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!!!!

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! :-)



Merry Christmas Everyone!

May Health, Happiness and Good Cheer come your way!

Saturday, December 22, 2007

Ta Da! 18!!

My Daughter Crystal
18....an adult! EEEEEK!!!
How the hell did that happen!
Happy Birthday Baby!

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.

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! ;-)

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.

Sunday, December 9, 2007

I Give up for the weekend! I'm giving myself a G.D. Headache over this and I'm getting no where.

Maybe I'll give it one last try next weekend. I'm just out of patients and my mind is twisted.

This ugly Eagle Sucks! Funny how the mood that I'm in transfers into my artwork.

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'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!







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.
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.

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)

:-)