Me
Saturday, March 26, 2011
Restless
I must say the break from treatment has been such a blessing....I am loving the opportunity to focus and have some energy! Unfortunately, quite a bit of my energy is being spent on focusing on my surgery. 5 days away from today.....the day after my birthday. Don't get me wrong.....I don't want to focus on that - it just seems to be what's on my mind........ALL THE TIME! I am not so worried about the outcome or results......I know I can fight through anything! I think it's more about the surgery itself and the recovery. Not being in control, totally dependent on someone I just met and putting my life in his hands. Trusting him.......
Monday, March 21, 2011
Updates
Update from morning appt. Looks like surgery on the 31st to extract 2
of the 17 known nodules (there was only 5 last year) through open lung
biopsy. Will be In the hospital for 3 days. 2 weeks recovery. Update
from morning appt. Looks like surgery on the 31st to extract 2 of the
17 known nodules (there was only 5 last year) through open lung
biopsy. Will be In the hospital for 3 days. 2 weeks recovery.
Update from today's ultrasound and mammogram to address the enlarged
lymph nodes and they were too far back in my chest wall to see but
they did find an area present only on my right side that gained
suspicion to the radiologist. He is going to talk to my oncologist and
lung surgeon and recommend a biopsy of that as well. We are waiting
for blood test results to see if my white blood count is high enough
to endure the lung surgery safely.
Blood test is back! First time since July 1, 2010 that my WBC & RBC were in a normal range! Well there's some good news! So for surgery,I have the choice of either this Thursday (3 days from now) or next Thursday - 10 days.....I am choosing March 31st.
Update on me......I am feeling great physically! 3 weeks with no treatment has allowed me to have energy, spunk and has really given me a glimpse of how I will feel after it is all over. Emotionally - I am not sure how I am......I am scared........but I know that whatever this is - I will survive - I am a fighter - I will be strong and as Sugarland would say "It'll be alright again"
Thank you all for your love and your support.......it's what gets me through this!
you would think that taking a break from treatment would slow down the hair loss process.....NOPE!
of the 17 known nodules (there was only 5 last year) through open lung
biopsy. Will be In the hospital for 3 days. 2 weeks recovery. Update
from morning appt. Looks like surgery on the 31st to extract 2 of the
17 known nodules (there was only 5 last year) through open lung
biopsy. Will be In the hospital for 3 days. 2 weeks recovery.
Update from today's ultrasound and mammogram to address the enlarged
lymph nodes and they were too far back in my chest wall to see but
they did find an area present only on my right side that gained
suspicion to the radiologist. He is going to talk to my oncologist and
lung surgeon and recommend a biopsy of that as well. We are waiting
for blood test results to see if my white blood count is high enough
to endure the lung surgery safely.
Blood test is back! First time since July 1, 2010 that my WBC & RBC were in a normal range! Well there's some good news! So for surgery,I have the choice of either this Thursday (3 days from now) or next Thursday - 10 days.....I am choosing March 31st.
Update on me......I am feeling great physically! 3 weeks with no treatment has allowed me to have energy, spunk and has really given me a glimpse of how I will feel after it is all over. Emotionally - I am not sure how I am......I am scared........but I know that whatever this is - I will survive - I am a fighter - I will be strong and as Sugarland would say "It'll be alright again"
Thank you all for your love and your support.......it's what gets me through this!
you would think that taking a break from treatment would slow down the hair loss process.....NOPE!
Tuesday, March 15, 2011
The results
Yesterday's visit with my oncologist brought good news and some concerns.....
He read me the results....they went something like this......
"They saw limited activity in your Right Mammory Lymph Node and in some other areas under your right implant on the PET Scan. And there were no changes in the nodes in your lungs, I don't think you have Cancer - But.....I have been wrong before. So we are going to have you get an ultrasound mammogram and then take another look in 3 months..."
I responded with....."I'm confused! What happened to the Mammory Lymph Node on the LEFT? The one that was enlarged and noted on the CT Scan?"
He looked at both reports and turned to me and said....."your right!"
And then I said...."The CT Scan stated that the Nodules had multiplied and grown in size and the PET Scan says there is no change? Which test do we trust?"
He looked again and compared the results again and said "You are right!"
So here we are sitting there staring at each other................crazy silence!
He said...."OK...I will get with BOTH of these radiologists together a figure this out...." In the meantime we need to get your ultrasound done and get you scheduled for an open lung biopsy. If these nodules are multiplying and getting larger we need to see what they are and the best way to do that is to take a bit out of one."
I completely agreed.......then I came home and looked up "Open Lung Biopsy" and thought.....Oh my!!! What have I signed up for? I thought they would just do like a liver biopsy - needle aspiration. Nope.....not the case!
Even though there are more test, more waiting for results, hoping they are right....I am still able to take a break from my treatments, well most of them. I still have to take the Nupogen Treatment because even though I have been off ALL treatment for more than two weeks - my WBC are still at 1.7 (normal is 4) All other blood test levels are moving closer to normal......physically I feel GREAT!
Doing the best to keep good thoughts and a motivated attitude!
He read me the results....they went something like this......
"They saw limited activity in your Right Mammory Lymph Node and in some other areas under your right implant on the PET Scan. And there were no changes in the nodes in your lungs, I don't think you have Cancer - But.....I have been wrong before. So we are going to have you get an ultrasound mammogram and then take another look in 3 months..."
I responded with....."I'm confused! What happened to the Mammory Lymph Node on the LEFT? The one that was enlarged and noted on the CT Scan?"
He looked at both reports and turned to me and said....."your right!"
And then I said...."The CT Scan stated that the Nodules had multiplied and grown in size and the PET Scan says there is no change? Which test do we trust?"
He looked again and compared the results again and said "You are right!"
So here we are sitting there staring at each other................crazy silence!
He said...."OK...I will get with BOTH of these radiologists together a figure this out...." In the meantime we need to get your ultrasound done and get you scheduled for an open lung biopsy. If these nodules are multiplying and getting larger we need to see what they are and the best way to do that is to take a bit out of one."
I completely agreed.......then I came home and looked up "Open Lung Biopsy" and thought.....Oh my!!! What have I signed up for? I thought they would just do like a liver biopsy - needle aspiration. Nope.....not the case!
Even though there are more test, more waiting for results, hoping they are right....I am still able to take a break from my treatments, well most of them. I still have to take the Nupogen Treatment because even though I have been off ALL treatment for more than two weeks - my WBC are still at 1.7 (normal is 4) All other blood test levels are moving closer to normal......physically I feel GREAT!
Doing the best to keep good thoughts and a motivated attitude!
Monday, March 14, 2011
Today is the day!
Most of my days go by pretty quickly....You know that old saying...."there's not enough hours in the day"? Well, I must say today has WAY TOO MANY! Had to take a sleeping pill last night to even get to sleep.....then I still woke earlier that I wanted too. I was then able to get skyped into the meeting in Peurto Vallarta (you know the trip I was unable to attend) which made time fly by a little faster. Now it is just a waiting game! I get to hear from my oncologist if my whole world is turned upside down or not. As if it isn't already......
Days like today, the days that give you time to do nothing but think, make you so greatful for the things you have.....make you realize what is important in life and that if you want something out of "life" you need to go out and get it! Because who knows how long your going to be here and/or in what condition you will be in. Another mountain...............
Days like today, the days that give you time to do nothing but think, make you so greatful for the things you have.....make you realize what is important in life and that if you want something out of "life" you need to go out and get it! Because who knows how long your going to be here and/or in what condition you will be in. Another mountain...............
Thursday, March 10, 2011
Tuesday, March 8, 2011
The waiting game....
This past week has been a wonderful break from all meds. My doctor took me off everything until I am able to find out about findings from the CT scan from the oncologist. I told my husband "If this week is a prelude to how I am going to feel after my treatment is over - it will have been so worth it!" I have felt physically great - emotionally, well, that's another story. Waiting to see some one to find out if you have cancer....waiting to see when you have to go back on the poison that is supposed to cure you....hoping that your time off treatment doesn't hinder your progress....is it a reacurrance of my breast cancer from 20 years ago (I guess it can lay dormant for 30+yrs.).....is it a new cancer....what's going to happen....
Finally got into the oncologist yesterday to further evaluate the lymph nodes and nodules. I was really impressed with his demeanor and passion for results. My husband was impressed as well, he says I am good hands! After talking with the doctor and an exam, he decided to have me go in for a PET scan. He is concerned and promised me that we will find the answer to what this is. He also assured me that if it a metastasize cancer, it is most likely in the early stages and will be treatable. Today they will let me know when I go in for the PET scan - then 2 days later I will get the results.
GOD made me a strong woman. He grants me the serenity to accept the thing I cannot change, the courage to change the things I can and the wisdom to know the difference....
but patience...........well, that's another story..........please keep me in your prayers - I believe they are working :)
Finally got into the oncologist yesterday to further evaluate the lymph nodes and nodules. I was really impressed with his demeanor and passion for results. My husband was impressed as well, he says I am good hands! After talking with the doctor and an exam, he decided to have me go in for a PET scan. He is concerned and promised me that we will find the answer to what this is. He also assured me that if it a metastasize cancer, it is most likely in the early stages and will be treatable. Today they will let me know when I go in for the PET scan - then 2 days later I will get the results.
GOD made me a strong woman. He grants me the serenity to accept the thing I cannot change, the courage to change the things I can and the wisdom to know the difference....
but patience...........well, that's another story..........please keep me in your prayers - I believe they are working :)
Wednesday, February 23, 2011
Heard this song........just seems to fit
'Stand Back Up
Go ahead and take your best shot,
Let 'er rip, give it all you've got,
I'm laid out on the floor, but I've been here before,
I may stumble, yeah I might fall,
Only human aren't we all?
I might lose my way, but hear me when i say,
I will stand back up,
You'll know just the moment when Ive have enough,
Sometimes im afraid, and i don't feel that tough,
But I'll stand back up,
I've been beaten up and bruised,
I've been kicked right off my shoes,
Been down on my knees more times than youd believe,
When the darkness tries to get me,
There's a light that just wont let me,
It might take my pride, and my tears may fill my eyes,
But I'll stand back up,
I've weathered all these storms,
But i just turn them into wind, so i can fly,
What don't kill you makes you stronger,
When I take my last breath,
That's when I'll just give up,
So, go ahead to take your best shot,
Let 'er rip, give it all you've got,
You might win this round but you cant keep me down,
'Cause I'll stand back up,
And you'll know just the moment when ive had enough,
Sometimes im afraid and I dont feel that tough,
But I'll stand back up,
Youll know just the moment when ive had enough,
Sometimes I'm afraid and I dont feel that tough,
But I'll stand back up.
Go ahead and take your best shot,
Let 'er rip, give it all you've got,
I'm laid out on the floor, but I've been here before,
I may stumble, yeah I might fall,
Only human aren't we all?
I might lose my way, but hear me when i say,
I will stand back up,
You'll know just the moment when Ive have enough,
Sometimes im afraid, and i don't feel that tough,
But I'll stand back up,
I've been beaten up and bruised,
I've been kicked right off my shoes,
Been down on my knees more times than youd believe,
When the darkness tries to get me,
There's a light that just wont let me,
It might take my pride, and my tears may fill my eyes,
But I'll stand back up,
I've weathered all these storms,
But i just turn them into wind, so i can fly,
What don't kill you makes you stronger,
When I take my last breath,
That's when I'll just give up,
So, go ahead to take your best shot,
Let 'er rip, give it all you've got,
You might win this round but you cant keep me down,
'Cause I'll stand back up,
And you'll know just the moment when ive had enough,
Sometimes im afraid and I dont feel that tough,
But I'll stand back up,
Youll know just the moment when ive had enough,
Sometimes I'm afraid and I dont feel that tough,
But I'll stand back up.
Tuesday, February 22, 2011
LONG weekend..........................
This past weekend has really got me grasping for faith.............my head started to get cloudy - I am not able to carry on a conversation without trying to find the words to say what I want to say......I was also having some pressure in my chest so my doctor sent me to the ER. My heart checked out good and the ER doctor seems to think the treatment is becoming too much. The scariest thing though was when they returned with my CT scan results. I have had little nodules in my lung for about two years - they never grew or changed in any way (I get rechecks every 6 months) well they have now decided to grow and change in shape, and my lymph nodes have some rare changes happening. They are referring me to an oncologist for further evaluation. I swear if it's not one thing it is definitely another! I am trying to stay positive and keep telling myself it will be ok...listening to the song posted in an earlier post. But the truth is I AM SO TIRED OF BEING TIRED AND SO SICK OF BEING SICK!
Friday, February 11, 2011
It helps me
This song is so inspiring....It's about love, but it resonates the perfect words and passion for me to try to get through treatment and to give me hope..........
Thursday, February 10, 2011
Memory and medicine don't mix!
It is so odd how I can remember so much from before treatment.....seems like since I started, I forget things all the time! Events I have been to before - I could tell you all the details; now....they are so foggy. I am having trouble remembering who I have responded to in emails, what phone calls I have returned, who's order I need to deliver, What time my appointment is, which meds I have taken and on which days. I swear I would lose my head if it weren't attached!
Wednesday, February 9, 2011
A better day
Today is a better day physically, but emotionally I am still angry. I try to so hard to find the good in things and keep my faith strong.....but sometimes it is such a struggle. MANY times it is a struggle! Day by day......it's all I got. I know I am on the downhill slide, with only 16 weeks left but all I think about is that is 16 MORE weeks of pain, fatigue, hair loss, fevers, chills, hot spells, nausea, bone pain, confusion, memory problems, fatigue, and more fatigue! I know what I should be thinking is ONLY 16 more weeks! Then there will be no more of the side effects of treatment OR Hep C!!! I can finally live my life without that ball & chain! FREE of this virus! Unfortunately it's not that easy.........I try hard to make it look easy, I try hard to be strong, I try hard to be a support system for others in the same position. But the truth is....sometimes I feel so alone.
Tuesday, February 8, 2011
Sacrifice
The past 2 weeks have been so very hard.....
I do everything I can to try to stay positive and not give in......
Now 3 injections per week, 8 pills a day, Tylenol for the pain and even pills more for nausea. I feel like my own personal pharmacy and that is just the beginning.....
My hair falling out and the other side effects have really taken there toll this week - every day has hurt - either physically, emotionally, mentally or socially.
In the company I work with, we have a contest every year where we can earn an all expense paid trip to some exotic resort for a week in another country, for the past two years I have earned this trip for myself and my husband. Through everything I have endured with treatment, I still worked hard to earn that trip again this year even when I didn't feel like it and just wanted to crawl up in bed and cry all day.
Through all the hard work of myself and my team I did managed to earn the trip this year, however, due to my blood counts - I can't go! I hate this disease! I hate this treatment! Now, everyday, I get so mad at myself.... even though I know it is out of my control. I never though my treatment would compromise and consume so much of my life.
My grandson comes over almost everyday......I try to play with him and not let him see how I feel, but even that is so exhausting. I hate that he has to suffer too.
I just want it to be over! I have 16 more excruciating weeks left......please keep me in your prayers.
Nothing is really ever what we expect it to be.
I do everything I can to try to stay positive and not give in......
Now 3 injections per week, 8 pills a day, Tylenol for the pain and even pills more for nausea. I feel like my own personal pharmacy and that is just the beginning.....
My hair falling out and the other side effects have really taken there toll this week - every day has hurt - either physically, emotionally, mentally or socially.
In the company I work with, we have a contest every year where we can earn an all expense paid trip to some exotic resort for a week in another country, for the past two years I have earned this trip for myself and my husband. Through everything I have endured with treatment, I still worked hard to earn that trip again this year even when I didn't feel like it and just wanted to crawl up in bed and cry all day.
Through all the hard work of myself and my team I did managed to earn the trip this year, however, due to my blood counts - I can't go! I hate this disease! I hate this treatment! Now, everyday, I get so mad at myself.... even though I know it is out of my control. I never though my treatment would compromise and consume so much of my life.
My grandson comes over almost everyday......I try to play with him and not let him see how I feel, but even that is so exhausting. I hate that he has to suffer too.
I just want it to be over! I have 16 more excruciating weeks left......please keep me in your prayers.
Nothing is really ever what we expect it to be.
Monday, January 24, 2011
I am back home
As usual so much has happened since my last post......So I have been on the rescue drug for my wbc - Neupogen, No fun at all!!! My weekly injections of the Pegasys are pretty much not painful, but this....BURNS! And just for a moment.....the bone pain pretty much lingers on for a few days. We started out with 2 times a week on the Neupogen and my WBC improved tremendously! Very excited about that! So my doc thought maybe we could go to 1 time a week due to how hard this is on your body. We tried it and back down they went. So back to two times a week.
My hair loss has slowed down and my friend Lorie Nijjar (who I have been with for the past week in North Carolina) helped me glue my hair together with hair products so when we went out no one would notice as much. - Thank you Lorie!
On my way to North Carolina, I spoke at an amazing event in Atlanta. I spoke about choices and how each choice we make has the potential of changing our lives. I talked about choices I have made in the past and I spoke of the choices I, and others going through this treatment, have to make everyday. EVERYDAY we have a choice - the easy one....to quit - and the tough one....to fight. Today I choose to fight!
My hair loss has slowed down and my friend Lorie Nijjar (who I have been with for the past week in North Carolina) helped me glue my hair together with hair products so when we went out no one would notice as much. - Thank you Lorie!
On my way to North Carolina, I spoke at an amazing event in Atlanta. I spoke about choices and how each choice we make has the potential of changing our lives. I talked about choices I have made in the past and I spoke of the choices I, and others going through this treatment, have to make everyday. EVERYDAY we have a choice - the easy one....to quit - and the tough one....to fight. Today I choose to fight!
Thursday, January 13, 2011
My visit with the hairdresser
A couple days ago I went to visit my very talented, brilliant and creative hairdresser. She never even flinched when I took off my hat....she has been doing my hair for three years, so she knows how thick my hair has always been. She looked at my hair from all angles and said...."Lori, we can fix this - temporarily"
This was great news for me because this weekend I am headed to a corporate event where I will be speaking on inspiration and my confidence was depleting more and more as every hair dropped from my head.
She colored, she cut, she created and she styled.....and when I left I looked like I had more hair....less bare spots and yes.... more confidence! I didn't wear a hat all day!
When you look closely you can see the spots, and yes you probably can tell that my scalp has been stained with color.... but from a distance - everything looks great! Thank you Amanda DeRose for making me feel beautiful!
This was great news for me because this weekend I am headed to a corporate event where I will be speaking on inspiration and my confidence was depleting more and more as every hair dropped from my head.
She colored, she cut, she created and she styled.....and when I left I looked like I had more hair....less bare spots and yes.... more confidence! I didn't wear a hat all day!
When you look closely you can see the spots, and yes you probably can tell that my scalp has been stained with color.... but from a distance - everything looks great! Thank you Amanda DeRose for making me feel beautiful!
Saturday, January 8, 2011
I went shopping!
The past few days have proven to be very challenging....it started with the worst blood test results EVER! My white blood cells have fallen down to next to nothing.....so it's time for a rescue drug called Neupogen. Neupogen is a drug that helps stimulate the WBC's in your body that fight infection. Here's a link if you want to read more about the drug. So it was prescribed. Now with the new year just passing and our RX insurance changing, I was so excited because our new RX plan has a max out of pocket of $75 per prescription. If you have ever priced the meds necessary for this type of treatment - you too would be ecstatic!
Here's an example....Dec 31st my Pegasys was almost $800 per month - now it is supposed to be $75!
Dec 31st the Neupogen would have been $1500 per month (yes these figures are MY COST after insurance) - now it is supposed to be, again, $75!
Well, I went to fill the script and my insurance said we were still on the old plan, that the system had not updated....ok so I waited another day.....still the same....another day goes by and they tell me "I am so sorry ma'am, but your coverage has expired"! I just dropped the phone and sat there...........all I could think of is how am I going to come up with $6,500 (approx cost of med with no insurance) for my medication this month......and then what about next month??? I still have 144 days to go?!?!?! What in the world am I going to do? I had no idea............
I decided to jump in the shower and let the hot water just beat down on me - this always makes me feel better - except that day..........I was calming down, clearing my mind, sorting things out and felt as if I was in a better place so I turned off the water, grabbed my towel and started towel drying my hair, like usual. This time was anything but "usual"....as I looked down on the floor of the shower - I saw them.....so many of them....I shook the towel just to make sure and there more fell.......I thought, not today - not now!
I knew coming into treatment that loosing my hair was a possibility and I thought I would really be ok with it....It will grow back....it's only temporary. But when I saw that much coming out all rationalization was gone....I was ready to quit treatment! I was ready to be done!
I came to the computer to post on here and I saw a comment on a previous post where my friend had posted " YOU MADE IT" all in caps! Then I knew I couldn't quit....I had to fight through and so I am!
The next day I stayed on the insurance and was able to fill the scripts at last years plan so instead of $6500 it was about $2200. They are still looking into the RX insurance and have assured me that if our plan was supposed to be the one where the max per prescription is $75 that I would be entitled to a partial reimbursement! YAY! And yes, more hair fell out.
So friday I went shopping! I started out by myself, wondering around Kohls trying to find a hat or scarf or something......but I couldn't make a decision. I still couldn't believe I was loosing my hair. My mom called to check on me, I swear I wondered aimlessly around Kohls for at least an hour, I told her I couldn't find anything.....she said to come get her and she would look with me :) I have NEVER been a hat girl but my mom finally convinced me to try one on......I left the store with 6 different hats! LOVE THEM! Thank you momma for your support! I love you!
Here's an example....Dec 31st my Pegasys was almost $800 per month - now it is supposed to be $75!
Dec 31st the Neupogen would have been $1500 per month (yes these figures are MY COST after insurance) - now it is supposed to be, again, $75!
Well, I went to fill the script and my insurance said we were still on the old plan, that the system had not updated....ok so I waited another day.....still the same....another day goes by and they tell me "I am so sorry ma'am, but your coverage has expired"! I just dropped the phone and sat there...........all I could think of is how am I going to come up with $6,500 (approx cost of med with no insurance) for my medication this month......and then what about next month??? I still have 144 days to go?!?!?! What in the world am I going to do? I had no idea............
I decided to jump in the shower and let the hot water just beat down on me - this always makes me feel better - except that day..........I was calming down, clearing my mind, sorting things out and felt as if I was in a better place so I turned off the water, grabbed my towel and started towel drying my hair, like usual. This time was anything but "usual"....as I looked down on the floor of the shower - I saw them.....so many of them....I shook the towel just to make sure and there more fell.......I thought, not today - not now!
I knew coming into treatment that loosing my hair was a possibility and I thought I would really be ok with it....It will grow back....it's only temporary. But when I saw that much coming out all rationalization was gone....I was ready to quit treatment! I was ready to be done!
I came to the computer to post on here and I saw a comment on a previous post where my friend had posted " YOU MADE IT" all in caps! Then I knew I couldn't quit....I had to fight through and so I am!
The next day I stayed on the insurance and was able to fill the scripts at last years plan so instead of $6500 it was about $2200. They are still looking into the RX insurance and have assured me that if our plan was supposed to be the one where the max per prescription is $75 that I would be entitled to a partial reimbursement! YAY! And yes, more hair fell out.
So friday I went shopping! I started out by myself, wondering around Kohls trying to find a hat or scarf or something......but I couldn't make a decision. I still couldn't believe I was loosing my hair. My mom called to check on me, I swear I wondered aimlessly around Kohls for at least an hour, I told her I couldn't find anything.....she said to come get her and she would look with me :) I have NEVER been a hat girl but my mom finally convinced me to try one on......I left the store with 6 different hats! LOVE THEM! Thank you momma for your support! I love you!
Saturday, January 1, 2011
Wednesday, December 29, 2010
Holiday's
The holiday's were bitter sweet this year. The only time I really ever feel lonely is when I think about going through this treatment - even though I know others are going through it too, I still find myself feeling somewhat alone in this journey. I have tons of support with my friends and family but when it comes to "cure day", which has now been changed to Tuesdays, this feeling starts to linger in......
This Christmas brought about a similar feeling. This is the first Christmas ever that my children were not in their beds anxiously awaiting the arrival of "Santa". My daughter was out of state spending the holiday with her boyfriend and his family; and my son and grandson had just moved out of our home a month ago and they spent Christmas morning at his girlfriends mothers home.
So I was lost! Wondering aimlessly around the house......re-positioning the gifts under the tree....trying to keep myself busy and fight back the tears. Convincing myself that the emotional side effects of treatment are what was at play here.
About 3:00pm My son, grandson and my son's girlfriend finally showed up to open gifts and watch our traditional football game. It was a wonderful moment watching my 2 1/2 year old grandson patiently handing out all the stockings and gifts.....then going over to his pile and tearing apart all of his treasures! The look of excitement as he ripped through each package - he would hold up his gift and say "For me?!?!" and show each one to everyone there! Such joy! But there was still something missing.....my daughter. Still out of state and now stuck there due to weather. My heart was so full yet still breaking........ that feeling again it reminded me of my treatment; so bittersweet.....the virus is undetectable, however there is still 154 days left to endure the side effects. I am so greatful for the good days - I just wish there were more of them.
This Christmas brought about a similar feeling. This is the first Christmas ever that my children were not in their beds anxiously awaiting the arrival of "Santa". My daughter was out of state spending the holiday with her boyfriend and his family; and my son and grandson had just moved out of our home a month ago and they spent Christmas morning at his girlfriends mothers home.
So I was lost! Wondering aimlessly around the house......re-positioning the gifts under the tree....trying to keep myself busy and fight back the tears. Convincing myself that the emotional side effects of treatment are what was at play here.
About 3:00pm My son, grandson and my son's girlfriend finally showed up to open gifts and watch our traditional football game. It was a wonderful moment watching my 2 1/2 year old grandson patiently handing out all the stockings and gifts.....then going over to his pile and tearing apart all of his treasures! The look of excitement as he ripped through each package - he would hold up his gift and say "For me?!?!" and show each one to everyone there! Such joy! But there was still something missing.....my daughter. Still out of state and now stuck there due to weather. My heart was so full yet still breaking........ that feeling again it reminded me of my treatment; so bittersweet.....the virus is undetectable, however there is still 154 days left to endure the side effects. I am so greatful for the good days - I just wish there were more of them.
Thursday, December 9, 2010
Half Way There!
Today I received an email from my treatment provider congratulating me for being "half way there!" Week 24! It was a little depressing at first because it seems like it has been forever ago that I started. The bright side is that it is now official!!!! I am on the downhill slope! It is kinda cool that every so often I automatically get an email from them that provides realistic encouragement. Here is a link to the archives of the emails I get. Even though I know it's automated.......It still makes me feel like I am validated in how I feel and in what I am able to, or not able to, accomplish. It makes me feel "OK" with the side effects. And it makes me feel like I do have the courage to finish. It would be so easy to quit! I have faith that there is only one set of footprints and they are not mine.
Friday, December 3, 2010
All rested up!
Amazing what some sleep will do for ya! Last week my doc & I decided to try a new sleep aide and I was told to take it every day for a week! It is the fist time since treatment began than I have slept more than 5 hours at a time (the 5 hours was few and far between!) The one good thing about sleep deprivation is you don't have much of a memory :) now it is all coming back.....LOL! I have had a few distractions, however, and we all know how much I love distractions! My son is starting to have some medical problems.....We thought he was having an appendicitis, so two days ago we went to the urgent care; who sent us to the ER. There we stayed for 5 hours while they tested and CT scanned him. They decided his appendix was ok but he was showing signs of Crohn's Disease. Today we go in for more tests - please pray with me that he is ok......he has never really been sick since he was a baby. Even at 24 he is still my baby :)
Monday, November 29, 2010
Monday, November 22, 2010
Thanksgiving Week
With thanksgiving being just a few days away - I am starting to reflect more on the things I am thankful for. The list is sooooo long, but I really feel it is important to spend a few minutes on each and let GOD hear my gratitude. I also am convinced that the people in my life need to hear it as well, sometimes I know I don't always show it. So over the next few days I will be editing this blog post to include different things I am thankful for.
11-22 There are so many things! Yesterday I reflected alot on how grateful I am to have Jesus in my life.....Merilyn Pullen and her children (Star Rick Ron & Cindy) introduced me to my lord & savior.
11-23 Family was very heavy on my heart today....I come from a family that is spread out all over the country, but it only takes a moment with my eyes closed to feel their presence. I honor each and every one for their love and support. My sister, Wendy - as you all know from previous posts - I don't think I would have had the strength to even start treatment without her - I'm not even sure my brothers realize the determination they give me; they are my BIG brothers; I always want to make them proud - Brad & Cony; their wives - Gina & Diane are the angels on my shoulders. My mother, Colleen - She is my daily dose of reality, she keeps me grounded and goes out of her way to bring about some kind of normalcy into my life. My husband - my ROCK! His continued support and unconditional love inspire me, many times his shoulders are soaked with my tears, he holds me through the side effects, and continuously encourages me to move forward - together. My grown children - Joey and Ashley - They empower me - with hope and belief that there is nothing I can't do - they keep me motivated. My grandson - Jaxon - my sunshine, my why, my inspiration - he keeps me laughing, positive; his love gives me the will to take the next treatment. Thank you GOD, for my family!
11-24 Giving Thanks - I am so blessed!
11-25 My team - all 267 of them! GOD has blessed me with such dynamic women & men to share the hopes and dreams of becoming something more! I am grateful for the personal growth and the relationships we have all built together - irreplaceable!
11.26 My Friends - Today I get to hop on a plane to see 2 of my dearest friends - Katie & Becca - even though there will be work involved there will also be plenty of time to hug, hope and pray together! I am hoping to have the opportunity to see some family while I am there too! I have recently been visited by another dear friend from high school - Dee - Having the opportunity to be in her presence was definitely a road down memory lane! I am so grateful for her and the time we shared! We laughed and cried (even though she won't admit it :)) And then there is Lorie - Lorie keep me positive and every cure day (Thursday) she put's something in my email box to make me smile. I am so grateful for the dear friends I have - Thank you Jesus for bringing such amazing people into my life!
There is so much to be thankful for in my....... I am very blessed!
11-22 There are so many things! Yesterday I reflected alot on how grateful I am to have Jesus in my life.....Merilyn Pullen and her children (Star Rick Ron & Cindy) introduced me to my lord & savior.
11-23 Family was very heavy on my heart today....I come from a family that is spread out all over the country, but it only takes a moment with my eyes closed to feel their presence. I honor each and every one for their love and support. My sister, Wendy - as you all know from previous posts - I don't think I would have had the strength to even start treatment without her - I'm not even sure my brothers realize the determination they give me; they are my BIG brothers; I always want to make them proud - Brad & Cony; their wives - Gina & Diane are the angels on my shoulders. My mother, Colleen - She is my daily dose of reality, she keeps me grounded and goes out of her way to bring about some kind of normalcy into my life. My husband - my ROCK! His continued support and unconditional love inspire me, many times his shoulders are soaked with my tears, he holds me through the side effects, and continuously encourages me to move forward - together. My grown children - Joey and Ashley - They empower me - with hope and belief that there is nothing I can't do - they keep me motivated. My grandson - Jaxon - my sunshine, my why, my inspiration - he keeps me laughing, positive; his love gives me the will to take the next treatment. Thank you GOD, for my family!
11-24 Giving Thanks - I am so blessed!
11-25 My team - all 267 of them! GOD has blessed me with such dynamic women & men to share the hopes and dreams of becoming something more! I am grateful for the personal growth and the relationships we have all built together - irreplaceable!
11.26 My Friends - Today I get to hop on a plane to see 2 of my dearest friends - Katie & Becca - even though there will be work involved there will also be plenty of time to hug, hope and pray together! I am hoping to have the opportunity to see some family while I am there too! I have recently been visited by another dear friend from high school - Dee - Having the opportunity to be in her presence was definitely a road down memory lane! I am so grateful for her and the time we shared! We laughed and cried (even though she won't admit it :)) And then there is Lorie - Lorie keep me positive and every cure day (Thursday) she put's something in my email box to make me smile. I am so grateful for the dear friends I have - Thank you Jesus for bringing such amazing people into my life!
There is so much to be thankful for in my....... I am very blessed!
Sunday, November 14, 2010
November 14th
Well, Good news! I got my blood work back and my white cells are on the move upward! Normally on my CBC I have 5 or 6 markers, on average, out of the norm - this time only three! I missed a couple doses of the Ribavirin last week so I am pretty sure that had something to do with it, never the less, I felt pretty good! I really wish this treatment could be like every other day instead of daily......one day without the Ribaviron sure makes for a good day! Then, of coarse, reality hits me......Treatment is meant to be everyday.....That's the only way it works.....If I want to stay "non-detectable" I have to take my treatments....... Sucks for now but it will be worth it in the end....Remember Lori, you are fighting for your life!
I felt so good the past few weeks that I neglected some of the most important things to me.....this blog for 1! And I haven't been in the chat rooms either to help support others going through the same things. I am not sure why it happened this way, maybe I just needed a mental vacation for a moment - to try to maintain some sanity and separate myself from the reality of my disease.
I am about half way through my course of treatment and as I talk to others going through the same - they say this is common. They say...."we have to face reality on a daily basis, if we don't then we get lax in our treatments and the disease is more likely to return."
That is all I have for now..........
I felt so good the past few weeks that I neglected some of the most important things to me.....this blog for 1! And I haven't been in the chat rooms either to help support others going through the same things. I am not sure why it happened this way, maybe I just needed a mental vacation for a moment - to try to maintain some sanity and separate myself from the reality of my disease.
I am about half way through my course of treatment and as I talk to others going through the same - they say this is common. They say...."we have to face reality on a daily basis, if we don't then we get lax in our treatments and the disease is more likely to return."
That is all I have for now..........
Friday, October 22, 2010
Time flies!
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!
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!
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
Thursday, September 23, 2010
Yesterday's donation
Every Wednesday, like clockwork, I give a tube of blood for them to test to see how the treatment is effecting my body.
Last week, my white & red counts were so low that my Liver Doctor cut my treatment dose in half in hopes that my blood counts would rise on their own without having to add additional treatments to keep them stable.
Not sure if half the treatment brings about half the results but the good thing is there was a BIG difference in the side effects! I ended up with a pretty good week.
Anyhow, yesterday I went in and, again, they sucked out another tube of blood, but not without missing a vein here and there and digging around for a second or two trying to get one to cooperate.
How ironic is this......We walk in the office & wait for our name to be called. Then we jump right up when our name is called, and anxiously walk right in the Lab to find ourselves sitting in their cold little plastic seats. We sit there as still as we can patiently while they push around on our arms & hands to try and find a vein - once they think they have found one - we then allow them to stick a needle in us, hopefully only once or twice, and let them remove our blood. We en-dour the anxiety, the chills, the sweats, the nausea, the pain and then......once it is over.......not only do we pay them for this; we also thank them!
Ok....so my test results from yesterday came over on fax machine just this moment and the news is better!! Cutting the dose in half did bring up my white blood count, from 1.7 last week to 2.1 (THANK GOD!) It is still low, but not as low.....normal ranges for your white blood count at this lab (yes, they all differ) is 4.0 - 10.5 - So raising it up .4 is a huge deal!!!!! My red blood cells are continuing to decline. So we will see what the doc has to say about that - he calls me every Cure Day.
Speaking of every "Cure Day"
One of my dearest friends, Lorie really tries to make my "Cure Day" more bearable. When I check my email on Thursday mornings there is always something in my inbox from her. It is always something that makes me smile....here are some examples of what she sends me:)
Today she sent me an e-card that said...
HAPPY CURE DAY!
1 Week closer!
Thank you Lorie - you help me so much to stay strong and move forward!
Last week, my white & red counts were so low that my Liver Doctor cut my treatment dose in half in hopes that my blood counts would rise on their own without having to add additional treatments to keep them stable.
Not sure if half the treatment brings about half the results but the good thing is there was a BIG difference in the side effects! I ended up with a pretty good week.
Anyhow, yesterday I went in and, again, they sucked out another tube of blood, but not without missing a vein here and there and digging around for a second or two trying to get one to cooperate.
How ironic is this......We walk in the office & wait for our name to be called. Then we jump right up when our name is called, and anxiously walk right in the Lab to find ourselves sitting in their cold little plastic seats. We sit there as still as we can patiently while they push around on our arms & hands to try and find a vein - once they think they have found one - we then allow them to stick a needle in us, hopefully only once or twice, and let them remove our blood. We en-dour the anxiety, the chills, the sweats, the nausea, the pain and then......once it is over.......not only do we pay them for this; we also thank them!
Ok....so my test results from yesterday came over on fax machine just this moment and the news is better!! Cutting the dose in half did bring up my white blood count, from 1.7 last week to 2.1 (THANK GOD!) It is still low, but not as low.....normal ranges for your white blood count at this lab (yes, they all differ) is 4.0 - 10.5 - So raising it up .4 is a huge deal!!!!! My red blood cells are continuing to decline. So we will see what the doc has to say about that - he calls me every Cure Day.
Speaking of every "Cure Day"
One of my dearest friends, Lorie really tries to make my "Cure Day" more bearable. When I check my email on Thursday mornings there is always something in my inbox from her. It is always something that makes me smile....here are some examples of what she sends me:)
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HAPPY CURE DAY!
1 Week closer!
Thank you Lorie - you help me so much to stay strong and move forward!
Monday, September 20, 2010
It is hubby's birthday!
Happy Birthday today to my amazing husband! Today he turns 47! I have had the honor of spending the past 14 of those years married to him! We have, together, shared so much! Tons of laughs and very few tears, we have shared stories, experiences, dreams, decisions, complications, business's, let downs, accomplishments.......so many things! We are so blessed for there is one thing we do not share.......the hepatitis C virus.
I have been fortunately blessed to have not shared this virus with ANY of my loved ones. I am so grateful to GOD for this blessing he has given me......and them!
I could not imagine what it would be like to watch someone I love have to en-dour treatment of this horrible disease. Just thinking about how my treatment might be affecting him and those around me brings about a completely different perspective for me.
Many times while on treatment you think to yourself.......why me? When am I going to get better? What side effects are going to complicate my world today? What if it doesn't work?
But this new perspective makes me realize this.....my loved ones are going through an enormous amount of grief as well...
As a Wife, Mother, Daughter, Sister, Friend and Grandmother - I am always saying.....if I could save you the pain or discomfort; I would. In retrospect, it has always hurt me more to see the ones I love suffer than my own potential suffering. So now when I think of what I would do....how I would feel...what words I would say.... if it were someone else whom I care about going through this and I am dumbfounded. I have no idea HOW I could handle it.
Anyway..... I just want to thank those who love me and are continually supporting me through this and please know....I know it's not easy for you either.........
I have been fortunately blessed to have not shared this virus with ANY of my loved ones. I am so grateful to GOD for this blessing he has given me......and them!
I could not imagine what it would be like to watch someone I love have to en-dour treatment of this horrible disease. Just thinking about how my treatment might be affecting him and those around me brings about a completely different perspective for me.
Many times while on treatment you think to yourself.......why me? When am I going to get better? What side effects are going to complicate my world today? What if it doesn't work?
But this new perspective makes me realize this.....my loved ones are going through an enormous amount of grief as well...
As a Wife, Mother, Daughter, Sister, Friend and Grandmother - I am always saying.....if I could save you the pain or discomfort; I would. In retrospect, it has always hurt me more to see the ones I love suffer than my own potential suffering. So now when I think of what I would do....how I would feel...what words I would say.... if it were someone else whom I care about going through this and I am dumbfounded. I have no idea HOW I could handle it.
Anyway..... I just want to thank those who love me and are continually supporting me through this and please know....I know it's not easy for you either.........
Wednesday, September 15, 2010
It's a beatiful day!
I love my mornings.....each morning or should I say once the daylight shines through the windows..... Jaxon, my grandson, wakes up and plays for a few minutes in his bed. He starts to talk louder and louder and eventually you will hear "Grandma" "Grandma" "I'm ready!"
I will go in his room and he is standing in his bed with his arms open wide and with a huge smile on his face he say's "It's a beautiful day!" He ALWAYS brings a smile to my face! He is my rock through this treatment....it is moments like these that keep me moving forward. Lord knows there are many moments that try to hold me back.
One of those "moments", if you will, is the struggle I am having with the doctors. I now have 3.
1. My Family doctor
2. My Liver doctor
3. My Psychologist - a must have with the side effects!!
All 3 seem to think I need to be on different medication for some of the different side effects.
I wish I could sit all three of them down in a room together so they can all be on the same page!
Ultimately here's what happens......
I see my 1. doc for a check-up, he asks how treatment is going. I tell him, he prescribes me a new medication and sets me up with doc 3. I meet with her the next day and she recommends a different prescription to doctor 1. - THEN she goes on vacation for 10 days. Doctor 1. has questions of doc 3, but can't ask her due to her trip but STILL has not returned my call inquiring about the medication he wanted to put me on. So here I sit on the meds that neither of them think is the right one. Now doc 2. wants to add medication to my current 9 pills a day, but may not need to if Doc 1 & 3 get on the same page. Until then.......here I sit.......dealing with the side effects. Trouble focusing, trouble concentrating, nausea (oh yeah...there's another pill for that!), headaches (and another one for that), fatigue, depression, confusion, FRUSTRATION!
The one thing I am sure of; the one thing I can count on to move me forward in my treatment today.....is that "it's a beautiful day!"
I will go in his room and he is standing in his bed with his arms open wide and with a huge smile on his face he say's "It's a beautiful day!" He ALWAYS brings a smile to my face! He is my rock through this treatment....it is moments like these that keep me moving forward. Lord knows there are many moments that try to hold me back.
One of those "moments", if you will, is the struggle I am having with the doctors. I now have 3.
1. My Family doctor
2. My Liver doctor
3. My Psychologist - a must have with the side effects!!
All 3 seem to think I need to be on different medication for some of the different side effects.
I wish I could sit all three of them down in a room together so they can all be on the same page!
Ultimately here's what happens......
I see my 1. doc for a check-up, he asks how treatment is going. I tell him, he prescribes me a new medication and sets me up with doc 3. I meet with her the next day and she recommends a different prescription to doctor 1. - THEN she goes on vacation for 10 days. Doctor 1. has questions of doc 3, but can't ask her due to her trip but STILL has not returned my call inquiring about the medication he wanted to put me on. So here I sit on the meds that neither of them think is the right one. Now doc 2. wants to add medication to my current 9 pills a day, but may not need to if Doc 1 & 3 get on the same page. Until then.......here I sit.......dealing with the side effects. Trouble focusing, trouble concentrating, nausea (oh yeah...there's another pill for that!), headaches (and another one for that), fatigue, depression, confusion, FRUSTRATION!
The one thing I am sure of; the one thing I can count on to move me forward in my treatment today.....is that "it's a beautiful day!"
Wednesday, September 8, 2010
Where have I been?
I guess the best answer to that question is........in interferon land.
My sister called me yesterday and asked me "Lori, why haven't you been blogging for the past few weeks" I really didn't have a great answer to that question, I had many excuses running through my head; but no real answer. I told her that I really hadn't had much positive to say at the moment about treatment - she reminded me that treatment is not always positive and that my words of truth may someday help another searching for support and understanding......that was enough for me to start hitting the keys on the keyboard again!
I know my purpose in life is to make a positive impact on others and sometimes it's the truth about the obstacles in life and treatment that makes the most positive impact.
So here's the truth............
The last two weeks have been so challenging! The side effects are real, and yes - they happen to everyone. I thought in the beginning of treatment that I would be an exception - I have been a fighter, a survivor and over-achiever for many years, and really thought this experience would be no different - challenging? Yes - but nothing I couldn't handle. I thought the side effects everyone speaks of were all in people minds....and I had mind over matter!! My treatment was going to be different.....I was going to choose to be, as I always say, "Alive, Alert, Awake - Enthusiastic!" Hit it head on! Come out victorious! Be the exception to the rule!
Well, I was right in a way....my treatment is very different.....very different than I thought.....
I still to choose to be, as I always say, "Alive, Alert, Awake - Enthusiastic!" I am currently hitting it head on! I will come out victorious and be the exception to the rule! But I will have to deal with and do my best to overcome the very real and sometimes debilitating side effects.
I think the most difficult side effects are the fatigue and the results of that said fatigue.....depression and mood swings. No matter how much positivity I try to maintain - the true fact that everyone, who's red & white blood cells drop way below normal, will have fatigue and days of not feeling well or even wanting to get of bed. The true fact that eating a meal wears you completely out is not an easy realization for some one like me. But I have to face the fact that this it is my reality and it will be for a long time....BUT.....one day it will be over and I will be victorious! I must find the energy to continue this fight in spite of how I feel and remember that this too shall pass.
Here is a link to learn more on side effects
In the beginning I thought my body will adjust and treatment will get easier - the real truth is.....your body does not ever, nor is it supposed, to get "used to" Interferon or Ribaviron.
I know I have a long journey ahead of me but I have to maintain my belief that GOD has put me here for a reason....in this exact place at this exact time, for his own reasons and I must trust in HIM to show me the way through.
My sister called me yesterday and asked me "Lori, why haven't you been blogging for the past few weeks" I really didn't have a great answer to that question, I had many excuses running through my head; but no real answer. I told her that I really hadn't had much positive to say at the moment about treatment - she reminded me that treatment is not always positive and that my words of truth may someday help another searching for support and understanding......that was enough for me to start hitting the keys on the keyboard again!
I know my purpose in life is to make a positive impact on others and sometimes it's the truth about the obstacles in life and treatment that makes the most positive impact.
So here's the truth............
The last two weeks have been so challenging! The side effects are real, and yes - they happen to everyone. I thought in the beginning of treatment that I would be an exception - I have been a fighter, a survivor and over-achiever for many years, and really thought this experience would be no different - challenging? Yes - but nothing I couldn't handle. I thought the side effects everyone speaks of were all in people minds....and I had mind over matter!! My treatment was going to be different.....I was going to choose to be, as I always say, "Alive, Alert, Awake - Enthusiastic!" Hit it head on! Come out victorious! Be the exception to the rule!
Well, I was right in a way....my treatment is very different.....very different than I thought.....
I still to choose to be, as I always say, "Alive, Alert, Awake - Enthusiastic!" I am currently hitting it head on! I will come out victorious and be the exception to the rule! But I will have to deal with and do my best to overcome the very real and sometimes debilitating side effects.
I think the most difficult side effects are the fatigue and the results of that said fatigue.....depression and mood swings. No matter how much positivity I try to maintain - the true fact that everyone, who's red & white blood cells drop way below normal, will have fatigue and days of not feeling well or even wanting to get of bed. The true fact that eating a meal wears you completely out is not an easy realization for some one like me. But I have to face the fact that this it is my reality and it will be for a long time....BUT.....one day it will be over and I will be victorious! I must find the energy to continue this fight in spite of how I feel and remember that this too shall pass.
Here is a link to learn more on side effects
In the beginning I thought my body will adjust and treatment will get easier - the real truth is.....your body does not ever, nor is it supposed, to get "used to" Interferon or Ribaviron.
I know I have a long journey ahead of me but I have to maintain my belief that GOD has put me here for a reason....in this exact place at this exact time, for his own reasons and I must trust in HIM to show me the way through.
Saturday, August 14, 2010
New news!!!
After my last conversation with my doctor I was so excited!!! I decided to start keeping track of my progress too! I asked my doctors office to start faxing me the results - I was so proud of my reduction in viral load!! I anxiously awaited the fax to come through...........when I received it the numbers didn't quite match what he had told me my viral load had reduced to, so I called him and left a message for him to call me back. When he called I was on my way to pick up my sister from the airport, and almost missed the exit when he confirmed my findings! I was elated when i originally spoke to him about my new viral load results that I mis-understood him......I thought he said they had reduced to 400,000 but I was wrong....HE SAID 4,000!!!! OH MY STARS!! I am so far ahead of the norm! I am so going to beat this thing! It is news like this that makes the next shot and the next dose of medications so worth it!
Thursday, August 12, 2010
Believe
Monday was a really busy day for me, our company had just launched new products and I was out showing them to the world :) I finally landed at my favorite Nail Salon for my appointment. I was talking with my nail tech about how the fatigue was really starting to get to me and how I sometimes wonder.....is it all just too much?.... and my phone rang. Normally I would simply let it go to voice-mail while at my appointment but this time it was my doctor. About a week ago, I had a ton of blood-work done to see the what levels the disease is currently detected in my blood, how my body is reacting to the treatments, all basically to see if the treatment is working and how the treatment is effecting everything else in my body. So when I saw that it was Eric, my doctor, calling I answered the call. He told me that my viral load in the beginning was over 1.4 million and after only 6 weeks of treatment, it had dropped to around 400,000! The white blood count was holding steady at 1.8 (should be at 5+) and my red blood cells were within normal range! My nail tech told the other ladies "Lori's on the phone with her doctor and I think she's getting good news" You would not believe how excited everyone was in that nail salon! The Ladies of "The Nail Jail" have been a huge support to me! They were in tears right along with me :)
Just really goes to show you that even on the days you just wanna quit........the days it seems like it is just too much.......the days you wonder "is it really worth it" - You have to continue to believe..........believe that GOD has a purpose for you. Believe that there is a reason you are going through this and believe that you will be a better person for it.
Just really goes to show you that even on the days you just wanna quit........the days it seems like it is just too much.......the days you wonder "is it really worth it" - You have to continue to believe..........believe that GOD has a purpose for you. Believe that there is a reason you are going through this and believe that you will be a better person for it.
Monday, August 9, 2010
Yesterday
Yesterday was such a great day! My hubby went to church with Jaxon and i, it was a great service! Jaxon was somewhat hesitant to let Pappa leave the 2-3 yr old room, but he eventually did.
The music was awesome as usual, and again the sermon was Identity theft.... this time the Pastor spoke of the difference between the way we want the world to see us and the way GOD wants us to be seen. I thought it was great! It reminded me of how much I worry about what people think about my disease - how I got it - how long I have had it - how bad it is....sometimes I feel like a leper when people ask about it. In the pastor's sermon, he spoke of not letting how other think or feel determine our destiny. We should always be focusing on what Jesus thinks and feels about us. steadily moving in the direction of the image of GOD.
After church Pappa took us for a ride to see the elk, he and Jaxon had a wonderful time feeding them....it is so different when you see a domestic Elk like that - one that will actually take food from your hands.
I am finding that the side effects have a mind of their own.....in the beginning i was a slave to Tylenol and now I haven't needed any in days! This is a good thing! I am running out of energy fast now, however. That really wouldn't be so bad if I could sleep longer than a few hours at a time. I think everytime one of the side effects get better, another takes it's place.
The music was awesome as usual, and again the sermon was Identity theft.... this time the Pastor spoke of the difference between the way we want the world to see us and the way GOD wants us to be seen. I thought it was great! It reminded me of how much I worry about what people think about my disease - how I got it - how long I have had it - how bad it is....sometimes I feel like a leper when people ask about it. In the pastor's sermon, he spoke of not letting how other think or feel determine our destiny. We should always be focusing on what Jesus thinks and feels about us. steadily moving in the direction of the image of GOD.
After church Pappa took us for a ride to see the elk, he and Jaxon had a wonderful time feeding them....it is so different when you see a domestic Elk like that - one that will actually take food from your hands.
I am finding that the side effects have a mind of their own.....in the beginning i was a slave to Tylenol and now I haven't needed any in days! This is a good thing! I am running out of energy fast now, however. That really wouldn't be so bad if I could sleep longer than a few hours at a time. I think everytime one of the side effects get better, another takes it's place.
Saturday, August 7, 2010
My Sister
I am so excited!! My sister is coming to see me :) She is so funny.....the will arrive on "Cure Day" (Thursday) so she wants me to wait to do my treatments until she gets here so she can give it to me! I told her she was crazy! I think she just wants to stick a needle in me to get back at me for some things I did to her as a very small child. :)
She is not the only one who has asked me this......here's how I feel about it....
When someone other than myself gives me the treatments, I feel like a patient.....like I need someone else to take care of me - treat me....
When I do it myself, I feel more in control of my future.....I feel like I am in control of my disease. It helps me to stay positive and keeps me having a good outlook - I need as much of that as I can get! A bit of the depression is starting to set in.....the good thing about that is the fact that I can see it and am very aware of the consequences that come along with that. I am doing everything I can to stay positive and my sister coming to visit me is the perfect medicine and this point!
She is not the only one who has asked me this......here's how I feel about it....
When someone other than myself gives me the treatments, I feel like a patient.....like I need someone else to take care of me - treat me....
When I do it myself, I feel more in control of my future.....I feel like I am in control of my disease. It helps me to stay positive and keeps me having a good outlook - I need as much of that as I can get! A bit of the depression is starting to set in.....the good thing about that is the fact that I can see it and am very aware of the consequences that come along with that. I am doing everything I can to stay positive and my sister coming to visit me is the perfect medicine and this point!
3 AM
Seems my internal clock has decided that 3am. is the best time for me to wake......doesn't matter what time I go to sleep :)
So I must make the best of it! As I sit here in the dark, I am contemplating all the good things about 3am....
1. It is definitely time for me to enjoy that first cup of coffee completely uninterrupted!
2. I can catch up on cleaning out my inbox.
3. The peace & serenity of listening to the silence of the night allows me to reflect on my blessings.
4. I can exhale..............
So I must make the best of it! As I sit here in the dark, I am contemplating all the good things about 3am....
1. It is definitely time for me to enjoy that first cup of coffee completely uninterrupted!
2. I can catch up on cleaning out my inbox.
3. The peace & serenity of listening to the silence of the night allows me to reflect on my blessings.
4. I can exhale..............
Monday, August 2, 2010
Home from Chicago!
WOW What an amazing trip!!!
From the moment I arrived to the moment I left I was so VERY blessed!!
Many of my peers were there letting me know of their prayers and support for me!
AND.....there's more!!!
The medication for the burning in my mouth - WORKED! I was feeling so much better within a day or so!! It was wonderful to be pain free and able to taste my food!!!
I was somewhat concerned about doing my treatment while in Chicago but it worked out very well - Not much for side effect this time - I think I was so excited and the adrenalin in my body from seeing everyone and learning about all the new products and opportunities to make a difference was kicking in! There were moments that I felt like a MAC truck hit me but they were only moments!
One of the best things that happened was an email I received from one of my sister-in-laws. Here is what she said....."I read a book recently about angels. It said that Mary the mother of Jesus, having made herself visible to the children in the village of Medjugorje in Bosnia, told the children, "It is very important to pray for others, because when you pray for someone, an angel goes and sits on the shoulder of that person." At your worst moments of doubt and pain, visualize an angel on your shoulder because many will be praying for you - including me" Thank you Gina....you have no idea what this meant to me :) I love you!
From the moment I arrived to the moment I left I was so VERY blessed!!
Many of my peers were there letting me know of their prayers and support for me!
AND.....there's more!!!
The medication for the burning in my mouth - WORKED! I was feeling so much better within a day or so!! It was wonderful to be pain free and able to taste my food!!!
I was somewhat concerned about doing my treatment while in Chicago but it worked out very well - Not much for side effect this time - I think I was so excited and the adrenalin in my body from seeing everyone and learning about all the new products and opportunities to make a difference was kicking in! There were moments that I felt like a MAC truck hit me but they were only moments!
One of the best things that happened was an email I received from one of my sister-in-laws. Here is what she said....."I read a book recently about angels. It said that Mary the mother of Jesus, having made herself visible to the children in the village of Medjugorje in Bosnia, told the children, "It is very important to pray for others, because when you pray for someone, an angel goes and sits on the shoulder of that person." At your worst moments of doubt and pain, visualize an angel on your shoulder because many will be praying for you - including me" Thank you Gina....you have no idea what this meant to me :) I love you!
Wednesday, July 28, 2010
Headed to Chicago!!
I am so excited about going to Chicago today that sleep was sparse last night - up & down!! Just like my white blood count! Doc tells me yesterday that my white count fell down this time below 2. So we watch and wait.......I should find out more about it on Monday when we test again.
I woke up the other day with my mouth on fire....one of the side effects of the interferon is sores & sensitivity in your mouth and throat. It feels so weird to walk around feeling like you just took a big swig of Tabasco Sauce! I don't have much for taste buds at the moment either. I have burning from my lips all the way down to the bottom of my throat even when swallowing water.....the only thing that makes it feel better is ice-cream :) I know - what an excuse huh? My doctor had me go to the pharmacy yesterday to pick up this concoction of medications that numb the mouth and throat as well as help them heal, I swish and swallow three times a day - the only problem with it is it only numbs for about 30 minutes. But boy do I love those 30 minutes :).
I head out to Chicago today to go to my companies convention! I am so excited to see everyone again!
I woke up the other day with my mouth on fire....one of the side effects of the interferon is sores & sensitivity in your mouth and throat. It feels so weird to walk around feeling like you just took a big swig of Tabasco Sauce! I don't have much for taste buds at the moment either. I have burning from my lips all the way down to the bottom of my throat even when swallowing water.....the only thing that makes it feel better is ice-cream :) I know - what an excuse huh? My doctor had me go to the pharmacy yesterday to pick up this concoction of medications that numb the mouth and throat as well as help them heal, I swish and swallow three times a day - the only problem with it is it only numbs for about 30 minutes. But boy do I love those 30 minutes :).
I head out to Chicago today to go to my companies convention! I am so excited to see everyone again!
Sunday, July 25, 2010
Day 25
Church was good today and Jaxon is getting better at playing with the kids without me :) He is such a funny boy.......He walks up to everyone and waves his little hand and say "hiiiiiii" "how ya doin?" so dang cute!! He is constantly putting a smile on my face :)
The sermon today was about identity theft.....How "life" steals your true identity from you.....the identity GOD gives you before birth - I could so relate!! It was also about how to get your identity back - we have such a forgiving GOD! GOD is good all the time!
The sermon today was about identity theft.....How "life" steals your true identity from you.....the identity GOD gives you before birth - I could so relate!! It was also about how to get your identity back - we have such a forgiving GOD! GOD is good all the time!
Saturday, July 24, 2010
Who Moved My Cheese?
This book, by Spencer Johnson, MD. was recommended to me a couple years ago by my Sister- In- Law and I have finally picked it up! I am excited to start the reading today! The book is about change and ways to become successful with it. Starting this treatment has created quite the change in my life and in the lives of those around me. I am hoping this book will shed some light on "Who Moved My Cheese" and why!
Thursday, July 22, 2010
Cure day!
WOW!! Today sure got here fast!
It has been a really hard week! Migraines, Emergency Room, Nausea, Body aches....you name it!
Everyday this past week consisted of one thing or another or all of the above!! Sometimes it seems as if just when I start to feel good.....it's time for another shot. I hope my body starts to get used to this soon! Anyway..... There is some good news :) My white blood count is starting to rise again! YEAH! AND..... my doctor asked me to come in today and he gave me the needles for the two shots I had left & gave me more Pegasys! This is really good news because we still haven't figured out how we are going to pay the co-payment, so we have bought a little more time - Thanks Doctor Eric! Yes, my doctor and my husband have the same name :) (which to me is a really good sign!)
While I was sick this week, some people really stepped up and helped me out.....Lorie Nijjar jumped right in and trained on my conference call - Thank you Lorie! She also grouped together with some amazing prayer warriors for me :) I got emails and phone calls, voice & text messages from so many of my "For Every Home" friends & family - you know who you are:) ......Thank you all for thinking of me! And then there was my sister (my rock!).....who let me cry on her shoulder, and re-assured me that everything was going to be ok....I love you Susa!!
This treatment, in some ways, is not near as easy as I thought it would be - but then in other ways, it is simpler that I thought. It is HARD dealing with the side effects - but one look at my grandbaby (my gift from GOD) and it is so EASY to do my next treatment.
It has been a really hard week! Migraines, Emergency Room, Nausea, Body aches....you name it!
Everyday this past week consisted of one thing or another or all of the above!! Sometimes it seems as if just when I start to feel good.....it's time for another shot. I hope my body starts to get used to this soon! Anyway..... There is some good news :) My white blood count is starting to rise again! YEAH! AND..... my doctor asked me to come in today and he gave me the needles for the two shots I had left & gave me more Pegasys! This is really good news because we still haven't figured out how we are going to pay the co-payment, so we have bought a little more time - Thanks Doctor Eric! Yes, my doctor and my husband have the same name :) (which to me is a really good sign!)
While I was sick this week, some people really stepped up and helped me out.....Lorie Nijjar jumped right in and trained on my conference call - Thank you Lorie! She also grouped together with some amazing prayer warriors for me :) I got emails and phone calls, voice & text messages from so many of my "For Every Home" friends & family - you know who you are:) ......Thank you all for thinking of me! And then there was my sister (my rock!).....who let me cry on her shoulder, and re-assured me that everything was going to be ok....I love you Susa!!
This treatment, in some ways, is not near as easy as I thought it would be - but then in other ways, it is simpler that I thought. It is HARD dealing with the side effects - but one look at my grandbaby (my gift from GOD) and it is so EASY to do my next treatment.
Sunday, July 18, 2010
Been a few days
Oh my stars!! So much has happened in the past few days.....not sure where to begin.....
Let's start with PANIC TIME!!
Wednesday....Every Wednesday I go have blood work done to see how my red cells, white cells, ect....are doing and as I am getting ready for this, I call the pharmacy to see if they had heard yet from the Prescription assistance program in regards to my almost $800 per month co-pay. They have not yet approved it....OK it's Wednesday.....I do my treatments on Thursday.....I have no more Pegasys.....I DON'T have $800 to pay for the shots! I called my doctor and he didn't have any extra samples - I was just kicking myself for day1....remember, the wasted shot? I was so upset, my mom told me to go get a massage (my son had given me some free massages to use during treatment) so I make the appointment do attempt to de-stress....the therapist was great!
I felt so much better afterward. I got out to my car and noticed that I had missed a call from the doc's office......they found some samples for me! I was so excited! I had to drive about 30 miles to go get them but that was ok!! I went in and received the box of shots from the nurse and was so far on cloud nine that I didn't even look in the box!
On Thursday afternoon I received a call from the Doctor.....White count is falling already. So we are going to continue treatment and monitor more closely. The good thing is that now they have an additional treatment they can put you on to assist in raising white blood cells. They didn't have that 10 years ago for Hep C patients. We just have to get pre-approval from my insurance. So Thursday evening I am getting ready to take the treatment, I opened the box and noticed there were 3 weeks worth of pre-loaded pegasys shots! WITH NO NEEDLES! Panic again!!!! Dr office closed!! What am I going to do? Then I remembered the day 1 shot that never got used.....Luckily I still had the needle from that shot! WHEW!!! I tell ya.....my emotions at this point are on a roller-coaster ride!
Still not sleeping well at this point - a few hours a night. I am totally exhausted. I had a very busy weekend as well - two vendor shows! Thank GOD Wendy, Randi and Stacie were there to take up my slack on the longest one (Draper Days - a two day show)....I am so grateful for each of them :) And my Baby Girl went with me to the other......and she made a sale!!!
Here it is Sunday night and I was able to get quite a bit of rest today! After church Jaxon & I took a nap and then I took another short nap and off to the massage therapist. My son was a member of a local Massage Envy and he had 13 prepaid massages that he gifted to me to help releive the stress of the side effects. Thank you Joey! I am going to head off to try and catch up on even more sleep for another very busy week in my business coming up.
Let's start with PANIC TIME!!
Wednesday....Every Wednesday I go have blood work done to see how my red cells, white cells, ect....are doing and as I am getting ready for this, I call the pharmacy to see if they had heard yet from the Prescription assistance program in regards to my almost $800 per month co-pay. They have not yet approved it....OK it's Wednesday.....I do my treatments on Thursday.....I have no more Pegasys.....I DON'T have $800 to pay for the shots! I called my doctor and he didn't have any extra samples - I was just kicking myself for day1....remember, the wasted shot? I was so upset, my mom told me to go get a massage (my son had given me some free massages to use during treatment) so I make the appointment do attempt to de-stress....the therapist was great!
I felt so much better afterward. I got out to my car and noticed that I had missed a call from the doc's office......they found some samples for me! I was so excited! I had to drive about 30 miles to go get them but that was ok!! I went in and received the box of shots from the nurse and was so far on cloud nine that I didn't even look in the box!
On Thursday afternoon I received a call from the Doctor.....White count is falling already. So we are going to continue treatment and monitor more closely. The good thing is that now they have an additional treatment they can put you on to assist in raising white blood cells. They didn't have that 10 years ago for Hep C patients. We just have to get pre-approval from my insurance. So Thursday evening I am getting ready to take the treatment, I opened the box and noticed there were 3 weeks worth of pre-loaded pegasys shots! WITH NO NEEDLES! Panic again!!!! Dr office closed!! What am I going to do? Then I remembered the day 1 shot that never got used.....Luckily I still had the needle from that shot! WHEW!!! I tell ya.....my emotions at this point are on a roller-coaster ride!
Still not sleeping well at this point - a few hours a night. I am totally exhausted. I had a very busy weekend as well - two vendor shows! Thank GOD Wendy, Randi and Stacie were there to take up my slack on the longest one (Draper Days - a two day show)....I am so grateful for each of them :) And my Baby Girl went with me to the other......and she made a sale!!!
Here it is Sunday night and I was able to get quite a bit of rest today! After church Jaxon & I took a nap and then I took another short nap and off to the massage therapist. My son was a member of a local Massage Envy and he had 13 prepaid massages that he gifted to me to help releive the stress of the side effects. Thank you Joey! I am going to head off to try and catch up on even more sleep for another very busy week in my business coming up.
Tuesday, July 13, 2010
Update
Good morning....Last few nights were awful for sleep! Gotta get back on my routine - SOON!!
Other than sleep deprivation :) I am doing well! I know I have lots of prayers going on out there! Thank you for that! Still no word on prescription assistance, hopefully I will hear back from them today! Next shot is in two days!
Other than sleep deprivation :) I am doing well! I know I have lots of prayers going on out there! Thank you for that! Still no word on prescription assistance, hopefully I will hear back from them today! Next shot is in two days!
Sunday, July 11, 2010
Worship
Church was awesome today!! Jaxon went to his new 2yr old class :) He had such a wonderful time! Sermon was excellent! The music just filled the room with his presence! GREAT DAY!
The Lake House
Yesterday was wonderful - after a relaxing venture out with my mom for a few hours in the morning, I laid down for a nap and my daughter woke me up with homemade brownies - nice surprise :) She came over to watch 'The Lake House" with me.....she put on the DVD and climbed in bed with me and we laughed, cried and ate brownies together as we watched the movie....It was nice to spend some time with her......she only lives about a mile away from us but sometimes it seems like she lives on the other side of the US. lol I love my baby girl!!
Saturday, July 10, 2010
Mornings
Mornings sure seem to be the best for me.....from about 5 till around 10. I feel really good during those times but once 10 hits whew....I am wiped! My sleep pattern is a little crazy right now but hopefully it will level out and I can sleep through the night again :) Looking forward to worship tomorrow!!!
Friday, July 9, 2010
Last Night
Last night was a little tough.....I bet I woke up 12 times!! Not really sure why. Today I feel good so far, really wasn't expecting to....but so grateful that I am :) The injection sites itch like crazy and my first injection (July1) site is still red. Looks funny but as long as I keep my tummy covered no-one can see:) I dedicate a small amount of time each day to learn more about this disease and the treatments, and it so amazes me how many people in this world suffer from liver disease - 5.3 MILLION people about 2% of the US population! Hmmmm wonder what it is about me and 2%? I was in the top 2% in my previous Direct selling company and am probably within the top 2% of my current Direct Selling company and now I find I am in the 2% of the US population who has liver disease. Next I MUST put myself in the top 2% of CURED people :) Now that's a good goal!!!
Thursday, July 8, 2010
The Cure Day!
Today is Thursday.....for the next 47 weeks "Thursday" will be known as "the cure day" :)
I take my shot of "cure" every Thursday - so I figure I will rename it to something that will make it more positive!
I want to thank those who are leaving me comments and supporting me in so many different ways....I love you all!
Today I found out my cousin went through the treatment too and he is another success story! God is so good.....all the time! We talked for quite a while about the side effects and stages of his treatment. He gave me some great advise and it's great to know there is someone I can call if I need to talk. That's about all I have for today, going to go get a good nights sleep and see what tomorrow has in store for me :)
I take my shot of "cure" every Thursday - so I figure I will rename it to something that will make it more positive!
I want to thank those who are leaving me comments and supporting me in so many different ways....I love you all!
Today I found out my cousin went through the treatment too and he is another success story! God is so good.....all the time! We talked for quite a while about the side effects and stages of his treatment. He gave me some great advise and it's great to know there is someone I can call if I need to talk. That's about all I have for today, going to go get a good nights sleep and see what tomorrow has in store for me :)
Wednesday, July 7, 2010
Great things today in spite!
Had somewhat of a setback today......found out that my insurance is going to pay for 65% of my treatment leaving me with only 35% to pay......$779.00 per month!!!!! for almost 11 months!!!
The pharmacy I am going through is trying to get a grant from the manufacturer so I am keeping that in my prayers :)
Speaking of prayers....and thoughts....I went to get my blood-work done today (it will be a weekly visit to the lab) and when I got home one of my dear friends had brought over cupcakes with a note letting me know she was thinking of me :) Thank you Stacie!
The pharmacy I am going through is trying to get a grant from the manufacturer so I am keeping that in my prayers :)
Speaking of prayers....and thoughts....I went to get my blood-work done today (it will be a weekly visit to the lab) and when I got home one of my dear friends had brought over cupcakes with a note letting me know she was thinking of me :) Thank you Stacie!
Now this is support!!!
One of the side effects of my treatment is the loss of your hair.....so when I told my sister, who ironically is a hair dresser, about me starting treatment and the side effects - she told me that she would go through it with me.....even over 2000 miles away from me.....she would go through it with me! We have talked almost every single day! The best and most touching part of this story is that she has cut her hair to the same length as mine and together we will maintain the "same hair style" through out the entire 48 weeks even if it means having none! You see there is a little story behind this gracious and selfless support that my sister gives....about 16 yrs ago, she was diagnosed with cancer - my mother told her "Don't you worry Wendy.....if you loose your hair I will shave my head!" With God's grace, my sister escaped chemo & radiation. She was able to keep all her hair but she never let go of how our momma made her feel simply by offering to sacrifice with her. Thank you "Susa" for your sacrifice and your support....I love you!
Tuesday, July 6, 2010
Another good day
Today was another good day! I got up early (ok, that wasn't so good) and got some work done and headed down to the corp office......it was good to see everyone :) I also got to sit down with someone who has successfully completed treatment and listen to their experience and get tips on how to cope with the side effects. Their support and encouragement is exactly what I needed! Can't ever get enough of that!!
Sunday, July 4, 2010
Independence Day
Wow this day sure takes on new meaning for me :)
I am so grateful for the opportunity to fight for my freedom.....freedom from this disease! One thing going on treatment has done for me is it has made me feel in control finally.....I have lived 45 years with this disease and it has controlled me up until now. So many years of being sick and not ever knowing why....being diagnosed with a disease that had no name....not knowing where it came from....finding out that there is no known cure....knowing I had no choice but to live with this disease for the rest of my life....until now! Now we have a name....we know where it came from....there really is a cure....and I have a choice! That to me is freedom. Thank you lord for giving me a good day, a day to rejoice and be grateful. A chance to fight and be free!
I am so grateful for the opportunity to fight for my freedom.....freedom from this disease! One thing going on treatment has done for me is it has made me feel in control finally.....I have lived 45 years with this disease and it has controlled me up until now. So many years of being sick and not ever knowing why....being diagnosed with a disease that had no name....not knowing where it came from....finding out that there is no known cure....knowing I had no choice but to live with this disease for the rest of my life....until now! Now we have a name....we know where it came from....there really is a cure....and I have a choice! That to me is freedom. Thank you lord for giving me a good day, a day to rejoice and be grateful. A chance to fight and be free!
Saturday, July 3, 2010
Day 2
Pretty uneventful day......The Ribovirin gives me headaches, so Tylenol has become my best friend! I think I took 3 naps!! Definitely all rested up for day 3 - I know the days will get better as my body gets over the initial shock - looking forward to it!
Friday, July 2, 2010
Day 1 of treatment July 1st 2010
This morning I went to my see my doc, Eric, he made me feel so important.....we spent almost 2 hours talking about my disease and answering all my questions about treatment. I know this time will be a great success! His whole team is so supportive and really easy to talk to.....I feel very blessed to have found them.
He walked in with this "starter kit" of information, first aid kit, ice pack, more information, contact numbers (including his personal cell phone) and went through every item and explained it all to me. Then he came in with the medication and we went over all the instructions and got the first injection all ready for me to self administer at the comfort and privacy of my home. A million emotions started flooding my head and body.....this is it....this is really about to happen. I have failed treatment twice before, but this time - I have faith - It will work!
I drove straight home and started going over all the material again because - through all the emotion - I had forgotten everything he said :) I waited for my husband to come home to start with my first injection. We sat on the bed and, I showed him everything and I mean everything - read through all the materials, got my first dose out and psyched myself up for the first injection. Again, I forgot everything......I had to look through the step by step instructions again.....I had also forgotten that the doctor had already prepared that first injection for me....so I immediately pushed the syringe up to release any air bubbles, like I knew what I was doing, and shot the whole dose out onto the bed! I wanted to just start crying but instead my husband I started to laugh!!! About $750.00 worth of Pegasys Interferon wasted!! He went over to the fridge like it was no big deal and got another dose out for me and we read AGAIN through the instructions together...this time we had we had the prep right!
He had already arranged for everything and everyone outside of our bedroom to be taken care of so all I had to do was rest. It probably took me about 3 minutes to inject myself but it seemed like I was sitting there for 30 minutes with the needle an inch away from my skin. Again psyching myself up for this 48 week long journey. And then I just took a deep breath and...did it!
He walked in with this "starter kit" of information, first aid kit, ice pack, more information, contact numbers (including his personal cell phone) and went through every item and explained it all to me. Then he came in with the medication and we went over all the instructions and got the first injection all ready for me to self administer at the comfort and privacy of my home. A million emotions started flooding my head and body.....this is it....this is really about to happen. I have failed treatment twice before, but this time - I have faith - It will work!
I drove straight home and started going over all the material again because - through all the emotion - I had forgotten everything he said :) I waited for my husband to come home to start with my first injection. We sat on the bed and, I showed him everything and I mean everything - read through all the materials, got my first dose out and psyched myself up for the first injection. Again, I forgot everything......I had to look through the step by step instructions again.....I had also forgotten that the doctor had already prepared that first injection for me....so I immediately pushed the syringe up to release any air bubbles, like I knew what I was doing, and shot the whole dose out onto the bed! I wanted to just start crying but instead my husband I started to laugh!!! About $750.00 worth of Pegasys Interferon wasted!! He went over to the fridge like it was no big deal and got another dose out for me and we read AGAIN through the instructions together...this time we had we had the prep right!
He had already arranged for everything and everyone outside of our bedroom to be taken care of so all I had to do was rest. It probably took me about 3 minutes to inject myself but it seemed like I was sitting there for 30 minutes with the needle an inch away from my skin. Again psyching myself up for this 48 week long journey. And then I just took a deep breath and...did it!
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