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.
Monday, January 14, 2008
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....."
Wednesday, October 31, 2007
October
*SNAP and October is gone.
It just started and I turned around and here it is...over.
29 day's to go until Hershey.
There's a part of me that wants so bad for this to be over....but then there's this scared little voice down deep in my soul who quietly say's "Don't rush it".
The waiting is making it worse.
I've been feeling good lately. For the past couple of weeks the fatigue that I've had was self inflicted. There's just so many things that I want to do before treatment. I get up at 5 am just to have a few extra hours.
It'll be funny if when I start I don't have any of the nasty side effects. Wouldn't that be great?
I'm not counting on it. I'm counting on the worst and then maybe if it's not the worst...I'll have a nice surprise.
Why do I come here and write when I'm down?
I hate this...
....and the calendar turns to November.
It just started and I turned around and here it is...over.
29 day's to go until Hershey.
There's a part of me that wants so bad for this to be over....but then there's this scared little voice down deep in my soul who quietly say's "Don't rush it".
The waiting is making it worse.
I've been feeling good lately. For the past couple of weeks the fatigue that I've had was self inflicted. There's just so many things that I want to do before treatment. I get up at 5 am just to have a few extra hours.
It'll be funny if when I start I don't have any of the nasty side effects. Wouldn't that be great?
I'm not counting on it. I'm counting on the worst and then maybe if it's not the worst...I'll have a nice surprise.
Why do I come here and write when I'm down?
I hate this...
....and the calendar turns to November.
Tuesday, October 23, 2007
Yeah!!! U.C. IS VIRUS FREE!!!!
What awesome news!
Went to NY on Saturday to hang out with U.C. and Tea. What a wonderful time. They are two of the most beautiful people that I know. It was such a pleasure spending the day with them and getting to know them.
Thank you both for such a great day!
While we were in NY, U.C. broke the news....She's Virus Free!
Boy the day just couldn't have been any better! How incrediably wonderful is that!
The both of them are my inspiration and have become a strength that I'll carry with me throughout my treatment.
U.C. Completed her treatment and came out at the other end Virus Free and Tea has just completed her 66th shot! Now if these two are'nt the best examples to follow no one is!
I love and admire both of them.
I love and admire both of them.
Got lost going into NY and coming out...lol. Damn mapquest!
On the way in I wanted the Lincoln Tunnel and wound up in Jersey City at the Holland Tunnel. (I usually go the Gearge Washington Bridge but mapquest sent me to the Lincoln Tunnel...I thought it knew better than me)
On the way out I wound up in major traffic downtown and got turned around. I found myself on the east side of the island and had to go back through the traffic to get to the George Washington Bridge (I was going home the way that I knew) but somehow I found myself at the Throgneck bridge! WOW...way out of my way! Stopped at the bridge regained my direction and finally found the Gearge Washington Bridge. LOL...set out to leave the island at around 7:30 and got home at 11:30! It's usually only a 2-1/2 hour drive.
Anyway....getting lost always teaches me a new place. I had a nice little tour of NY. lol
As for me...I've felt great all weekend. Poor Jimmy seems to have taken feeling bad away from me and has gotten a cold. I hate seeing him sick, he worries too much about what he's not getting done and can't really rest because it's so much on his mind. I wish I could just take care of his work for him.
38 days to go until I'm in Hershey.
That's not a long time right?
Wednesday, October 10, 2007
October is almost half gone....
So the A & B vaccinations are done.Yesterday at work was hard. I don't know if I ate something that I shouldn't have or what caused it, but I was so fatigued that my body literally ached (hurt) wanting to lay down. I was worried that I was getting sick, I pushed through the long day and got it over with. Hell I even made Stromboli for the Dart teams. (Tuesday Night is Dart Tournament night at the Bar)
Everyone tells me not to push myself, but I feel so much better if I can. In my mind, if I didn't push through yesterday I would have woken up this morning not feeling as good as I do right now. What everyone doesn't understand is that when I felt like shit like yesterday, if I had not pushed through the day I would have slept like shit last night...and felt like shit today. The more I give into, it the longer it grabs a hold of me.
Might not make any sense to anyone else, but it does to me.
I know that when I start treatment all of that might change....but for now I push through it. When treatment starts I'll go with the flow and see what works.
I woke up this morning and Wa-La....I feel fine again! It's morning, the sun's coming up and the day is going to be beautiful! ....rain and all...lol
That's what counts!
The leaves are almost all changed. The weather is finally changing to colder this week and I have 51 Days left until I go to Hershey
....not much longer now!
Saturday, October 6, 2007
Forgiving or move on...
Tea...I've spent more than half of my life trying to forgive.
Trying to forgive things that caused me to be separated from my "Leave It To Beaver" type of family.
First I struggled to find them...then I struggled to except them and tried to move past what happened so many years ago. Things that my parents would never or could never discuss even today. Things that to them are dirty little secrets that they've swept under some old rug and would just as soon forget about. (even though it's almost half of my life and I am what was being swept)
My life has made me strong. My past has taught me so many lessons that most people are never taught.
Forgiving has been a very hard lesson to except.
I've spent so many years without them....raising myself without their support and guidance. Wishing it all to be different and crying because it wasn't.
But then I found them...Sisters and Brothers...a Mother and Father. All of my little girl memories came rushing back. All the good memories ....sunny days and Christmas nights with my mother at the piano. Time with my Grandmother. So much good....
I was coping with pretending nothing happened because I believed that having them in my life was more important to me then revenge or anger.
Debbie (my sister) was just a young girl when I left so many years ago. She had no control over what was happening....although now I know that she knew back then what was happening to me...When I found her I knew I couldn't lay blame on her, she was just too young ....she was 18 the day I left.
I think she just excepted that I was gone and moved on with her life.
I guess out of everything, the part that is the hardest thing is to "forgive".
I wanted to be home...safe and sound...but everyone moved on...and I became lost with no one to rescue me.
So forgive....I've tried forgiving...I thought I was winning the battle...but I think I'm wrong...I think she's just still moving on.
See, it's not just the Hep C. It's not just the lack of education about a virus. It's not even as though she thinks she can contract the virus from me, she's in Florida and I'm in PA.
It's the moving on.
It's the point that I searched for them...I looked for them...and I found them. I traveled to meet them and I kept myself in their lives since then.
It's no longer about forgiving....now it's about reality.
Hep C has given me a reality check.
So here it is, my little reality check...
When I hear the phone ring and Debbie crosses my mind....move on.
When I'm down and I want my Mommy.....move on.
Sometimes moving on is the only thing that we can do....through all of these years....through an entire 42 years of life....it's taken a tiny little virus to teach me one of life's biggest and hardest lessons.
I'm moving on.
Trying to forgive things that caused me to be separated from my "Leave It To Beaver" type of family.
First I struggled to find them...then I struggled to except them and tried to move past what happened so many years ago. Things that my parents would never or could never discuss even today. Things that to them are dirty little secrets that they've swept under some old rug and would just as soon forget about. (even though it's almost half of my life and I am what was being swept)
My life has made me strong. My past has taught me so many lessons that most people are never taught.
Forgiving has been a very hard lesson to except.
I've spent so many years without them....raising myself without their support and guidance. Wishing it all to be different and crying because it wasn't.But then I found them...Sisters and Brothers...a Mother and Father. All of my little girl memories came rushing back. All the good memories ....sunny days and Christmas nights with my mother at the piano. Time with my Grandmother. So much good....
I was coping with pretending nothing happened because I believed that having them in my life was more important to me then revenge or anger.
Debbie (my sister) was just a young girl when I left so many years ago. She had no control over what was happening....although now I know that she knew back then what was happening to me...When I found her I knew I couldn't lay blame on her, she was just too young ....she was 18 the day I left.
I think she just excepted that I was gone and moved on with her life.
I guess out of everything, the part that is the hardest thing is to "forgive".
I wanted to be home...safe and sound...but everyone moved on...and I became lost with no one to rescue me.
So forgive....I've tried forgiving...I thought I was winning the battle...but I think I'm wrong...I think she's just still moving on.
See, it's not just the Hep C. It's not just the lack of education about a virus. It's not even as though she thinks she can contract the virus from me, she's in Florida and I'm in PA.
It's the moving on.
It's the point that I searched for them...I looked for them...and I found them. I traveled to meet them and I kept myself in their lives since then.
It's no longer about forgiving....now it's about reality.
Hep C has given me a reality check.
So here it is, my little reality check...
When I hear the phone ring and Debbie crosses my mind....move on.
When I'm down and I want my Mommy.....move on.
Sometimes moving on is the only thing that we can do....through all of these years....through an entire 42 years of life....it's taken a tiny little virus to teach me one of life's biggest and hardest lessons.
I'm moving on.
Friday, October 5, 2007
Grrrrrr....Fatigue
What is with this? I know it's Hep C that causes fatigue, but what is it about Hep C that causes it?
I mean what is the Hep C doing that makes me drag my butt so much?
I go to bed at night and 9 times out of 10 I'm so tired that I can puke....then I wake up tired. The 1 time out of 10 that I'm not totally wiped out at night I usually wake up way too early, unable to go back to sleep but feeling like hell....so I just get up anyway.
Coffee and tea are my best friends (even though I know they shouldn't be).
And who knew that fatigue could be so uncomfortable? My whole body screems "I'm exausted lay me down". But I try to push through.
I live with it....sometimes it's not easy but I try to keep it to myself and carry on. It seems like if I bitch about it, it just gets harder....it seems like the fatigue grabs a harder hold like something in my brain is just giving into being tired. If I just try to struggle through the day and put my mind elsewhere I end up on the couch the moment that I come through my front door...but I made it through the day.
Being busy at work seems to help too. The less that I have time to think about it the better I'm able to push through the day. It hurts my concentration at times, but I'm starting to realize that I have to work harder at paying attention. That's a chore in itself.
Food seems to make a difference. I've eaten so many salads that I should be turning green. Last night I had pasta and this morning I'm not feeling too terrible.Give me a hamburger or deep fried food and I will feel like shit a few hours later.
Then it's a circle that I end up in...Eat a burger ...feel like shit....get exausted...don't eat because I feel like shit...feel like shit because I'm not eating...get upset because I lost some weight...back to salads.
I don't think it's my liver. I haven't had a liver biopsy yet, but I don't think my liver could be that bad. Or at least I hope not.
So what it has to be the Hep C., what exactly is it doing that makes me feel like this?
Well anyway....3 days until my last A&B vacine.
76 days until I go to Hershey.
And my sister...she hasn't called. I think I'll just stop waiting for that one. (shouldn't matter anyway)
"I don't feel old. I don't feel anything until noon. Then it's time for my nap." - Bob Hope
I mean what is the Hep C doing that makes me drag my butt so much?
I go to bed at night and 9 times out of 10 I'm so tired that I can puke....then I wake up tired. The 1 time out of 10 that I'm not totally wiped out at night I usually wake up way too early, unable to go back to sleep but feeling like hell....so I just get up anyway.
Coffee and tea are my best friends (even though I know they shouldn't be).
And who knew that fatigue could be so uncomfortable? My whole body screems "I'm exausted lay me down". But I try to push through.
I live with it....sometimes it's not easy but I try to keep it to myself and carry on. It seems like if I bitch about it, it just gets harder....it seems like the fatigue grabs a harder hold like something in my brain is just giving into being tired. If I just try to struggle through the day and put my mind elsewhere I end up on the couch the moment that I come through my front door...but I made it through the day.
Being busy at work seems to help too. The less that I have time to think about it the better I'm able to push through the day. It hurts my concentration at times, but I'm starting to realize that I have to work harder at paying attention. That's a chore in itself.
Food seems to make a difference. I've eaten so many salads that I should be turning green. Last night I had pasta and this morning I'm not feeling too terrible.Give me a hamburger or deep fried food and I will feel like shit a few hours later.
Then it's a circle that I end up in...Eat a burger ...feel like shit....get exausted...don't eat because I feel like shit...feel like shit because I'm not eating...get upset because I lost some weight...back to salads.
I don't think it's my liver. I haven't had a liver biopsy yet, but I don't think my liver could be that bad. Or at least I hope not.
So what it has to be the Hep C., what exactly is it doing that makes me feel like this?
Well anyway....3 days until my last A&B vacine.
76 days until I go to Hershey.
And my sister...she hasn't called. I think I'll just stop waiting for that one. (shouldn't matter anyway)
Hi Ho, Hi Ho it's off to work I go.....
"I don't feel old. I don't feel anything until noon. Then it's time for my nap." - Bob Hope
Wednesday, September 26, 2007
My Last hoorah before teatment
Jimmy and I left at 10 am on Saturday morning and by the time we got back last night we had traveled 1605 beautiful miles!Went part way down the Skyline Drive.
Beautiful but got boring after a while of 35 miles and hour. We didn't do the whole thing, we had too much to see yet and a long way to go!
From there we went down to the Smokey Mountains and spent the night just before Pigeon Forge.
Jimmy wanted to check out Dolly.
That was a lot of fun!!!
Road a Steam engine and we even went on a roller coaster!
After leaving Dolly Wood we crossed over into Cherokee. I haven't been there in years and it's getting very old looking.
But of course the view was breath taking!
Cruising across South Carolina North Carolina, we headed for Virginia Beach.
South Carolina at Sunset.
Virginia Beach is definitely for lovers! What a beautiful place!
I Love the sunrise at the beach!
After a 8 am swim in the ocean, we where off again! The water was incredible. I would have thought it would be freezing! But it was a nice temp and I'm glad Jimmy talked me into the swim. What a blast!
Next came the Chesapeake Bay Bridge. I'd love to know how they put the tunnels into it!
Up the coast to Ocean City for lunch and a bike ride on the board walk. I forgot my camera! :-(
We wanted to stop up in Baltimore to visit U.C. but the time got away from us and rush hour was hitting the city. So we opted out of the insanity and veared off to Philly then north to home.
I wanted so bad to meet her.....I'll just have to meet her in N.Y. when she travels up that way! It'll be nicer anyway....we'll have more time to sit and chat!
Jimmy is a trooper! He drove until his butt hurt and his legs killed him. 1605 miles and not a complaint about it! Now that's true love!!!
Well...12 days until my last Hep A & B vacine. 65 days until we go to Hershey.
It's been 109 days since I told my Sister about my Hep C.....and I haven't heard from her since. Took me 20 years to find her (after not seeing her since I was 13) and it took one 10 minute phone call to loose her again.... yeah well.
I don't think I'll tell my Mother. But if she finds out and does the same thing....I lived 20 years of my life without them, I guess I could live the rest of it the same way. I wish it were different...but it's not.
187 days since I found out. Time rushes by.I have the feeling my counting has just begun.
"Peace is seeing a sunset and knowing who to thank. The happiest people don't necessarily have the best of everything; they just make the best of everything they have."
Tuesday, September 11, 2007
God usually doesn't agree with my plans.
So 4 months ago I started to make plans for my "End of the summer/before treatment starts" big bang. I wanted one last good event before treatment started and the possibility of our year or year and a half struggle began.
So I booked a whitewater water rafting trip in upstate NY and we invited our kids with their boyfriend and girl friends, Jimmy's brother, his wife and Jimmy's niece and nephew. 14 of us total. 4 or 5 coming from in from Vermont.
It was going to be a wonderful day! Family and friends....the excitement of the river.....fun and good memories for all...
But God just didn't agree.
It's funny how our plans don't always fit into the "Big Picture".
The rivers in upstate NY are low and the State has closed them to rafting. Just too low to be safe.
It's my luck!
Or is there something else that I'm supposed to do. Sometimes I just don't understand. Sometimes I just don't see it. Sometimes I'm just too selfish and I want something that just isn't in the cards that are dealt.
So my wonderful Husband has come up with an alternative plan. Next Saturday we'll take a ride to the Sky Line Drive through the Appalacian Mountians and the up the coast through S.C and N.C. and back home. It's beautiful ride and time together that I think we very much need.
So here is "Gods" plan..... (via Jimmy)
I get to spend some true quality time with the most wonderful man in the world relaxing and strolling along the country side. We'll drive through the Mountains and come out at the ocean. Up the coast line we'll go, looking for old fishing communities to stop in at for a bite to eat.
We need this break away from reality and now I'm looking forward to some peaceful time alone with Jimmy.
LOL.....I think I'm actually starting to like God's little changes.
So I booked a whitewater water rafting trip in upstate NY and we invited our kids with their boyfriend and girl friends, Jimmy's brother, his wife and Jimmy's niece and nephew. 14 of us total. 4 or 5 coming from in from Vermont.
It was going to be a wonderful day! Family and friends....the excitement of the river.....fun and good memories for all...
But God just didn't agree.
It's funny how our plans don't always fit into the "Big Picture".
The rivers in upstate NY are low and the State has closed them to rafting. Just too low to be safe.
It's my luck!
Or is there something else that I'm supposed to do. Sometimes I just don't understand. Sometimes I just don't see it. Sometimes I'm just too selfish and I want something that just isn't in the cards that are dealt.
So my wonderful Husband has come up with an alternative plan. Next Saturday we'll take a ride to the Sky Line Drive through the Appalacian Mountians and the up the coast through S.C and N.C. and back home. It's beautiful ride and time together that I think we very much need.
So here is "Gods" plan..... (via Jimmy)
I get to spend some true quality time with the most wonderful man in the world relaxing and strolling along the country side. We'll drive through the Mountains and come out at the ocean. Up the coast line we'll go, looking for old fishing communities to stop in at for a bite to eat.
We need this break away from reality and now I'm looking forward to some peaceful time alone with Jimmy.
LOL.....I think I'm actually starting to like God's little changes.
Tuesday, September 4, 2007
Just a story to share.
So a few months ago (4...maybe 5)while I was here at work I lost one of my earrings. A pair that I got for Christmas from a Secret Santa. (We exchange presents at Christmas time with a few people at the Bar.)
Silver with jade stones. It matched the necklace that Jimmy bought for me in Milwaukee. I loved wearing them with this necklace.
When I lost it, I looked everywhere and I couldn't find it. I finally took the one that I didn't loose out of my purse about a month ago and I put it in my drawer at home.
So today I'm outside going for a walk and my mind wonders to strange places sometimes. I was walking along thinking about the grass crunching under my feet and looking at the tree's, thinking that "Oh well, looks like everything is dieing....the season is ending".
I started thinking about death and I was thinking that one day it'll be my turn. I started thinking to myself "I wonder if there really is a God or do we just keel over one day at that's the end of it.....into nothingness".
I was thinking that I hope there is a God....I hate the thought of nothingness. Just as I thought that, I saw something in the grass and I bent down to pick it up.
My earring!
I lost it months ago and it was laying there in the sun shining from the silver. I couldn't believe it! It's like God was listening and decided to let me know.......
So there I am in the middle of the yard here, holding the earring up to the sky and saying " Ok...I get it! You convinced me! Hey....thanks for the earring back and thanks for the reminder! I know I forget sometimes but you always find a way to remind me!"
How silly I must have looked to the people out sitting in their cars during lunch break! But do you know what? I really didn't care how I looked.....
Ain't that so cool!
Silver with jade stones. It matched the necklace that Jimmy bought for me in Milwaukee. I loved wearing them with this necklace.
When I lost it, I looked everywhere and I couldn't find it. I finally took the one that I didn't loose out of my purse about a month ago and I put it in my drawer at home.
So today I'm outside going for a walk and my mind wonders to strange places sometimes. I was walking along thinking about the grass crunching under my feet and looking at the tree's, thinking that "Oh well, looks like everything is dieing....the season is ending".
I started thinking about death and I was thinking that one day it'll be my turn. I started thinking to myself "I wonder if there really is a God or do we just keel over one day at that's the end of it.....into nothingness".
I was thinking that I hope there is a God....I hate the thought of nothingness. Just as I thought that, I saw something in the grass and I bent down to pick it up.
My earring!
I lost it months ago and it was laying there in the sun shining from the silver. I couldn't believe it! It's like God was listening and decided to let me know.......
So there I am in the middle of the yard here, holding the earring up to the sky and saying " Ok...I get it! You convinced me! Hey....thanks for the earring back and thanks for the reminder! I know I forget sometimes but you always find a way to remind me!"
How silly I must have looked to the people out sitting in their cars during lunch break! But do you know what? I really didn't care how I looked.....
Ain't that so cool!
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