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
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