For the past few day's I feel really good! My little dragon has been giving me a break now for almost a full week! (knock on wood) Instead of fatigue I've found the normal tiredness at the end of the day....I've actually been able to eat half assed.
Last night Jimmy and I went to dinner at a local fine cuisine restaurant up the street from us called Martins. Awesome food! I had lightly smoked fish layered with bacon and sliced apple and a sauce that is out of this world! I wasn't sure I would like it. It sounded somewhat strange due to the apples....but it was scrumptious! I couldn't help but to eat it all. lol, that's a big deal for me!
I want these good days to last. I'm hoping that they do so that Jimmy and I can enjoy some "good" time together before tx begins. Even if tx is nice to me....I still want us to know "normal" before tx starts.
Who knows, maybe it's my will to have those good days that's battling the dragon into submission. That would be a nice thought if it where possible.
My Mother and I have a date every Thursday night now to go online and talk through Yahoo IM's. It's a nice way to stay in touch in between phone calls. We've kept our date for 2 weeks now and our IM's have added some peace to my mind. Her support is something that no one else in this world could give to me. It's nice to be a daughter again.
Debbie's getting Married in the beginning of February. Still I haven't heard from her. I'm thinking I won't and with everything that's going on I'm thankful for that. I just don't have it in me to give even a little bit. And to be honest I don't want to.
Her marriage reminds of another reason for why I feel that way. See, she was one of my bridesmaids when Jimmy and I got married. My Maid-of-Honor was my best friend. It wasn't too long ago, that my best friend told me why Debbie is not one of her favorite people. It seems that when Debbie traveled up for my wedding she told my Maid-of-Honor that she didn't come all the way up here for my wedding "Hell it's not like Laurie hasn't been married before" she said that she came up here to meet JJ (a friend of Jimmy's and mine who had been chatting with her online for a long time). I know it's true. I had ignored her downing most of a bottle of Jim Beam before walking with me down the Isle and then her acting like an ass throughout the wedding night because I just thought that she was blowing off steam at the time due to her every day life stress. But looking back....and hearing the stories about her from friends...it all adds up. It was my wedding and nothing or no one could touch the happiness that I was in. So I ignored her craziness. But looking back ...it all comes together into a full picture and I suppose I feel a little like a fool for believing that after all of these years my sister and I would have a "real" sister relationship.
But enough with that rambling....lol. Life goes on and right now the going is good.
I'm hoping that Sandy, the research nurse, will call early in the week next week with my start date. I want to know what my liver biopsy showed and I'm very interested in knowing what my viral load is now (from the blood work a couple of weeks ago).
Seems like everybody has a different opinion on viral counts. Some say that it could go up and down without treatment....some say it only either stays the same or goes up without treatment. They also say it doesn't matter what the count is before treatment, it only matters that tx makes it drop.
Something about it makes me think that it should matter. If it dropped without treatment, in my mind I think that tx should send it spiralling down. On the other hand, if it's higher now, doesn't it mean that I now have more of it to kill? And, if it's the same as 11 months ago, isn't it just holding steady? Viral loads must mean something more than being a measurement for how tx is progressing.
So many questions....and so many different answers from so many different corners of the world. I start to get the idea that really no one knows for sure what the answers are.
Anyway, these are the thoughts and ramblings of a woman tortured by waiting...lol...what do ya expect! :)
Goto go get ready to open the bar.
Tune in next time for the ramblings of Laurie...lol ;)
Life is good.
Jimmy and our San Diego sunset a year ago. We ran up and down that beach collecting sand dollars and exploring the wildlife caught in the pools of the rock (boulder) ledges. We spent hours playing and adventuring on this beach. I'd love to go back one day.
5 comments:
Glad to hear you're feeling better. Viral load can go up and down. Mine swings between 4 and 6 million. It has to do with how well one's immune system is working at any particular time. I haven't heard of anyone's staying the same. The VL doesn't co-incide with degree of liver damage present. It's best use is to measure response to treatment. People with a load below 800,000 seem have a little better shot at SVR according to the studies.
Have some fun with Jimmy and enjoy the time off from the dragon!
Medicine in general and HCV treatment in particular is not an exact science. It's just a recipe 'they' follow that works most of the time. For you, 'they' are testing a new ingredient to see if it increases the likeliness of SVR. I'm sure you'll hear from Sandy this week. Get a paper copy of your biopsy results and post them here. Or, send me an email, or call me (after 7 weekdays, or on the weekend, I only get so many free minutes ;-} ).
Hi Laurie,
I understand you feeling anxious and ready to just it started. I have had my biopsy and went in today for the rest of the screening and numerous test and bloodwork. I will be starting ( if accepted after all the tests) on March 1 2008. I was told most everything exactly as you but I was told this is a phase 3 study the last before all the info goes to the FDA. I enjoy your blog and allthough we are far apart in miles I feel like there is someone to go through this with who speaks most of what I feel too. Your spirit has lifted me and I thank you ever so much. I see your San Diego sunsets daily. They are always different and always beautiful.
Rosie
Hi Rosie! :)
awww...the sunsets there are so beautiful!
Did they give you the consent forms on the drug you'll be starting? On it should say the name (or in this drugs case, the number) of the drug. It also gives you a little background info on any trials before yours.
The consent form I have say's that it's RO4588161 and that 130 people were in the phase 1 trial before this one. It calls this a phase 2 trial. It tells of the sides that those 130 people had.
What does yours say?
There seems to be a few drugs going into trials right now. Albuferon and Thymosin to name a couple. Both of these are Phase 3 drugs. (RO4588161 doesn't have a name like that yet...they still consider it to be a baby..it's only a number until it grows up....lol)
I'd love to know about the study that your going into! Let me know.
I'm thinking that my start date will be Feb. 11th. But I really don't know until I get the call. I'm trying very hard right now not to call the research nurse because my husband is flying out to Denver on Saturday and won't be back until late Tuesday night. I don't want the nurse to pick Monday or Tuesday for my start date! LOL
It is very nice that we'll be starting at about the same time. Strength and support in numbers. I don't know how anyone could go through this without the support of others who are going through this also.
It's very good to not feel like your alone!
Keep in touch Rosie. I'm here if you ever need me. I'm just an email or a post away!
My thoughts and prayers are with you,
Laurie
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