Today was a pretty heavy day. Pat's parents and I went to the funeral home, and talked about the arrangements. As if being in the funeral home wasn't bad enough itself, I have no idea how we are going to pay for this. After we picked everything out, the grand total came to roughly $8,000, and that doesn't even include the burial plot. My head is in a whirlwind right now, and I can't even think straight. So, humbly, I am asking for your help. This whole experience has been a humbling one. I am so grateful that so many people are reaching out to my family, and everyone seems to have perfect timing. I feel so blessed to call many of you my friends. I have formed so many new relationships, that I know will be lasting ones. I feel bonds with people that I haven't felt in years, or maybe never had to begin with, and it's completely amazing to me. Through all the tears, I can already see God at work.
A few days before Pat passed away, I was up writing on the blog, and I started thinking to myself. I started to feel guilty, because this is supposed to be Pat's Journey, yet here I was revealing all of my personal, heartfelt feelings. Then I realized something. So many people that were reading my blog, were coming to know him through my heart, and my words. There are people following this blog, who knew Pat, and loved him. But there were also many people reading, that had never got the privilege to meet him, who were, in a sense, meeting him, and loving him, through my eyes. And I find it beautiful.
I also have found that writing this blog, and Pat's story, from my heart of hearts, has been so therapeutic for me. It helps some to be able to let loose, and get it all out. There is no one there to interrupt me, it's just me and my thoughts, and a keyboard. It has honestly been such a huge blessing.
I cannot write long tonight, as I have another long day ahead of me tomorrow. I just wanted to get a little off of my heart...it was feeling a little heavy.
Thursday, February 17, 2011
Wednesday, February 16, 2011
I feel numb......
Today was an ok day. I feel numb. I don't know what to do. I feel lost. It hasn't sunk in yet. I'm not sure when it will, but I know it's gonna hit me like a ton of bricks, when it does. I think once the madness calms down, and everyone goes back to 'normal', and I am alone with only my thoughts....that's when it will hit me.
I keep waiting for the phone to ring, waiting to hear his voice again. Waiting for him to pop out, and laugh, and tell me it was all just a big joke. He always loved to scare me! And although I find myself fantasizing about it, I know that's not going to really happen.
When I was pregnant with Kayden, Pat recorded a message to our son. I got out the video camera and watched it today. I thought I was going to break down, and cry my heart out. Instead, I laughed, and smiled, and it was good. It was so wonderful to be able to hear his voice again, and see his beautiful smile. Even though the video was directed towards our son, it was still the same fun-loving, jovial Pat we all know and love, and I plan on trying to play it at the service.
Today I bought a few things. I bought Pat a new hat. I also bought him a clinging cross. I found this originally at the hospital gift shop in Oklahoma. My mom, Keegan, Kayden, and I, all gave it to him as a gift. We gave it to him before he fell into a coma, but he was so out of it, he didn't realize what we had given him. When he came out of the coma, he never put it down. If you have never seen one before, I encourage you to google it. They are pretty amazing. It is a hand-held cross, that feels like it was made to fit your hand, no matter what your size. When we left Oklahoma to come back to Billings, I didn't think about packing it. I thought we would be gone for a week. Pat had mentioned it, while he was in the hospital, and I looked in the giftshop, but they did not carry them. I hadn't had a chance to look anywhere else, but saw it fitting to get one for him. So today I went to the Berean Book Store, and I bought one. He will be buried 'clinging' to the cross. I also bought myself a necklace, with a 'mini clinging cross', and I put his two rings on it. The rings are meant for Kayden and Keegan, when they are old enough to understand. Until then, they will be near my heart.
I will be posting pictures on here soon. I just have to create a few albums, when I find the time. Until then, I have posted a new album on facebook, with pictures of him. Please feel free to check them out. If you are not my 'friend' on facebook, feel free to add me. Please put something in the message box though, so I don't think it's spam, and not add you.
We will meet with the funeral home tomorrow, and discuss the arrangements. I will keep everyone posted as to when and where it will be held. If not on this blog, then on facebook. And of course there will be an obituary in the paper, with the details as well. I hope those of you that he has touched will be there. He never truly knew how deeply loved, and cared about he was. He always used to ask me, "How many people do you think will be at my funeral?" My answer was always, "A ton, my love." I don't think he ever really believed me, until the end. So many of you poured out your love to him. I thank you for that. Even if he didn't know in the end, he will know on the day of his funeral, when he is watching from above. He will see that I was right, a ton of people, will be at his funeral.
I miss him so. I feel so empty inside. I cannot even imagine what this will be like when I come to the realization that he is gone, for good. Every time I think about it, I get a huge knot in my stomach, and feel like I can't breathe. I just want him back. Back in my arms.
I keep waiting for the phone to ring, waiting to hear his voice again. Waiting for him to pop out, and laugh, and tell me it was all just a big joke. He always loved to scare me! And although I find myself fantasizing about it, I know that's not going to really happen.
When I was pregnant with Kayden, Pat recorded a message to our son. I got out the video camera and watched it today. I thought I was going to break down, and cry my heart out. Instead, I laughed, and smiled, and it was good. It was so wonderful to be able to hear his voice again, and see his beautiful smile. Even though the video was directed towards our son, it was still the same fun-loving, jovial Pat we all know and love, and I plan on trying to play it at the service.
Today I bought a few things. I bought Pat a new hat. I also bought him a clinging cross. I found this originally at the hospital gift shop in Oklahoma. My mom, Keegan, Kayden, and I, all gave it to him as a gift. We gave it to him before he fell into a coma, but he was so out of it, he didn't realize what we had given him. When he came out of the coma, he never put it down. If you have never seen one before, I encourage you to google it. They are pretty amazing. It is a hand-held cross, that feels like it was made to fit your hand, no matter what your size. When we left Oklahoma to come back to Billings, I didn't think about packing it. I thought we would be gone for a week. Pat had mentioned it, while he was in the hospital, and I looked in the giftshop, but they did not carry them. I hadn't had a chance to look anywhere else, but saw it fitting to get one for him. So today I went to the Berean Book Store, and I bought one. He will be buried 'clinging' to the cross. I also bought myself a necklace, with a 'mini clinging cross', and I put his two rings on it. The rings are meant for Kayden and Keegan, when they are old enough to understand. Until then, they will be near my heart.
I will be posting pictures on here soon. I just have to create a few albums, when I find the time. Until then, I have posted a new album on facebook, with pictures of him. Please feel free to check them out. If you are not my 'friend' on facebook, feel free to add me. Please put something in the message box though, so I don't think it's spam, and not add you.
We will meet with the funeral home tomorrow, and discuss the arrangements. I will keep everyone posted as to when and where it will be held. If not on this blog, then on facebook. And of course there will be an obituary in the paper, with the details as well. I hope those of you that he has touched will be there. He never truly knew how deeply loved, and cared about he was. He always used to ask me, "How many people do you think will be at my funeral?" My answer was always, "A ton, my love." I don't think he ever really believed me, until the end. So many of you poured out your love to him. I thank you for that. Even if he didn't know in the end, he will know on the day of his funeral, when he is watching from above. He will see that I was right, a ton of people, will be at his funeral.
I miss him so. I feel so empty inside. I cannot even imagine what this will be like when I come to the realization that he is gone, for good. Every time I think about it, I get a huge knot in my stomach, and feel like I can't breathe. I just want him back. Back in my arms.
Tuesday, February 15, 2011
It's not goodbye, it's I'll see you soon....
I lost my best friend today. He is my world. He has my heart. He is my soul-mate. He is my everything, and now he is gone. I cannot begin to describe the feelings I have felt today. I cannot think straight. I cannot see straight. But I do know my heart is shattered into a million pieces. I have hit a brick wall, going 120.
I am in disbelief that this has happened. I keep thinking I can wake up tomorrow, and be able to talk to him again. I keep wanting to pick up the phone, and talk to him, just to hear his voice for a couple of seconds. The reality is, I cannot. It still feels so dreamlike, yet my mind keeps telling me, it's not a dream. In fact, it's my worst nightmare, but still my life, none the less.
Although I am completely distraught, I take some comfort in knowing, Pat is healed. Although, it may not be the healing I was hoping for, he is healed none the less. He is in Heaven, with Jesus, and our Heavenly Father, and he is at peace. He is no longer in pain, no longer suffering, he can finally rest. He is in complete bliss. And I am so thankful for that.
I also take comfort in the fact that I know God is bigger than me. I know God has a bigger plan, and although I cannot fathom what that bigger plan is right now, I know that is because I am human and God is, well He's God. The reason that I have faith that He has a plan, and there is a bigger picture, is because of what I experienced in Oklahoma. When Pat fell into a coma, it was one of the lowest points of my life. I now have a 'new' low point, but that is at the top. I kept asking, "Why?! What good could possibly come from this?! I know you have a plan God, but what could it be at this point?!" Now looking back, I can see what it was. First of all, ultimately he came out of that coma. In doing so, it was a miracle! It strengthened my relationship with the Lord, and Pat's tenfold. There were so many people praying for him, and our family. It ended up bringing so many people, many of whom we didn't even know, closer to the Lord. I also believe it brought people to Christ, that may not have known him before. There were people praying for us, that I'm sure hadn't prayed in years, that were now growing in their relationship with Him. Second of all, it brought Pat and I closer together. We realized what we had, and realized all the little things, no longer mattered. We had a new found appreciation for each other, and got to experience the 'newlywed stage', all over again. The love we had for each other multiplied over and over again. It also put all of our other relationships with friends and family on a higher pedestal. We valued all of those relationships so much more. It spread to our friends and family as well. They all had a new found love and appreciation for each other as well. But even more than the people we knew directly, it also helped people we didn't even know. These people were also affected, and started to look at their relationships in their lives. I know it sounds so cliche, but really life is too short to 'sweat the small stuff.' You always think these kinds of things happen to other people. The reality is, if it happened to me, it can happen to you. And you never know when, and you can never prepare yourself for it. When I was going through, what I went through in Oklahoma, I couldn't see what the bigger picture was, but in hindsight, I now know why it happened. And for that I am grateful. So knowing that, it gives me so much hope, that although right now I don't understand what it is, I know there is a bigger picture that I just can't see, but I know God is in control, and He knows what that bigger picture is.
So please, tell those you love, that you love them, tell them often, and overuse the word. Kiss them goodnight every night. Never go to bed angry, you never know if tomorrow will come. After you are done reading this post, I hope you go tell someone, anyone, that you love them.
I know one day soon, I will meet him again. He will be there with Jesus, welcoming me to Heaven, with his gorgeous smile. It's not goodbye, it's, I'll see you soon. That doesn't stop my heart from aching for him, or my body from longing to be held by him again.....
Patrick Joseph Nave: June 4, 1978- February 14, 2011.....You will never be forgotten, and will always be loved. I promise, my sweet, sweet Valentine...
I am in disbelief that this has happened. I keep thinking I can wake up tomorrow, and be able to talk to him again. I keep wanting to pick up the phone, and talk to him, just to hear his voice for a couple of seconds. The reality is, I cannot. It still feels so dreamlike, yet my mind keeps telling me, it's not a dream. In fact, it's my worst nightmare, but still my life, none the less.
Although I am completely distraught, I take some comfort in knowing, Pat is healed. Although, it may not be the healing I was hoping for, he is healed none the less. He is in Heaven, with Jesus, and our Heavenly Father, and he is at peace. He is no longer in pain, no longer suffering, he can finally rest. He is in complete bliss. And I am so thankful for that.
I also take comfort in the fact that I know God is bigger than me. I know God has a bigger plan, and although I cannot fathom what that bigger plan is right now, I know that is because I am human and God is, well He's God. The reason that I have faith that He has a plan, and there is a bigger picture, is because of what I experienced in Oklahoma. When Pat fell into a coma, it was one of the lowest points of my life. I now have a 'new' low point, but that is at the top. I kept asking, "Why?! What good could possibly come from this?! I know you have a plan God, but what could it be at this point?!" Now looking back, I can see what it was. First of all, ultimately he came out of that coma. In doing so, it was a miracle! It strengthened my relationship with the Lord, and Pat's tenfold. There were so many people praying for him, and our family. It ended up bringing so many people, many of whom we didn't even know, closer to the Lord. I also believe it brought people to Christ, that may not have known him before. There were people praying for us, that I'm sure hadn't prayed in years, that were now growing in their relationship with Him. Second of all, it brought Pat and I closer together. We realized what we had, and realized all the little things, no longer mattered. We had a new found appreciation for each other, and got to experience the 'newlywed stage', all over again. The love we had for each other multiplied over and over again. It also put all of our other relationships with friends and family on a higher pedestal. We valued all of those relationships so much more. It spread to our friends and family as well. They all had a new found love and appreciation for each other as well. But even more than the people we knew directly, it also helped people we didn't even know. These people were also affected, and started to look at their relationships in their lives. I know it sounds so cliche, but really life is too short to 'sweat the small stuff.' You always think these kinds of things happen to other people. The reality is, if it happened to me, it can happen to you. And you never know when, and you can never prepare yourself for it. When I was going through, what I went through in Oklahoma, I couldn't see what the bigger picture was, but in hindsight, I now know why it happened. And for that I am grateful. So knowing that, it gives me so much hope, that although right now I don't understand what it is, I know there is a bigger picture that I just can't see, but I know God is in control, and He knows what that bigger picture is.
So please, tell those you love, that you love them, tell them often, and overuse the word. Kiss them goodnight every night. Never go to bed angry, you never know if tomorrow will come. After you are done reading this post, I hope you go tell someone, anyone, that you love them.
I know one day soon, I will meet him again. He will be there with Jesus, welcoming me to Heaven, with his gorgeous smile. It's not goodbye, it's, I'll see you soon. That doesn't stop my heart from aching for him, or my body from longing to be held by him again.....
Patrick Joseph Nave: June 4, 1978- February 14, 2011.....You will never be forgotten, and will always be loved. I promise, my sweet, sweet Valentine...
Monday, February 14, 2011
I am afraid to go to sleep.....
Well nothing too drastic has changed since my last post. They have upped his pain medication a few times today. He has a PCA pump, so he is on a continuous drip of dilaudid, but also can push the button every 15 minutes to administer a boost to himself. His pain levels were much better today.
His family and I talked to the doctors today, and came to the consensus that we will just let this disease take it's course. He will not be put on any form of life support, or be resuscitated if he were to stop breathing. He doesn't need to be in pain, or continue to suffer. And although Pat wouldn't give us all a black and white answer, I feel like this is what he wants. Although I feel like we all made the right choice, it does not make it any easier. It's a pretty tough pill to swallow.
I had to tell my husband today, that although I don't want him to go, I understand that if he is tired, he can. I had to tell him, it was 'ok'. Even though on the inside, I am not 'ok', and don't feel like I am going to ever be 'ok'. My life will never be the same again. I know people say that it gets easier with time, but right now, that's impossible for me to envision.
There is a man we met a few months back. His name is Tom. We had a going away/fundraiser dinner before we left to go to Oklahoma, and we met him that night. His wife was also going through cancer at the time, and was in another city getting treatments, while he was here, working. When we came back a few weeks ago, and had the get together dinner, he just happened to be there. In the time we were gone, he had lost his wife. When I heard this, my heart ached for the man. I hardly knew him, yet I wept for his sadness. I could see it in his bright blue eyes. I knew it was a possibility I would be in his shoes one day. Yet I did not want to believe it would be this soon.
I am afraid to go to sleep tonight, because I am afraid when I wake up, he will not be here...
His family and I talked to the doctors today, and came to the consensus that we will just let this disease take it's course. He will not be put on any form of life support, or be resuscitated if he were to stop breathing. He doesn't need to be in pain, or continue to suffer. And although Pat wouldn't give us all a black and white answer, I feel like this is what he wants. Although I feel like we all made the right choice, it does not make it any easier. It's a pretty tough pill to swallow.
I had to tell my husband today, that although I don't want him to go, I understand that if he is tired, he can. I had to tell him, it was 'ok'. Even though on the inside, I am not 'ok', and don't feel like I am going to ever be 'ok'. My life will never be the same again. I know people say that it gets easier with time, but right now, that's impossible for me to envision.
There is a man we met a few months back. His name is Tom. We had a going away/fundraiser dinner before we left to go to Oklahoma, and we met him that night. His wife was also going through cancer at the time, and was in another city getting treatments, while he was here, working. When we came back a few weeks ago, and had the get together dinner, he just happened to be there. In the time we were gone, he had lost his wife. When I heard this, my heart ached for the man. I hardly knew him, yet I wept for his sadness. I could see it in his bright blue eyes. I knew it was a possibility I would be in his shoes one day. Yet I did not want to believe it would be this soon.
I am afraid to go to sleep tonight, because I am afraid when I wake up, he will not be here...
Saturday, February 12, 2011
The bad news keeps getting worse....
Well I cannot even seem to form words today. My body feels completely numb. My heart is breaking in two. I keep thinking my body is out of tears, but no, they just keep flowing.
My husband's situation has gone from bad to worse. The infection has spread to his lungs. It is over-taking his entire body, and they are doubtful that he will pull through this. He is in excruciating pain, and his coughing is getting worse. They have upped the dose of his pain medication, but they also worry that it could inhibit his breathing to the point of it stopping completely. If that were to happen, they don't think he would survive the trauma of being intubated (being put on a ventilator), or being resuscitated. As it stands right now, they will do limited CPR, but will not intubate him.
These blog posts just keep getting harder, and harder to write. I actually have to go back and read again, and again what I am writing. I have to keep asking myself, "Is this real? Am I really blogging about my husband possibly passing away?" The unfortunate answer is, yes. This is my life. It's not a dream.
I am constantly reminded of all the things we looked forward to. Now he may not be there to share them with me, and it's absolutely killing me. Valentine's Day is just around the corner, and I hope I am able to share that day with him, but I know, it's a possibility that I may not. Our anniversary is a little over a month away, and we may not even get to celebrate it together. I look into my little boy's eyes, and I feel so blessed that I am his mommy, and that Pat is his daddy. Yet with every look I am also reminded that his daddy may not be here to see all his milestones. He may not get to hear his first real laugh. He may not get to hear those first words, or watch him take his first steps. It is absolutely heart-breaking.
I am so afraid to be alone. It's just not fair. I finally found that one person, in the whole entire world, that I want to spend the rest of my life with, and now he may be taken from me. I hate it. I hate cancer.
I feel so selfish. I know if he passes away, he will be in a much better place. He will be in heaven, with Jesus, and our Heavenly Father. He will be in a place where there is no pain, no suffering, and no tears of sadness. Yet I want him to stay here, with me, with our family.
For those of you that know Pat personally, I would encourage you to come see him. You may not get the chance to again. For those of you that don't know him, I wish you did. He is the most amazing person I have ever met. He has the hugest heart, and is so strong, and courageous. He has put up one heck of a fight, and I know he is tired.
I am begging you, please pray for my husband. Please share this blog with anyone and everyone you know, and encourage them to do the same. Maybe if God hears all of our cries, he will save my husband. I still am hoping for that miracle....
My husband's situation has gone from bad to worse. The infection has spread to his lungs. It is over-taking his entire body, and they are doubtful that he will pull through this. He is in excruciating pain, and his coughing is getting worse. They have upped the dose of his pain medication, but they also worry that it could inhibit his breathing to the point of it stopping completely. If that were to happen, they don't think he would survive the trauma of being intubated (being put on a ventilator), or being resuscitated. As it stands right now, they will do limited CPR, but will not intubate him.
These blog posts just keep getting harder, and harder to write. I actually have to go back and read again, and again what I am writing. I have to keep asking myself, "Is this real? Am I really blogging about my husband possibly passing away?" The unfortunate answer is, yes. This is my life. It's not a dream.
I am constantly reminded of all the things we looked forward to. Now he may not be there to share them with me, and it's absolutely killing me. Valentine's Day is just around the corner, and I hope I am able to share that day with him, but I know, it's a possibility that I may not. Our anniversary is a little over a month away, and we may not even get to celebrate it together. I look into my little boy's eyes, and I feel so blessed that I am his mommy, and that Pat is his daddy. Yet with every look I am also reminded that his daddy may not be here to see all his milestones. He may not get to hear his first real laugh. He may not get to hear those first words, or watch him take his first steps. It is absolutely heart-breaking.
I am so afraid to be alone. It's just not fair. I finally found that one person, in the whole entire world, that I want to spend the rest of my life with, and now he may be taken from me. I hate it. I hate cancer.
I feel so selfish. I know if he passes away, he will be in a much better place. He will be in heaven, with Jesus, and our Heavenly Father. He will be in a place where there is no pain, no suffering, and no tears of sadness. Yet I want him to stay here, with me, with our family.
For those of you that know Pat personally, I would encourage you to come see him. You may not get the chance to again. For those of you that don't know him, I wish you did. He is the most amazing person I have ever met. He has the hugest heart, and is so strong, and courageous. He has put up one heck of a fight, and I know he is tired.
I am begging you, please pray for my husband. Please share this blog with anyone and everyone you know, and encourage them to do the same. Maybe if God hears all of our cries, he will save my husband. I still am hoping for that miracle....
I won't let go......
It's like a storm
That cuts a path
It's breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont
....................lyrics to 'I won't let go' by Rascal Flatts. It's what my heart is singing tonight......
Video posted below.....
I am posting another update in just a few minutes, so please check that out.
That cuts a path
It's breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont
....................lyrics to 'I won't let go' by Rascal Flatts. It's what my heart is singing tonight......
Video posted below.....
I am posting another update in just a few minutes, so please check that out.
Friday, February 11, 2011
Does the Bad News Ever End?
Well as many of you already know, Pat is still in the hospital. This morning they told us that Pat has VRE (Vancomycin Resistant Enterococcus) in his bloodstream.
Here is what I have learned about VRE.
Here's why it is a scary situation: Pat has NO immune system. In a healthy person, this would really be no big deal. To Pat, on the other hand, it can be deadly. He has no white blood cells to fight this infection off. Antibiotics work best when they have a healthy immune system to work along side them. Pat's white blood cell counts have been extremely low the past several weeks, and the doctors don't know that they will ever recover. So they really don't know if they can cure this with antibiotics only. They have started him on another antibiotic, but if doesn't respond well to that treatment, he could end up going into septic shock, and basically all of his organs would shut down.
From what the doctor told me a couple of weeks ago, in Leukemic patients, it's not the Leukemia they end up passing away from, it's a secondary infection.
So please, I beg of you, pray for my husband. Pray that he will kick this infection like it's nothin'. Pray that he gets healthy enough to let these alternative therapies work.
Lord-
I pray that You would give strength to my husband, Pat. I pray that You would wrap your loving arms around him, and give him peace in knowing You are with him. I lift him up to you, Lord, and I pray that You would heal him. I pray that You will take his pain away. I pray that You will pull him close, and make his relationship with You stronger. Lord, I pray that these antibiotics will work. I pray that You will keep Pat here, on earth, for a little longer, as we are not ready for him to leave us yet! I pray that You would comfort him, in times of sadness. I pray You would keep Your hand on him, and keep him safe.
In Jesus' name I pray,
Amen
I have not lost hope, but I still cannot believe this is my life. I keep hoping that I will just wake up, and realize that it's all been a horrible nightmare. Well, it is a nightmare, but it's my life, not a dream...
Here is what I have learned about VRE.
- Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don't cause any problems in healthy people.
- Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics.
- Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. It was first identified in Europe in 1986, and in the U.S. in 1988.
Here's why it is a scary situation: Pat has NO immune system. In a healthy person, this would really be no big deal. To Pat, on the other hand, it can be deadly. He has no white blood cells to fight this infection off. Antibiotics work best when they have a healthy immune system to work along side them. Pat's white blood cell counts have been extremely low the past several weeks, and the doctors don't know that they will ever recover. So they really don't know if they can cure this with antibiotics only. They have started him on another antibiotic, but if doesn't respond well to that treatment, he could end up going into septic shock, and basically all of his organs would shut down.
From what the doctor told me a couple of weeks ago, in Leukemic patients, it's not the Leukemia they end up passing away from, it's a secondary infection.
So please, I beg of you, pray for my husband. Pray that he will kick this infection like it's nothin'. Pray that he gets healthy enough to let these alternative therapies work.
Lord-
I pray that You would give strength to my husband, Pat. I pray that You would wrap your loving arms around him, and give him peace in knowing You are with him. I lift him up to you, Lord, and I pray that You would heal him. I pray that You will take his pain away. I pray that You will pull him close, and make his relationship with You stronger. Lord, I pray that these antibiotics will work. I pray that You will keep Pat here, on earth, for a little longer, as we are not ready for him to leave us yet! I pray that You would comfort him, in times of sadness. I pray You would keep Your hand on him, and keep him safe.
In Jesus' name I pray,
Amen
I have not lost hope, but I still cannot believe this is my life. I keep hoping that I will just wake up, and realize that it's all been a horrible nightmare. Well, it is a nightmare, but it's my life, not a dream...
Thursday, February 10, 2011
I cross my heart......
"Our love is unconditional, we knew it from the start.
I see it in your eyes, you can feel it from my heart.
From here on after let's stay the way we are right now,
And share all the love and laughter
That a lifetime will allow.
I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.
You will always be the miracle that makes my life complete,
And as long as there's a breath in me, I'll make yours just as sweet.
As we look into the future, it's as far as we can see,
So let's make each tomorrow be the best that it can be.
I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.
And if along the way we find a day it starts to storm,
You've got the promise of my love to keep you warm.
In all the world you'll never find a love as true as mine,
A love as true as mine."
........lyrics to the infamous George Strait song. This was the first song Pat and I danced to, as a married couple. Such a beautiful song, and the words ring so true to my heart. Valentine's Day is only a few days away, and when I thought about it, this song came to mind...
I have attached a video of this wonderful song...enjoy!
I see it in your eyes, you can feel it from my heart.
From here on after let's stay the way we are right now,
And share all the love and laughter
That a lifetime will allow.
I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.
You will always be the miracle that makes my life complete,
And as long as there's a breath in me, I'll make yours just as sweet.
As we look into the future, it's as far as we can see,
So let's make each tomorrow be the best that it can be.
I cross my heart and promise to
Give all I've got to give to make all your dreams come true.
In all the world you'll never find a love as true as mine.
And if along the way we find a day it starts to storm,
You've got the promise of my love to keep you warm.
In all the world you'll never find a love as true as mine,
A love as true as mine."
........lyrics to the infamous George Strait song. This was the first song Pat and I danced to, as a married couple. Such a beautiful song, and the words ring so true to my heart. Valentine's Day is only a few days away, and when I thought about it, this song came to mind...
I have attached a video of this wonderful song...enjoy!
Sunday, February 6, 2011
The Plan....
Hello Everyone!
I know it has been a few days since I last posted anything new, so I figured I better give you all an update.
Pat is still in the hospital for right now. His doctor told us that he looked through the clinical trials, and didn't see any that really fit him. Another option was to use a different formulation of chemotherapy. They would be chemotherapy drugs he has been on before, just a different formulation. He said the chances of this formulation working, is about 15%. He also said that if Pat would be the 1 in 8 that it does work on, it would only prolong his life for a matter of months, and not years. So here we were again, faced with "three options": try these clinical trials (knowing they weren't a good fit), try the different formulation of chemo (knowing there was only a success rate of 15%), or going home on hospice care (knowing that would mean we were giving up). None of the three options made any sense to us.
Pat's dad, Steve, had heard of some natural ways to treat diseases. So I did a little research online myself, and looked at these natural remedies. No drugs, no ill side effects. There is a tea called Essiac tea. If you have some free time google it. It has cured cancer before (and not just once or twice), so it can do it again. Our decision basically came down to this: We have no idea what is going to work. We don't know if this tea will work, we don't know if the trials will work, and we don't know if this new formulation of chemo will work. So in our eyes, the chances are all about the same. If he goes to do either the trials, or this chemo, chances are he will be very sick, and it still may not work. The trials, we would have to travel to another state, away from family and friends here, and have to start over again. The chemo we would be able to do here, but we know how sick the chemo makes him. So it all boiled down to 'quality of life'. Pat decided that he would rather have a better quality of life, and try this natural approach (which has just as good of a chance working as the other methods), rather than try the other methods, and be sicker than a dog, and have a poor quality of life.
I am just completely disgusted about most doctors views on hospice care. We were contemplating whether or not to put him in hospice care (in our home, not at a facility) just so if we needed a nurse, we would have one there. We were NOT contemplating it because we were just going to give up and watch him die. So I asked the doctor yesterday, "If he goes on hospice care will they be able to administer drugs?" He told me, "Yes, but only if they are designed to keep him comfortable (I.E. pain killers). So I asked, "what about anti-biotics"? (The reason I asked is because he is on them now, for an infection, and needs to be on them, or it will eventually kill him. His doctor told me the other day basically that's what will end up killing him. Sort of like AIDS. It's not the disease itself that kills people, it's from their immune systems being so low, they can't fight off infections, and it kills them.) So the doctor responds, "Well, if the anti-biotics are needed to manage pain, then yes. So for instance, if he has an infection in his mouth caused from a tooth, then yes, they will administer anti-biotics, because it is causing him pain. On the other hand, if he has an infection in his bloodstream, and it is causing him no pain, they will not administer anti-biotics." So today Pat asked if he would still be able to get lab work done, and get blood/platelet transfusions if necessary, the doctor told him this, "No, they will not give blood/platelet transfusions, if you are on hospice care. Hospice care is NOT designed to prolong your life, it is only there to make you comfortable." What?! Are you kidding me?! So if he goes home on hospice care (which in our eyes, was just as a backup in case something went wrong), they will just let him die, and not try to save him. Well that's just great!
So needless to say, we will be staying in Montana. We will need to find a place to stay, as we cannot continue to stay, forever, in this hotel that Pat's Aunt Cindy has graciously let us stay in (We love you Aunt Cindy!!). Hopefully they will keep him in the hospital until he is well enough to come home. We will try this more natural approach with open minds, and praying hearts. We hope it works, and at this point, we have nothing to lose. I will keep everyone updated as much as I can throughout this process. I hope to be posting awesome news over the next few months!
Until next time.....
Love
Jen :)
I know it has been a few days since I last posted anything new, so I figured I better give you all an update.
Pat is still in the hospital for right now. His doctor told us that he looked through the clinical trials, and didn't see any that really fit him. Another option was to use a different formulation of chemotherapy. They would be chemotherapy drugs he has been on before, just a different formulation. He said the chances of this formulation working, is about 15%. He also said that if Pat would be the 1 in 8 that it does work on, it would only prolong his life for a matter of months, and not years. So here we were again, faced with "three options": try these clinical trials (knowing they weren't a good fit), try the different formulation of chemo (knowing there was only a success rate of 15%), or going home on hospice care (knowing that would mean we were giving up). None of the three options made any sense to us.
Pat's dad, Steve, had heard of some natural ways to treat diseases. So I did a little research online myself, and looked at these natural remedies. No drugs, no ill side effects. There is a tea called Essiac tea. If you have some free time google it. It has cured cancer before (and not just once or twice), so it can do it again. Our decision basically came down to this: We have no idea what is going to work. We don't know if this tea will work, we don't know if the trials will work, and we don't know if this new formulation of chemo will work. So in our eyes, the chances are all about the same. If he goes to do either the trials, or this chemo, chances are he will be very sick, and it still may not work. The trials, we would have to travel to another state, away from family and friends here, and have to start over again. The chemo we would be able to do here, but we know how sick the chemo makes him. So it all boiled down to 'quality of life'. Pat decided that he would rather have a better quality of life, and try this natural approach (which has just as good of a chance working as the other methods), rather than try the other methods, and be sicker than a dog, and have a poor quality of life.
I am just completely disgusted about most doctors views on hospice care. We were contemplating whether or not to put him in hospice care (in our home, not at a facility) just so if we needed a nurse, we would have one there. We were NOT contemplating it because we were just going to give up and watch him die. So I asked the doctor yesterday, "If he goes on hospice care will they be able to administer drugs?" He told me, "Yes, but only if they are designed to keep him comfortable (I.E. pain killers). So I asked, "what about anti-biotics"? (The reason I asked is because he is on them now, for an infection, and needs to be on them, or it will eventually kill him. His doctor told me the other day basically that's what will end up killing him. Sort of like AIDS. It's not the disease itself that kills people, it's from their immune systems being so low, they can't fight off infections, and it kills them.) So the doctor responds, "Well, if the anti-biotics are needed to manage pain, then yes. So for instance, if he has an infection in his mouth caused from a tooth, then yes, they will administer anti-biotics, because it is causing him pain. On the other hand, if he has an infection in his bloodstream, and it is causing him no pain, they will not administer anti-biotics." So today Pat asked if he would still be able to get lab work done, and get blood/platelet transfusions if necessary, the doctor told him this, "No, they will not give blood/platelet transfusions, if you are on hospice care. Hospice care is NOT designed to prolong your life, it is only there to make you comfortable." What?! Are you kidding me?! So if he goes home on hospice care (which in our eyes, was just as a backup in case something went wrong), they will just let him die, and not try to save him. Well that's just great!
So needless to say, we will be staying in Montana. We will need to find a place to stay, as we cannot continue to stay, forever, in this hotel that Pat's Aunt Cindy has graciously let us stay in (We love you Aunt Cindy!!). Hopefully they will keep him in the hospital until he is well enough to come home. We will try this more natural approach with open minds, and praying hearts. We hope it works, and at this point, we have nothing to lose. I will keep everyone updated as much as I can throughout this process. I hope to be posting awesome news over the next few months!
Until next time.....
Love
Jen :)
Tuesday, February 1, 2011
I cannot believe I forgot to mention...
I got so caught up in ranting and raving, and venting about the health care system, that I completely forgot to mention the most important thing that happened today!
Pat was baptized Roman Catholic as a small child, and although I have been a believer for several years, I have never been baptized. So neither of us had been baptized into the Christian faith, and both of us have wanted to do so for a while. So TODAY was the big day! We had the hospital's chaplain come in today, and baptize Pat, myself, and we also dedicated both the boys to the Lord this afternoon. What a day to remember! With everything that is going on, I just can't forget how loving Our God truly is, and how amazing His love, and grace is. It is my faith, and my faith alone that has gotten me to where I am today, and He is bringing US through these struggles and trials. Although sometimes it is VERY hard to realize, I know He has a plan! He sees the bigger picture when we cannot. We are only human, but He is God!
Love
Jen :)
Pat was baptized Roman Catholic as a small child, and although I have been a believer for several years, I have never been baptized. So neither of us had been baptized into the Christian faith, and both of us have wanted to do so for a while. So TODAY was the big day! We had the hospital's chaplain come in today, and baptize Pat, myself, and we also dedicated both the boys to the Lord this afternoon. What a day to remember! With everything that is going on, I just can't forget how loving Our God truly is, and how amazing His love, and grace is. It is my faith, and my faith alone that has gotten me to where I am today, and He is bringing US through these struggles and trials. Although sometimes it is VERY hard to realize, I know He has a plan! He sees the bigger picture when we cannot. We are only human, but He is God!
Love
Jen :)
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