we get, the love that I have for my Mom is always un-dieing.
Jimmy did the right thing....I need my Mother and all of her support. The little girl in me would not be able to make it through all of this without her. The woman would always survive ....but in doing so I would have forever made myself an orphan.
I do have one lesson in all of this to learn, I have to learn how to be Daughter.
That must sound strange but for more than two-thirds of my life I have not had the privilege of being a daughter. So many people take that for granted. Bad day at work "I'm going to call my Mom".....Daughter turns 18 or is graduating "I gotta call Mom"....Problems at home or with kids "I'm going to call Mom".
Or how about you just simply need to hear that voice....her voice....and she needs to hear yours.
Way back in the back of my mind, through all of cob webs....hiding in the shadows is the little girl that I once was.
When I hear my Mom's voice...that little girl is not alone anymore.
I don't know....maybe it's hard to understand....
The weekend has been nice. Yesterday went back and forth with being tired but not fatigued. I'm working on putting back some of the 9 pounds that I lost by eating whatever I can stick in mouth that won't make me nauseous or more tired.
Lately I found Oreo cookies....lol. Hey if they don't make me sick right now I'll eat them by the hand fulls!
Jimmy and I got the Christmas tree and decorations put away. And my plotter is set back up but not reinstalled yet. (one thing at a time)
The house is a mess....but hey it'll survive. Between the both of us, we'll do a little here and there as we go. It always works out in the end.
Back to waiting for Hershey's call.
Enjoy the day!
Tuesday, January 8, 2008
Lucy I'm Home!
It was a beautiful day for a ride.
All and all it was a pretty good day. Lots of info. Consent forms to sign. Lots of checking this and that and LOTS of blood drawn.
I'm kind of glad that they weighed me before they took my blood because by the time that they filled all of those vials I think I had to weigh about 2 lbs. lighter :-) As it is I lost 9 lbs. in the past month. Keeping my weight is a challenge that I'm going to have to work harder on.
I do have a better grasp on the treatment time line and a better understanding of what is to come.
Today was a day of screening. In about 2 weeks, as soon as my blood work comes back, I go for the Liver biopsy. After about another week I go back to start treatment.That is if, of course, the blood work and liver biopsy come back as planned and I am put into this study.(which I would say at this point my chances are very good.)
The trial drug is RO4588161. It's describe like this:
"HCV polymerase is an enzyme necessary for the hepatitus C virus to make copies of itself. There are currently no approved HCV polymerase inhibitors but there are simular types of drugs used in treating Hepatitus B virus and HIV. RO1048297 is a strong inhibitor of the polymerase enzyme. The study drug RO4588161(which I'll be taking) is the prodrug of RO1048297 which means, RO4588161 rapidly converts to RO1048297 inside the body." say's the paper that I have in my hand right now from my Doctors visit.
If you're anything like me, you'd convert all of that to say "Bla Bla Bla Bla". Because thats the way it sounded in my head. Except for the "Oh...Ok...I can follow that! I don't know what the hell it means.....but alrighty then". lol
Sandy, who is a pretty cool nurse and who I enjoyed having as a teacher today, put it like this: There are pretty much 2 kinds of drugs being worked on right now through research. One is a drug that will go into the viral cell and try to attack it from within. The second is a drug that attaches itself to the outer shell of the viral cell. It then tries to attack the shell to expose the cell, causing the cell to die.
This Prodrug is the later of the 2.
Now this I understand without the bla bla bla -
We're going to try to skin the dragon. :~}
This is a Phase II trial that will include approximately 490 people internationally with Geno type 1.
There have been about 130 people given this drug in a previous research study(s). (Which, by the way, sort of surpised the hell out of me. LOL....I don't really know why it surprised me, but it did.).....Anyway, this is the 6th clinical study with this drug. I assume that with only 130 before me and it being called a phaes II drug, that only 1 study was administered to Humans.
The most commonly seen side effects where:
*Flu-like symptoms such as fever, chills, muscle aches, body weakness, joint pain and headaches
*Upset stomache (nausea, diarrhea and vomiting)
*Decrease in white blood cells, red blood cells and platelets
*Insomnia
*irritability (oh boy!!)
*infections
*rash
Now lets combine that with the side effects of the Pegasys and Copegus side effects:
*Flu like symptoms (same as above)
*Extreme Fatigue (got that....gonna get worse..ok.)
*Upset stomach (same as above)
*Blood sugar problems
*Skin reactions such as rash, dry skin or itchy skin, redness and swelling at the sight of injection.
*Hair loss (I just really hope I don't loos my eyebrows....It freaks me out the way people look without eye brows!lol)
*Decreased appetite, weight loss (Oh Boy Here We Go! That Sucks!)
*Coughing (I should really think about stopping smoking.....naw, not right now. I have one nerve left and my quiting smoking right now would be a health risk to the general public)
*Dizziness
*Trouble sleeping
*Pain, Back pain
*Laryngitis, sore throat (Jimmy would love this side effect as long as it comes at the same time as the irratibility!)
*Increased Liver Function
*Loss of concentration, confusion. (Brain fog right?)
Possible serious side effects:
*Mental Health problems including irritability, depression, anxiety, aggressive behaviour, suicidal behaviour and homicidal thoughts. (Oh boy! Look out old ladies driving slow in the passing lane!)
*Blood problems - drop in cell counts (same as above)
* Infections
*Lung problems - pneumonia
*Eye problems-Blurred or loss of vision
*Autoimmune problems (Oh boy! Now I'm gonna have car trouble?!......lol...no I know what that means!)
*Macular degeneration (Optic nerve stuff right?)
* Development of an unusual rash - Stevens-Johnson syndrome (huh?lol.. I got a flash of myself covered in diaper rash ointment.)
The majority of this list of symptoms are contected to the standard treatment and not the study drug. The sypmtoms for the study drug are actually only the first 7 symptoms listed. (see I think that's what bothered me about the 130 people before me....they just don't know what all of the side effects are yet) What the hell....I might as well go for the gusto!
There are 7 arms of the study. It's a double blinded study with 6 groups recieving various dosages of the study drug along with various dosages of Pegasys and Copegus. 1 group will recieve a placebo with Pegasys and Copegus.
6 of the groups (5 recieving the study drug and the 1 group recieving the placebo) will ungo 24 weeks of the drug, pegasys and Copegus and then Pegasys and Copegus alone for an additional 24 weeks. 48 weeks total treatment.
In the 7th group they'll recieve the drug, Pegasys and Copegus but those who have no virus by week 4 and continue to have no virus until week 22 will stop all medication at week 24.
After the first 12 weeks anyone in any treatment group that is less effective compared to the standard of care arm will be offered re-treatment with a full 48-week course of treatment with the currently approved standard of care therapy in a seperate protocol. (I take this as if you fail to clear it and you were not on the full dosages of Pegasys and Copegus you'll be retreated with the full course. But what I don't yet understand, and I will ask is - If it's a double blinded study how does the research team know that you where given a less than standard treatment?)
So....here's the plan man. :-)
My blood work will come back within the next 2 weeks. If that went well I'll be scheduled for my biopsy right away. After the biopsy, assuming that that goes well also(no cancer or other problem causing liver damage), I'll be scheduled to have a visit with Sandy who will teach me how to inject myself and how to take the drugs.
And a new path in this little lourney of mine will begin.
Oh, and from today's date they have 35 days to get that first injection into me. The study Protocal says that after the 35 days they would have to start all over again with blood work, EKG, etc. They don,t want to do that.
After I start, I go for blood work once a week for the first four weeks. Then I go once on the 6th and the 8th week. Then the 12th, 18th, 22nd and 24th week. After that I guess we see what happens.
Oh yeah....if I'm in the unlucky part of the 7th group who did not clear the virus by the 4th through the 22nd week, I'll be on the study drug with pegasys and Copegus for week 25 through 48.
So thats it I think.
I've searched the net but I can't really find anything on it. If anyone finds anything please let me know.
All in all I think I'm ok. A little scared and concerned maybe. I'm trying to keep it all in perspective. Trying to constantly remind myself that just because they list side effects, it doesn't mean I'll have all of them....maybe I'll just have a few easy ones....maybe I'll have none. (boy I pray)
Sort of excited too...just to get this over with and get back to "normal" life again. I know what I have to do, so I pretty much want to get started doing it.
To end this post on the lighter side...A life insurance salesman stopped by tonight to present life insurance quotes for us. Believe it or not my premium was way cheaper than Jimmy's! He's healthy as hell and I didn't hide anything from the insurance salesman. PLUS I smoke! Go figure.
lol....it's good to be 8 years younger!
Sunday, January 6, 2008
Well who would have thought she'd call on a Saturday? Not me!....but she did!
Tuesday at 10:30 am the ball starts rolling. I go to Hershey to sign the consent forms for the study drug, I get blood work done, a physical and an EKG. I assume they'll set up the liver biopsy then.
After having every color of the rainbow of feelings with waiting I finally have an appointment and a little bit of fear is sitting in the pit of my stomach.
But that's ok...I moving forward.
I had something happen to me in public yesterday that made me panic and really freaked me out. Although I think I hid it well, I cut myself in a room full of people who know that I carry this little dragon with me. Even though I know that they can not just get it just because I bleed....I also know that the lack of education here would cause them to stampede.
Funny thing is, that's exactly what I wanted to do, run away from it. (or at least the situation) Blood has never scared me before....especially not mine. But standing there in front of room full of people who know what I have and looking at a little cut on my finger bleeding like a stuck pig, I got to tell you, I can't explain what it felt like.
Treatment....Is it time? Is it necessary? Will it be worth it? Hell yes.
I am ready.
Tuesday at 10:30 am the ball starts rolling. I go to Hershey to sign the consent forms for the study drug, I get blood work done, a physical and an EKG. I assume they'll set up the liver biopsy then.
After having every color of the rainbow of feelings with waiting I finally have an appointment and a little bit of fear is sitting in the pit of my stomach.
But that's ok...I moving forward.
I had something happen to me in public yesterday that made me panic and really freaked me out. Although I think I hid it well, I cut myself in a room full of people who know that I carry this little dragon with me. Even though I know that they can not just get it just because I bleed....I also know that the lack of education here would cause them to stampede.
Funny thing is, that's exactly what I wanted to do, run away from it. (or at least the situation) Blood has never scared me before....especially not mine. But standing there in front of room full of people who know what I have and looking at a little cut on my finger bleeding like a stuck pig, I got to tell you, I can't explain what it felt like.
Treatment....Is it time? Is it necessary? Will it be worth it? Hell yes.
I am ready.
Saturday, January 5, 2008
Yep, you guessed it.....I'm still waiting.
I'm finally over the flu and my regular fatigue has been nice to me for the week. Hit me hard all day Wednesday and made me crash by the time I got home from work. Aside from the need to lay down early each night....this has been a very good week.
The spidy web thingy's (spider nevi) are getting darker and 2 more showed up....nothing like looking in the mirror each morning and finding a reminder that you have Hep C and there's not a damn thing that you can do about it. I guess it's time for me to start wearing more make up. Anyone know a good brand of foundation?
I've carried my phone everywhere waiting for the call, but it didn't come. I shoved the thought of it into the back of my mind saying "Oh just don't think about it"......yeah right, like that really works.
I'll give it through Monday and if I hear nothing I'll call the research nurse
again on Tuesday or maybe Wednesday if I can hold out that long.
Worst part about waiting so long is that I'm loosing patience and it's transferring into my every day life. The little things are really ticking me off and I have to keep reminding myself to not react. I truly believe that the only thing that is stopping me from being a total bitch is the fact that I love the people who are around me and I can not hurt them by unloading all of whats bottled up inside my head onto them.
My "Stupid Smile" is getting very worn out now a days, but I still find a way to paste it on.
God help the stranger who pisses me off.
I'm finally over the flu and my regular fatigue has been nice to me for the week. Hit me hard all day Wednesday and made me crash by the time I got home from work. Aside from the need to lay down early each night....this has been a very good week.
The spidy web thingy's (spider nevi) are getting darker and 2 more showed up....nothing like looking in the mirror each morning and finding a reminder that you have Hep C and there's not a damn thing that you can do about it. I guess it's time for me to start wearing more make up. Anyone know a good brand of foundation?
I've carried my phone everywhere waiting for the call, but it didn't come. I shoved the thought of it into the back of my mind saying "Oh just don't think about it"......yeah right, like that really works.
I'll give it through Monday and if I hear nothing I'll call the research nurse
again on Tuesday or maybe Wednesday if I can hold out that long.Worst part about waiting so long is that I'm loosing patience and it's transferring into my every day life. The little things are really ticking me off and I have to keep reminding myself to not react. I truly believe that the only thing that is stopping me from being a total bitch is the fact that I love the people who are around me and I can not hurt them by unloading all of whats bottled up inside my head onto them.
My "Stupid Smile" is getting very worn out now a days, but I still find a way to paste it on.
God help the stranger who pisses me off.
Monday, December 31, 2007
HAPPY NEW YEAR!!
Well ...still waiting. But I kind of knew that I would be. I'm getting used to the wait. :-) I know it will come soon enough....
It's kind of ironic that I've got the flu for New Years! They say that the way that you spend New Years is the way that you'll spend the year. Yep! lol makes sense to me!
Other than feeling the effects of the flu and being tired...I feel good about the upcoming year.
Chemo and all......2008 is definitely going to be soooo much better than 2007!
2008 is my "gettin' over it year" ;-)
HAPPY NEW YEAR TO ALL!!!!
It's kind of ironic that I've got the flu for New Years! They say that the way that you spend New Years is the way that you'll spend the year. Yep! lol makes sense to me!
Other than feeling the effects of the flu and being tired...I feel good about the upcoming year.
Chemo and all......2008 is definitely going to be soooo much better than 2007!
2008 is my "gettin' over it year" ;-)
HAPPY NEW YEAR TO ALL!!!!
Sunday, December 23, 2007
2 days of feeling like crap....I slept 12 hours on friday night ...on and off all day yesterday and 15 hours last night! Either I had the flu or fatigue kicked my ass pretty good! It's hard to tell the difference sometimes.
Other than the feeling of "I just slept have my life away", I think I feel a whole lot better this morning. I just have that "slept way too much hangover". My body is used to maybe 7 hours of sleep a night.
I guess I should be thankful because I understand that some people get constant fatigue. Me, I'm fine for days and sometimes even a couple of weeks and then whammy! It hits all at once and knocks me on my ass. I only wish I could plan around it because it usually hits when I have the a whole lot of stuffed planned to get done. Jimmy cleaned the house on Friday and then did the holiday grocery shopping at 3 am this morning. He is such a wonderful man! I just don't deserve him.
42 today. Do I feel 42....well not as much today as I have been feeling!
This picture was taken on the day that I came home from the hospital with my Mother. I was born in a snow storm and they had to hold Christmas off for 6 days until we where able to get home through the snow. (lol, I was a pain in the ass from the get go)
Here they all are, my once upon a time my leave it to beaver family,minus my little sister who wasn't born yet and me....I was in the other room sleeping. Oh and my Dad, who I assume was taking the picture. Sitting down at my mothers piano are my brother Mike on my grandma Binkowski's lap (the Best Grandma in the world, I'm so glad that I got to see her again before she passed away a couple of years ago), my sister Debbie next to him and my Mother. Standing up (even though she was so short it looks like she's sitting) was the most wonderful Aunt you could have imagined, My Aunt Dolly. In the middle my oldest brother Bob. In the back my Mothers Father and Mother, Grandpa and Grandmother Bonine. (that woman never wore a pair of paints in her life....She was a Senators wife through and through!).
I feel like I have one thing in common with this picture....we're both 42 years old today.
I have my entire family under this roof this morning. A happy loving family that I am forever grateful for.
So yes....It is a very Happy Birthday for me! I feel good! And I feel very loved! :-)
Other than the feeling of "I just slept have my life away", I think I feel a whole lot better this morning. I just have that "slept way too much hangover". My body is used to maybe 7 hours of sleep a night.
I guess I should be thankful because I understand that some people get constant fatigue. Me, I'm fine for days and sometimes even a couple of weeks and then whammy! It hits all at once and knocks me on my ass. I only wish I could plan around it because it usually hits when I have the a whole lot of stuffed planned to get done. Jimmy cleaned the house on Friday and then did the holiday grocery shopping at 3 am this morning. He is such a wonderful man! I just don't deserve him.
42 today. Do I feel 42....well not as much today as I have been feeling!
This picture was taken on the day that I came home from the hospital with my Mother. I was born in a snow storm and they had to hold Christmas off for 6 days until we where able to get home through the snow. (lol, I was a pain in the ass from the get go)
Here they all are, my once upon a time my leave it to beaver family,minus my little sister who wasn't born yet and me....I was in the other room sleeping. Oh and my Dad, who I assume was taking the picture. Sitting down at my mothers piano are my brother Mike on my grandma Binkowski's lap (the Best Grandma in the world, I'm so glad that I got to see her again before she passed away a couple of years ago), my sister Debbie next to him and my Mother. Standing up (even though she was so short it looks like she's sitting) was the most wonderful Aunt you could have imagined, My Aunt Dolly. In the middle my oldest brother Bob. In the back my Mothers Father and Mother, Grandpa and Grandmother Bonine. (that woman never wore a pair of paints in her life....She was a Senators wife through and through!).
I feel like I have one thing in common with this picture....we're both 42 years old today.
I have my entire family under this roof this morning. A happy loving family that I am forever grateful for.
So yes....It is a very Happy Birthday for me! I feel good! And I feel very loved! :-)
Merry Christmas Everyone!
May Health, Happiness and Good Cheer come your way!
Saturday, December 22, 2007
Wednesday, December 19, 2007
I spoke to Sandy the research nurse yesterday. She said that she has to work up the appointments so that blood work is completed in 2 days and that with the Holidays it's impossible for that to happen because the labs will be closed for Monday and Tuesday.
She'll be calling me in between Christmas and the New Year with an appointment for after New Years. She has to get the date that everyone can be there...Dr. Smith for the physical, Lab for the blood work, tech for an Echo cardiogram, and herself for the paperwork that she has to go over with me.
So at least I know that I'm waiting for a new date.
She'll be calling me in between Christmas and the New Year with an appointment for after New Years. She has to get the date that everyone can be there...Dr. Smith for the physical, Lab for the blood work, tech for an Echo cardiogram, and herself for the paperwork that she has to go over with me.
So at least I know that I'm waiting for a new date.
Tuesday, December 18, 2007
Tuesday
Well it's 2 weeks ago today that I called the research nurse who told me that she'd call me back in 1 to 2 weeks....and still no word.
She's only looked at my name for about 3 weeks....I can't imagine her understanding my frustration, me I've been hanging here for 9 months.
If I don't hear from her by tomorrow I'll call again.
Wednesday is my daughters birthday. 18! Just doesn't seem possible.
Sunday is my birthday....42. yep, that feels very possible.
I've been reading and searching for things could help me with feeling so tired all the time and I ran across a few interesting things. the first was about fatigue and my little dragon.
It seems that when you have Hep C your body is forever battling the virus even while you sleep. The battle drains a lot of your energy resources causing you to wake up with this feeling of not sleeping. Makes sense...maybe.
Well I guess my body is putting up one hell of a battle because I wake most mornings feeling like shit .....except for the last 2 days.
Yesterday and today I feel absolutley great. I wish I knew what was causing me to feel good because I'd continue to do whatever it is.
I'm going to the GNC store tonight to see if I can't find some things to help, maybe B-12 and something called Coenzyme Q for some kind of pep. Ginger for nausea that comes and goes.
I don't know if any of it will help...but I have to do something until I get that phone call. Besides, it'll be my birthday present to me! ;-)
She's only looked at my name for about 3 weeks....I can't imagine her understanding my frustration, me I've been hanging here for 9 months.
If I don't hear from her by tomorrow I'll call again.
Wednesday is my daughters birthday. 18! Just doesn't seem possible.
Sunday is my birthday....42. yep, that feels very possible.
I've been reading and searching for things could help me with feeling so tired all the time and I ran across a few interesting things. the first was about fatigue and my little dragon.
It seems that when you have Hep C your body is forever battling the virus even while you sleep. The battle drains a lot of your energy resources causing you to wake up with this feeling of not sleeping. Makes sense...maybe.
Well I guess my body is putting up one hell of a battle because I wake most mornings feeling like shit .....except for the last 2 days.
Yesterday and today I feel absolutley great. I wish I knew what was causing me to feel good because I'd continue to do whatever it is.
I'm going to the GNC store tonight to see if I can't find some things to help, maybe B-12 and something called Coenzyme Q for some kind of pep. Ginger for nausea that comes and goes.
I don't know if any of it will help...but I have to do something until I get that phone call. Besides, it'll be my birthday present to me! ;-)
Monday, December 10, 2007
Things happen for a reason.
That's what they always tell me.
Am I writing this blog for a reason?
Maybe....maybe some where, somehow, someone will read it and they'll think to themselves "well shit, it could be worse" or "If someone else can do it, well then so can I" or even simply
"I'm not alone".
But, maybe it's just for me. A place to put my thoughts and my feelings.
It could just be my outlet...a place for my twisted little brain to vent all of the thoughts and emotions that come with this virus and life in general.
Or maybe it's just simply my own little self pity party.
Maybe it's a little bit of all 3.
No matter how you view this blog....when the day is done and the power button is turned off,
I've written this blog for me....
in the peace and quiet of this old building...
Here is honesty.
I got a call from my sister the other day telling me there is a reason that my Father has refused to except medical treatment for the past 2 years. A reason for him to be 89 pounds and have constant pneumonia.
He has cancer and has had it for a very long time. He's known it.
What strikes me odd is that the tone in her voice was almost thankful and mournful all at the same time.
Thankful I think because they can't say that her not forcing him into medical treatment was some kind elderly abuse.
Mournful because he was her Dad and he's dieing and she loves him.
When I first listened to her message on my machine I thought to myself "Cancer. Yes he has cancer. He's dieing....but he has been dieing....what is it that I feel?".
It took me a day and a half to call her back.
Still I couldn't figure out what it is that I feel.
But tonight.....sitting alone, I think I know what is that I feel.
A week ago it was disconnection. He was dieing and she was scared of loosing him and then being blamed for his death. And she was so sad that her Dad was dieing.
But to me he was already gone.
22 some odd years it took me to find him and when I did the man that I found was a skeleton of the man that was my father.
You see, my Father was strong and proud....and he stood tall.
The man in front of me then was a withered old drunk who wanted to take his long lost daughter to the bar for a "Glad to see ya again drink". This man that I found 22 years later confused me as to why I would ever have respected or feared him.
But then that's the problem isn't it? .....
There was a line in the sand when I was a child.
On one side was the "Before it happened" time.
A beautiful family. 2 boys and 3 girls. Dad was as good of a Father as any Father before him. Provided for his family, respected by his community, politically empowered....an A-number- one man.
And I loved him.
Then it happened and it happened again. And he couldn't protect me and he could not let it harm the man that he was. So he forgot and pretended it didn't happen.
But then his little girl stepped over the line in the sand.
When I was done running and came back home .... they where gone. I was 13 when I left. 15 when I went home.....and I was 33 when I found them again.
To this day I don't believe that they ever looked.
What is it that I feel?
Today I mourn for the man who chose not to protect his daughter. A coward who hid himself from the truth.
Today I mourn the man who found his hiding place in a bottle.
Today I mourn the man who nick named me pumpkin and taught me how to swim.
Who held my hand and made booboo's better. Who looked at me with pride in eye's as we played ball. The man who built a balance beam in the back yard for his daughters....
Once upon a time I had a Dad......and he made me strong.
I guess I better not write his eulogy.
That's what they always tell me.
Am I writing this blog for a reason?
Maybe....maybe some where, somehow, someone will read it and they'll think to themselves "well shit, it could be worse" or "If someone else can do it, well then so can I" or even simply
"I'm not alone".
But, maybe it's just for me. A place to put my thoughts and my feelings.
It could just be my outlet...a place for my twisted little brain to vent all of the thoughts and emotions that come with this virus and life in general.
Or maybe it's just simply my own little self pity party.
Maybe it's a little bit of all 3.
No matter how you view this blog....when the day is done and the power button is turned off,
I've written this blog for me....
in the peace and quiet of this old building...
Here is honesty.
I got a call from my sister the other day telling me there is a reason that my Father has refused to except medical treatment for the past 2 years. A reason for him to be 89 pounds and have constant pneumonia.
He has cancer and has had it for a very long time. He's known it.
What strikes me odd is that the tone in her voice was almost thankful and mournful all at the same time.
Thankful I think because they can't say that her not forcing him into medical treatment was some kind elderly abuse.
Mournful because he was her Dad and he's dieing and she loves him.
When I first listened to her message on my machine I thought to myself "Cancer. Yes he has cancer. He's dieing....but he has been dieing....what is it that I feel?".
It took me a day and a half to call her back.
Still I couldn't figure out what it is that I feel.
But tonight.....sitting alone, I think I know what is that I feel.
A week ago it was disconnection. He was dieing and she was scared of loosing him and then being blamed for his death. And she was so sad that her Dad was dieing.
But to me he was already gone.
22 some odd years it took me to find him and when I did the man that I found was a skeleton of the man that was my father.
You see, my Father was strong and proud....and he stood tall.
The man in front of me then was a withered old drunk who wanted to take his long lost daughter to the bar for a "Glad to see ya again drink". This man that I found 22 years later confused me as to why I would ever have respected or feared him.
But then that's the problem isn't it? .....
There was a line in the sand when I was a child.
On one side was the "Before it happened" time.
A beautiful family. 2 boys and 3 girls. Dad was as good of a Father as any Father before him. Provided for his family, respected by his community, politically empowered....an A-number- one man.
And I loved him.
Then it happened and it happened again. And he couldn't protect me and he could not let it harm the man that he was. So he forgot and pretended it didn't happen.
But then his little girl stepped over the line in the sand.
When I was done running and came back home .... they where gone. I was 13 when I left. 15 when I went home.....and I was 33 when I found them again.
To this day I don't believe that they ever looked.
What is it that I feel?
Today I mourn for the man who chose not to protect his daughter. A coward who hid himself from the truth.
Today I mourn the man who found his hiding place in a bottle.
Today I mourn the man who nick named me pumpkin and taught me how to swim.
Who held my hand and made booboo's better. Who looked at me with pride in eye's as we played ball. The man who built a balance beam in the back yard for his daughters....
Once upon a time I had a Dad......and he made me strong.
I guess I better not write his eulogy.
Sunday, December 9, 2007
Wednesday, December 5, 2007
To Paint or Not To Paint
Here's just another frustrating casualty of my Hep C and stress....
I have ability to paint $3000.00 paint jobs....but right now I pick up the brush and I'm retarded! I can't see past the first stroke.
I have ability to paint $3000.00 paint jobs....but right now I pick up the brush and I'm retarded! I can't see past the first stroke.
I'll sit down this weekend and I'll give it one more try. But if my brain will not allow it, I'll give the bike back and doing so will probably destroy my reputation for artwork on bikes. Doesn't that suck!
Maybe not....
Maybe then I can get back to the fundamental love and Passion for painting!
The piglet bike was painted for a guy named Hoggie. LOL Big bad bikers love little piglets.
The orange bike over 80 hours to paint(which I wish I had completed pictures of because it turned out awesome. The picture here is the tank before clear....clear makes it "pop") and was for a guy named Bam. Big guy! The nick name descibes him best. Big guy with the ability to seriously hurt. But he's a teddy bear for those who know him.
So this weekend we will see. To paint...or to hang it up for a year.
Tuesday, December 4, 2007
Just call me "The Lady In Waiting"!
I couldn't stand it! I hate waiting! Drives me nuts!
So I called Hershey and I spoke to Sandy the Research Nurse.
After explaining to her that I might not have had reception on my cell and I worried that I had missed her call (which was a fib). She said "No, you didn't miss my call". But she did say that Dr. Smith had told her about me and that it was good that I called because now she knows that I really am interested in the study.
She'll be making the appointments for the research over the next week to 2 weeks. ugh! More waiting!
She did answer a couple of questions. She called this the "Naive Trial". I'm not exactly sure why it's called that....I'll have to ask when I go there.
I still don't know what the drug code number is other than it starts with an "R". Sandy didn't have it in front of her while we where on the phone. It is a polymerase inhibitor and this is a Phase II trial study.
The trial is 24 weeks of this drug along with Interferon and Ribavirin, then 24 weeks of Interferon and Ribavirin alone.
The trial has 8 arms and it's double blinded, meaning that none us will know which arm of the trial I'm in. It is possible that I end up with the sugar pill! lol
I still have so many questions, but I guess they'll have to wait for Sandy to call with my appointment. At least she seems very nice!
As for me? Hey...well...you know me...Waiting is my middle name!
So I called Hershey and I spoke to Sandy the Research Nurse.
After explaining to her that I might not have had reception on my cell and I worried that I had missed her call (which was a fib). She said "No, you didn't miss my call". But she did say that Dr. Smith had told her about me and that it was good that I called because now she knows that I really am interested in the study.
She'll be making the appointments for the research over the next week to 2 weeks. ugh! More waiting!
She did answer a couple of questions. She called this the "Naive Trial". I'm not exactly sure why it's called that....I'll have to ask when I go there.
I still don't know what the drug code number is other than it starts with an "R". Sandy didn't have it in front of her while we where on the phone. It is a polymerase inhibitor and this is a Phase II trial study.
The trial is 24 weeks of this drug along with Interferon and Ribavirin, then 24 weeks of Interferon and Ribavirin alone.
The trial has 8 arms and it's double blinded, meaning that none us will know which arm of the trial I'm in. It is possible that I end up with the sugar pill! lol
I still have so many questions, but I guess they'll have to wait for Sandy to call with my appointment. At least she seems very nice!
As for me? Hey...well...you know me...Waiting is my middle name!
Still waiting...no phone call yet. If I don't hear from them by this afternoon I'll call them. Did I mention that I Hate waiting! lol, boy do I ever! But at least I know it won't be long....
I did have to come here to post this beautiful picture that Iris took while we were in NY!
From left to right....
Iris - an anchor support and a wonderful friend who has the ability to instantly touch your heart. She's completed tx and is virus free.....yeehaw!
Terry and his girlfriend M - Two new found friends. Terry is well into tx and with M on his side the both of them are unstoppable! Talk about 2 people perfect for each other.....the both of them are an inspiration to Jimmy and I.
Jimmy - The Love of my life
Me - ;-)
Teah - Superwoman! There is no other way to describe her. She's pushed through 72 weeks of tx! Hell she's even started a new job....it's kicking her ass...but she did it!
If nothing else comes out of this little adventure, I've gotten to know one hell of an incredible group of people! I am truly inspired.
I will figure how to sit down and paint it ...one day. lol...when I figure out how to paint again.
Monday, December 3, 2007
New York
What an awesome trip to NY!
Jimmy and I left on Saturday night to get a jump on the snow and ice storm that was headed our way to get closer to the City. We stayed the night in Iron Bound, Newark, NJ. with a beautiful view of the Potomac River.
We got up early in the morning and made our way into Manhattan to pick Iris up at the bus stop and then made our way to the East Village to meet Terry, Magda, Teah and her Sister for lunch and then the Metropolitan Museum.
It snowed just enough to make it feel like Christmas time.
It was all so absolutely wonderful see Iris and Teah again and now to meet Terry ....it's all such a special treat and an education. They've really made me feel like I'm not alone. Not to mention that the knowledge and experiences of all three of them is endless. Iris finished treatment 8 months ago. Teah has pretty much finished with 72 week! (I have no idea how she did it! She's amazing. - Tired ...but amazing.) and Terry is around 30 weeks into it. He looks Great. They all do.....but it's been and is hard...I know.
Jimmy and I left on Saturday night to get a jump on the snow and ice storm that was headed our way to get closer to the City. We stayed the night in Iron Bound, Newark, NJ. with a beautiful view of the Potomac River.
We got up early in the morning and made our way into Manhattan to pick Iris up at the bus stop and then made our way to the East Village to meet Terry, Magda, Teah and her Sister for lunch and then the Metropolitan Museum.
It snowed just enough to make it feel like Christmas time.
It was all so absolutely wonderful see Iris and Teah again and now to meet Terry ....it's all such a special treat and an education. They've really made me feel like I'm not alone. Not to mention that the knowledge and experiences of all three of them is endless. Iris finished treatment 8 months ago. Teah has pretty much finished with 72 week! (I have no idea how she did it! She's amazing. - Tired ...but amazing.) and Terry is around 30 weeks into it. He looks Great. They all do.....but it's been and is hard...I know.
I'm also glad that Jimmy was able to Magda, Terry's beautiful and bright Girl Friend. She's been through this treatment with Terry from the start and she's an insite to where Jimmy will be with me in the future. It was very good for them to be able to talk a little.
They've helped me with my list of questions for the Doctor and the research nurse. Now I can't wait for the phone call! If I don't hear anything by tomorrow, I'll call them.
The ride home was .....is hard to describe. First of all we didn't have windshield washer solvent. LOL Not a good thing to be missing when your in NY traffic with salty slush on the roads! We just didn't think about it until it was too late to pick some up.
Once we got a way from the city we found a gas station and grabbed some. While we where in there I got a phone call. My sister. My Dad is dieing. He's 89 pounds and he's got pneumonia. He's in the hospital and he's had a stroke.
Other than feeling bad for my Sister....I don't think I feel anything.
They've helped me with my list of questions for the Doctor and the research nurse. Now I can't wait for the phone call! If I don't hear anything by tomorrow, I'll call them.
The ride home was .....is hard to describe. First of all we didn't have windshield washer solvent. LOL Not a good thing to be missing when your in NY traffic with salty slush on the roads! We just didn't think about it until it was too late to pick some up.
Once we got a way from the city we found a gas station and grabbed some. While we where in there I got a phone call. My sister. My Dad is dieing. He's 89 pounds and he's got pneumonia. He's in the hospital and he's had a stroke.
Other than feeling bad for my Sister....I don't think I feel anything.
Saturday, December 1, 2007
The Scoop
Dr. Jill Smith is pretty cool. Lot's of explaining and a whole lot of calming news.
First, the little spider web looking blotches on my chest are called spider nevi (or something like that). There caused by my liver. But, from all the tests so far, my liver seems to be holding it's own...aside from the high enzymes results, all the rest of my blood test seem good.
In a couple of cases they even seem very good. My red blood cell count is very very good. She seemed happy to see that before treatment starts saying that a side effect of therapy is that it may lower my blood count. She said she can usually count on that being a major factor on anyone who starts off even slightly anemic. So I look very good in that department.
My heart sounds good. She can hear the murmur but she doesn't think it'll be any kind of factor in all of this. Heart surgery did me well and if it weren't for all of this I'd be feeling awesome.
Fatigue is the virus......nausea may be from the fatigue.
What else....
The plan:
There's a new research trial starting up beginning Dec. 4th and Doc. thinks I should be in it. Roche has a drug that will be added to go along with Pegylated Interferon and Ribavirin. She said it should increase my chances of clearing the virus. It's not named yet....still has a number.
Hershey will have 7 people in on the study. I could either jump right in to therapy with just Interferon and Riba. or I can go for the study. She said that if it where her she go for the study....I think she's right.
But now I wait for the phone call from her research nurse who has a list of patients that she's calling. I don't know if I'll be one of those seven and to be very honest....my luck in life is usually not that good.lol
If I make the study list I'll go back to Hershey (hopefully very soon) for blood work that will determine if I fall within what they're looking for. Then I'll have the Liver Biopsy. They want to wait to hear about the study before the biopsy because if I make the study the biopsy is paid for through Roche.
I'm hoping for the phone call next week...I hope early next week. Then in all reality this might not get moving until after the New Year. I'm going to push to have it happen sooner if it's at all possible.
With all of this my brain has relaxed a bit even though the bull shit everywhere else in my live is still piling on.
Oh yeah....lol....did I say I kinda have bad luck? lol All of the Christmas shopping is done. I did almost all of it on Amazon.com and one thing from Walmart.com and something else from Kmart. Those are the only 3 places that I've ever used that particular credit card at. The card was never used before.
So last night came a phone call....someone has been charging stuff on the credit card.....hundreds and hundreds of dollars! Yep! Credit Card Number has been hijacked! Son ofabitches!
And as for my sister Debbie....her last message said that her news was that she's engaged. So I called her, got her voice mail and told her I'm happy for her, Congratulations, said that I love her and hung up the phone. thing is that I really meant it.....I won't be calling her back.
So bottom line...My brain is strong again....my emotions in check....I'm back on the saddle and ready to charge this stupid little dragon again....(glad I don't have to use my credit card!lol)
:-)
First, the little spider web looking blotches on my chest are called spider nevi (or something like that). There caused by my liver. But, from all the tests so far, my liver seems to be holding it's own...aside from the high enzymes results, all the rest of my blood test seem good.
In a couple of cases they even seem very good. My red blood cell count is very very good. She seemed happy to see that before treatment starts saying that a side effect of therapy is that it may lower my blood count. She said she can usually count on that being a major factor on anyone who starts off even slightly anemic. So I look very good in that department.
My heart sounds good. She can hear the murmur but she doesn't think it'll be any kind of factor in all of this. Heart surgery did me well and if it weren't for all of this I'd be feeling awesome.
Fatigue is the virus......nausea may be from the fatigue.
What else....
The plan:
There's a new research trial starting up beginning Dec. 4th and Doc. thinks I should be in it. Roche has a drug that will be added to go along with Pegylated Interferon and Ribavirin. She said it should increase my chances of clearing the virus. It's not named yet....still has a number.
Hershey will have 7 people in on the study. I could either jump right in to therapy with just Interferon and Riba. or I can go for the study. She said that if it where her she go for the study....I think she's right.
But now I wait for the phone call from her research nurse who has a list of patients that she's calling. I don't know if I'll be one of those seven and to be very honest....my luck in life is usually not that good.lol
If I make the study list I'll go back to Hershey (hopefully very soon) for blood work that will determine if I fall within what they're looking for. Then I'll have the Liver Biopsy. They want to wait to hear about the study before the biopsy because if I make the study the biopsy is paid for through Roche.
I'm hoping for the phone call next week...I hope early next week. Then in all reality this might not get moving until after the New Year. I'm going to push to have it happen sooner if it's at all possible.
With all of this my brain has relaxed a bit even though the bull shit everywhere else in my live is still piling on.
Oh yeah....lol....did I say I kinda have bad luck? lol All of the Christmas shopping is done. I did almost all of it on Amazon.com and one thing from Walmart.com and something else from Kmart. Those are the only 3 places that I've ever used that particular credit card at. The card was never used before.
So last night came a phone call....someone has been charging stuff on the credit card.....hundreds and hundreds of dollars! Yep! Credit Card Number has been hijacked! Son ofabitches!
And as for my sister Debbie....her last message said that her news was that she's engaged. So I called her, got her voice mail and told her I'm happy for her, Congratulations, said that I love her and hung up the phone. thing is that I really meant it.....I won't be calling her back.
So bottom line...My brain is strong again....my emotions in check....I'm back on the saddle and ready to charge this stupid little dragon again....(glad I don't have to use my credit card!lol)
:-)
Thursday, November 29, 2007
O.M.G.!! Drama Drama Drama! What the hell!
I AM TRYING NOT TO STRESS OUT!!! I REALLY AM!
So this afternoon I happen to look at my cell phone and I see I missed 2 messages.
First message 6:00 pm-
"Ok....hey Sis...this is Deb...how the hell ya doin' ....been a long time....how ya doin'? Just checkin' on ya. Got a little bit of news for ya...well ok...I'll try back later. Maybe tomorrow. Ok love ya...bye"
Second Message 8:00 pm -
"Hey Sis...it's me again...I guess I'll keep tryin' ya...hope everythings good. I have some news...I'll try ya tomorrow"
It's been 6 months -22 days since I told her about Hep C. This is the first I've heard her voice since.
So with Hershey tomorrow and my brain already twisted....can anyone tell me what the hell I'm supposed to do or say her?
Please??????
Guess there wasn't already enough bull shit piled up....."kerplunk"....lets just load some more on there!
I AM TRYING NOT TO STRESS OUT!!! I REALLY AM!
So this afternoon I happen to look at my cell phone and I see I missed 2 messages.
First message 6:00 pm-
"Ok....hey Sis...this is Deb...how the hell ya doin' ....been a long time....how ya doin'? Just checkin' on ya. Got a little bit of news for ya...well ok...I'll try back later. Maybe tomorrow. Ok love ya...bye"
Second Message 8:00 pm -
"Hey Sis...it's me again...I guess I'll keep tryin' ya...hope everythings good. I have some news...I'll try ya tomorrow"
It's been 6 months -22 days since I told her about Hep C. This is the first I've heard her voice since.
So with Hershey tomorrow and my brain already twisted....can anyone tell me what the hell I'm supposed to do or say her?
Please??????
Guess there wasn't already enough bull shit piled up....."kerplunk"....lets just load some more on there!
Wednesday, November 28, 2007
It's all fine....just a roller coaster.
I'll be fine.
I am fine.
.....and besides, so what if I'm not? It is what it is....
F*** it...
Here is the one thing that I inherited from my families very political background - I have the stupid smile on....I say my "Good Morning's" and my "Have a Great Day's" as cheery as can be. I go through the business day just hunky doory.Hi Ho Hi Ho.
When I go home, I laugh and joke and I keep the stupid smile on.
So you see?
I am fine.
I'll be fine.
I am fine.
.....and besides, so what if I'm not? It is what it is....
F*** it...
Here is the one thing that I inherited from my families very political background - I have the stupid smile on....I say my "Good Morning's" and my "Have a Great Day's" as cheery as can be. I go through the business day just hunky doory.Hi Ho Hi Ho.
When I go home, I laugh and joke and I keep the stupid smile on.
So you see?
I am fine.
Saturday, November 24, 2007
T-Day
What an awesome Holiday this has been. I couldn't ask for more.
Wonderful food even though my turkey came out a little dry.
My beautiful Husband sitting next to me and my ever growing Family....we actually had all of the kids at one table at the same time! 
My Christmas tree was even able to get put up the day after! (only one more gift to buy)
Not to mention 4 full well needed days off of work! - can't forget that!
Incredible!
Did I mention that I love Thanksgiving?
6 more days....
I am thankful for Thanksgiving.
Sunday, November 18, 2007
*Snap....and it's Thanksgiving
Well thanks to U.C.'s advice, my Christmas shopping is pretty much done! For the first time in my life I'm finished before Thanksgiving....lol. I absolutely love Amazon.com! I got all of my shopping done online. No stress, No extra fatigue....just a lot of scrolling and searching on the computer.
Whats amazing is that I was able to buy stuff that is out of season like outdoor stuff that I could only buy usually during the warmer months.
I'm starting sound like an advertisement.....I know....but I'll tell ya....I hate shopping and this was a breeze!
My "to-do" list is getting shorter. Now I'm mostly concentrating on Thanksgiving. I got the shopping for dinner done. Complete with the kitchen cabinets cleaned and the Fridge cleaned out.
Today I have the Oven to clean and parts of the house to tackle.
But then there's the bike
. The only thing that I've gotten done on it is the beginning of the eagles head on the front fender.
. The only thing that I've gotten done on it is the beginning of the eagles head on the front fender.Just on the fender alone, an emblem has to go below the eagle....a riped and tattered US flag has to flow as if blowing in the wind around the eagle and over the top. On the back of the fender the saying "Some gave all, All gave some" (or something like that.
The owner right now is in Malaysia (long story) and won't be back until this week. He's very patient knowing that I'm having trouble.
Right now I don't like the eagle. But in my sleep I can picture it looking much better with the flag flowing around it. If I get too disgusted I'll just wipe it off and start again.
What is wrong with me!! I just can't paint right now! This will be the last painting that I'm going to do until I want to paint again.
As for how I'm feeling ok. Well, I wish I could gain weight, but how do you gain weight when all that you eat is mainly salads and chicken. All food smells so good, but a few bites of beef or deep fried food (to name a couple) make me nauseous. Maybe Thanksgiving will add a few pounds....or at least hold me at the weight I'm at right now.
I love Thanksgiving. I think it's my favorite. I can have my family all together and I can give them all the gift of a beautiful meal. I just love it!
The only thing that bothers me at this time of year is my own family. I don't care how many years go by or how many things happen....I think I'll always long for my family on the Holidays. But just like believing in Santa, I've come to realize that it's just not a reality. What my childhood didn't destroy...Hep C has.
12 Days to go.....now no matter what anyone tells me, that little "Fear" voice has stepped up in tone. The battle is closer and I'm ready....but the fear is still there. I guess it makes me stronger, because when I think about.....the fight has already begun.
Friday, November 9, 2007
The Alarm Clock
So much for getting up at 5am....I'm driving my poor husband nuts with the alarm!
He doesn't sleep well to begin with and falls asleep at around 2 or 3 am just about every morning. Then whammy....my alarm goes off. I'm tired and I hit the snooze a couple of times.
Well, you get the picture....
I'm not getting anything done anyway. I go into the bike parts to paint and I'm so tired that I screw the painting up. I have to start over tomorrow on an eagle that I began and totally screwed up. Time to wipe it off and begin over from scratch. I have to get this work done and out of my way.
I won't be taking another paint job for a while. I don't know if I'm just burned out on it (too much paid artwork kills the passion) or if I just have too much on my brain to sit and paint a big job like this bike.
I wish I could just hand it back and say "not now". But I feel obligated.
On top of that I have a plotter that can't read software. I've been working on that for days now.
On top of that, I have a website I haven't touched since I re-formatted my harddrive and a MySpace for the Bar that I haven't touch for weeks.
I also have a security camera system that needs to be put online for the bar and an inventory system that sits waiting to be set up.
And let's not forget the holidays....shit.... I forgot about the holidays!
Plus I work 9 to 5.
Now you know why I want to get up at 5 am.
At night I'm just too tired. I feel like I'm not getting anything done and time is slipping by.
Hurry hurry hurry....21 days to go and I'm running out of time.
I'm both excited to get to started getting over this and scared, and panicked. I want everything done....but I'm beginning to see that that is not realistic.
I'm giving up 5am. At 6:30 am I'll get done what I can and maybe I'll be able to find more energy in the evening.
Did I mention how much I hate this? "....is that where my passion has gone? Maybe I should paint a dragon....."
He doesn't sleep well to begin with and falls asleep at around 2 or 3 am just about every morning. Then whammy....my alarm goes off. I'm tired and I hit the snooze a couple of times.
Well, you get the picture....
I'm not getting anything done anyway. I go into the bike parts to paint and I'm so tired that I screw the painting up. I have to start over tomorrow on an eagle that I began and totally screwed up. Time to wipe it off and begin over from scratch. I have to get this work done and out of my way.
I won't be taking another paint job for a while. I don't know if I'm just burned out on it (too much paid artwork kills the passion) or if I just have too much on my brain to sit and paint a big job like this bike.
I wish I could just hand it back and say "not now". But I feel obligated.
On top of that I have a plotter that can't read software. I've been working on that for days now.
On top of that, I have a website I haven't touched since I re-formatted my harddrive and a MySpace for the Bar that I haven't touch for weeks.
I also have a security camera system that needs to be put online for the bar and an inventory system that sits waiting to be set up.
And let's not forget the holidays....shit.... I forgot about the holidays!
Plus I work 9 to 5.
Now you know why I want to get up at 5 am.
At night I'm just too tired. I feel like I'm not getting anything done and time is slipping by.
Hurry hurry hurry....21 days to go and I'm running out of time.
I'm both excited to get to started getting over this and scared, and panicked. I want everything done....but I'm beginning to see that that is not realistic.
I'm giving up 5am. At 6:30 am I'll get done what I can and maybe I'll be able to find more energy in the evening.
Did I mention how much I hate this? "....is that where my passion has gone? Maybe I should paint a dragon....."
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