Wow!! Hard to believe it's the 22nd already! Where has the time gone? Lately I have really been looking for distractions EVERYWHERE! I have really been diving into my work and research in my field just so as not to think much about treatment and the "alerts" on my lab reports. Trying to keep that "mind over matter" in check!
The roller coaster ride has definitely got me dizzy! White blood cells up....white blood cells down....white blood cells up....white blood cells down. Treatment reduced to half....treatment back to full....treatment reduced.....treatment back up to full. Side effects reduced....side effects debilitating....and so on.
I have had a few really good days in the past few weeks...my niece, her husband and their baby came to see me on their journey across the US. It was wonderful to meet my grand niece and to see my niece mature into such a good woman, wife and mother. I am so proud of her! Just goes to show ya, there is so much to grateful for.
Yesterday was a really good day too! I felt really good - I even fixed my hair and put make-up on :) Usually I feel like...."what's the point? I feel like crap anyway" Yesterday was different - not sure why, but I am so glad it was. Goes to show ya what a difference 1 day can make!
Me
Friday, October 22, 2010
Thursday, October 7, 2010
Great site!
Well I took doc 3's advise and went searching for a Support Group in my area with absolutely no luck......YET!
In my search I did find an online group - awesome information! Real people! Real Stories!
What a relief.........I mean.........for so long I feel I have wondered through this journey somewhat alone. Please don't mis-understand.........hear my heart............I know my family and my friends have been there, and will continue to be, with their thoughts, support, jokes to make me laugh, shoulders when I need to cry and continued prayers - and I am so grateful and blessed to have such angels. I would not have the attitude I have nor the hope without those angels.
So finding this site, where people live this journey is such an added blessing & source of support - Lord knows we, living through this, need all we can get :)
In my search I did find an online group - awesome information! Real people! Real Stories!
What a relief.........I mean.........for so long I feel I have wondered through this journey somewhat alone. Please don't mis-understand.........hear my heart............I know my family and my friends have been there, and will continue to be, with their thoughts, support, jokes to make me laugh, shoulders when I need to cry and continued prayers - and I am so grateful and blessed to have such angels. I would not have the attitude I have nor the hope without those angels.
So finding this site, where people live this journey is such an added blessing & source of support - Lord knows we, living through this, need all we can get :)
Monday, October 4, 2010
Saturday, October 2, 2010
A whirlwind of emotions Part 2
So many things going through my head, my heart, my soul...............I have lived my entire life with this disease.......I try to explain it like this:
It's like having a massive growth on your face - there for all to see, you live with the complications all your life, you get used to the pain and side effects of the growth. Sometimes, even though others know it's there....you still try to put it out of your mind. Inadvertently it just becomes part of your life; part of who you are; your identity. You learn to accept it, you start to expect the pain and it is no surprise when it takes YOU over. And then all of a sudden...............you wake up, look into the mirror and it is gone. What do you do? How do you live? NOW - who are you?
Believe me.......I am so grateful! GOD has blessed me with so many things....family, friends, love, acceptance, passion, belief, honor, strength, faith and now.......a disease free liver! I wonder, sometimes, why.........why has he given me this second chance - or should I say....third, or fourth, or maybe even 5th. All I know is HE has a plan for me and I want to live that plan!
I was talking with Doc 3 on Wednesday, she asked me the question..."So what is next for Lori?" After a big, long moment of silence - I simply sighed and said "I don't know" I do know that I must remain on treatment......I do know that I want to make a difference in the lives of others.....I do know that there are so many people out there with this disease that are scared, hurting and confused. After discussing all this, she mentioned participating in a support group. I would have the opportunity to give others, like me, hope. I like that!
It's like having a massive growth on your face - there for all to see, you live with the complications all your life, you get used to the pain and side effects of the growth. Sometimes, even though others know it's there....you still try to put it out of your mind. Inadvertently it just becomes part of your life; part of who you are; your identity. You learn to accept it, you start to expect the pain and it is no surprise when it takes YOU over. And then all of a sudden...............you wake up, look into the mirror and it is gone. What do you do? How do you live? NOW - who are you?
Believe me.......I am so grateful! GOD has blessed me with so many things....family, friends, love, acceptance, passion, belief, honor, strength, faith and now.......a disease free liver! I wonder, sometimes, why.........why has he given me this second chance - or should I say....third, or fourth, or maybe even 5th. All I know is HE has a plan for me and I want to live that plan!
I was talking with Doc 3 on Wednesday, she asked me the question..."So what is next for Lori?" After a big, long moment of silence - I simply sighed and said "I don't know" I do know that I must remain on treatment......I do know that I want to make a difference in the lives of others.....I do know that there are so many people out there with this disease that are scared, hurting and confused. After discussing all this, she mentioned participating in a support group. I would have the opportunity to give others, like me, hope. I like that!
Friday, October 1, 2010
A whirlwind of emotions! Part 1
WOW WHAT A WEEK!!!
This has got to have been the BEST week of my entire treatment!!
After talking with my doc about last week's results he had me do just a half dose of the interferon again to try to get the WBC up even more. This actually was a huge blessing in disguise....you see, when the dose is cut in half - the side effects are too! Could not have happened at a better time......because 2 days after treatment my very best friend from high school flew into Salt Lake to visit me for a few days! It had been 18 years since we had seen each other last! It was wonderful to just sit and spend time with her for 4 days!!! AND FEEL NOT SO BAD!!! There was so much to catch up on.......we didn't even skip a beat.....it was like we never lost contact. Well, we never will again!! It was great to have her here for best news EVER!!! You see, on the friday before, I received a copy of my "Quantum" test for my viral load.....(this is the test I spoke about on the post dated August 12th) It didn't make sense to me because there were no real numbers in it......well Tuesday morning just before Dee & I left to take her back to the airport, my doctor called and I asked him to explain the test results and he said......are you ready!?!? He said "Lori, congratulations, you are VIRUS FREE!!!! I did it! I still have to remain on the treatment throughout it's entirety, but I have NO DETECTABLE virus in my blood! GOD IS SO VERY GOOD!!!!! I was in awe.... not quite sure how to feel, what to think, whether to believe, you name it.....the roller coaster ride of emotions had begun! You would think that my feelings about this would be an easy thing to express - but my feelings we're all over the place. Stay tuned for Part 2
This has got to have been the BEST week of my entire treatment!!
After talking with my doc about last week's results he had me do just a half dose of the interferon again to try to get the WBC up even more. This actually was a huge blessing in disguise....you see, when the dose is cut in half - the side effects are too! Could not have happened at a better time......because 2 days after treatment my very best friend from high school flew into Salt Lake to visit me for a few days! It had been 18 years since we had seen each other last! It was wonderful to just sit and spend time with her for 4 days!!! AND FEEL NOT SO BAD!!! There was so much to catch up on.......we didn't even skip a beat.....it was like we never lost contact. Well, we never will again!! It was great to have her here for best news EVER!!! You see, on the friday before, I received a copy of my "Quantum" test for my viral load.....(this is the test I spoke about on the post dated August 12th) It didn't make sense to me because there were no real numbers in it......well Tuesday morning just before Dee & I left to take her back to the airport, my doctor called and I asked him to explain the test results and he said......are you ready!?!? He said "Lori, congratulations, you are VIRUS FREE!!!! I did it! I still have to remain on the treatment throughout it's entirety, but I have NO DETECTABLE virus in my blood! GOD IS SO VERY GOOD!!!!! I was in awe.... not quite sure how to feel, what to think, whether to believe, you name it.....the roller coaster ride of emotions had begun! You would think that my feelings about this would be an easy thing to express - but my feelings we're all over the place. Stay tuned for Part 2
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