I have never felt so lost.....

Today has been a weird day.  I have never felt so lost in my life.  I don't know where to turn, or where to go.  I know this road is going to be a long hard one. 

I know it hasn't fully sunk in yet.  Every time I think about him being gone, I get the hugest knot in my stomach.  I hit that damn brick wall every time.  It's like my mind won't grasp around reality, so I have to keep going through it all over again. 

I hate this 'new' life, because he's no longer in it.

Today I looked into a young widows online support group.  An old friend recommended it.  I thought it would be a good thing, and I think eventually it will be.  Some of it is comforting, to know I am not alone in going through this.  To know there are others out there, around my age, that have suffered the loss of their spouse.   On some level it is comforting to know that these people do move forward, not necessarily on, but forward.  But (oh, yes, there is always a but) it is also so hard for me to read some of these posts, about people moving forward.  It seems so unattainable at this point, that it makes it worse.  It makes me more sad. 

I think eventually I will be able to read these posts, and feel good about them.  Right now, it's just too much to take in.  Too much, at one time.  I'm sure my opinions will change, maybe even from day to day.  I think that is part of the healing process.  But things like, when to take your rings off, don't even seem like options right now.  They don't seem like something I even want to do.  Ever.  I have read that this is part of the grieving process, and I'm not sure if that's comforting or not.  Apparently it is normal to not want to let go of anything at this point, and eventually it will be something that I will let go.  That's what scares me.  I don't want to ever want to let go of any of it.  I sleep with his coat, every night.  I don't want to one day, not want to sleep with it. 

Plain and simply put, I just miss my husband.  I want him back.  Now.  I want this pain to go away.  Now. 

I guess I thought that two or three months from now, it would be starting to get easier.  From what I read today, that is when it only begins.  It's not until 6 months that it starts to get easier, and for many people 'healing' doesn't fully begin anywhere from 2-5 years.  Years.  If it's this hard, at only a week out, what will it be like in a month?  Or two?  Or four?  Or on the one year mark?  At this point, he could just have gone away for a vacation.  That's what missing him would feel like, since it's only been a week.  So how am I going to handle this, when it really sinks in, and when he's been gone for a while?  I am a wreck as it is.  The future is utterly terrifying to me. 

I didn't want to do anything today.  I stayed in my pajamas for most of the day.  I had to force myself to take a shower.  I don't want to leave the house, and I know it will only get worse from here.  I was just utterly lost.  In the previous days, I had 'something to look forward to'.  Not that I actually looked forward to burying my husband, but all the details kept my mind occupied.  Now it's all over, and my mind is starting to wander.  The "what ifs" are eating my mind alive.  I cannot concentrate on even the simplest tasks.  Even while I am writing this tonight, I am losing my train of thought.  I literally have to keep going back, to figure out what I was writing about.  Something will pop in my head, but I forget within a matter of a few seconds.  I feel like I am a two year old again.  I have no attention span.  I can't help but wonder, how I am going to do this on my own.  How am I going to be able to function?  When everyone else 'goes back to normal', and I am still stuck in neutral.  I have two little boys to take care of, and right now I have help, and it's still hard, and I'm hardly doing anything.  What will this be like when I am really on my own?  Especially to think that I haven't even hit the hardest part yet, and that's when I will have only myself to count on.

I also cannot get the 'whys' out of my head.  Why him?  Why me?  Why us?  We were just starting our lives out together.  We hadn't even made it a year yet.  So close.  Why Valentine's Day?  Why?

When I took my vows, I took them seriously, and I took them thinking, "Till MY death does us part."  Not his.  So where am I supposed to go from here?

When I signed up for an account through the widow support group, it asked me a question.  "Was your spouse's death expected, or sudden?"  I couldn't help but think, "Well it was suddenly expected, and does it matter?"  Does it somehow make it easier that in the back of my mind, this could be the end result of this?  Well, the answer is a clear and resounding, NO!  I honestly never thought it would play out like this.  I thought some treatment would work.  I had hope.  Unfortunately it did happen, and now I'm the one stuck in the mud, trying to pull myself out.  But it's not mud, it's quicksand.  The more I fight, the deeper I go.  Even the last couple of days, when we did pretty much know this was the end, knowing didn't make it any easier.  It was the most traumatic thing I have ever watched play out before my eyes.  Did I get to have some talks with him, that I may not have gotten if it would have been unexpected?  Yes.  Does that make it any easier to deal with? No!  I had to sit back, helplessly, and watch my husband struggle for air.  I watched him take his last breath, as it felt like I was suddenly the one struggling to breathe.  I fell to his shoulders, and started sobbing.  Shaking my head in disbelief of what had just occurred before my eyes.  It was not pretty, and now those are the images that are ingrained in my mind.  They pop in suddenly, and overtake my thoughts.  It feels like someone punches me in the gut, every time.  And that's when I go through it all over again.  Trying to make sense of it all.  And none of it ever makes any sense.  I just want to scream, and yell, and scream some more.

The happiness has been getting to me lately.  Not so much from my friends and family, but from people I don't know.  I see them walking with smiles, and it just irritates me.  I think mostly because I envy them.  I hate the fact that I used to be so happy.  I used to love my life, and now it's turned into hatred.  I fear that it will turn into bitterness, and I don't want to be bitter.  I see it on facebook, people just going about their everyday lives, like nothing has happened.  And to most of them, nothing has, so really I expect nothing more.  But for me, my whole world has been turned upside down, and it's so hard to see other people living normal lives.  Don't get me wrong, I am not saying I don't notice people stepping up, and being there.  Because I most definitely do.  I have had people contact me that I haven't talked to in years.  People I don't even know, have offered their hand of support.  And I am grateful.  But nothing takes the pain away.  Nothing.  And it just hurts to see people, happy and normal.  Especially when I am depressed, and my life has become so unexpectedly abnormal.  I think it irritates me so much, because I was there once.  My status updates used to be oh so casual, like the majority of people.  And I just so badly want to be back where I was.  I miss my old life, the one that had him in it. 

I want to dream of him.  In the most recent months, we talked on the phone a lot.  He would be in the hospital, and I would be at home, or at the hotel.  Every night before we got off the phone, we would say goodnight.  After our I love you's,  he would say, "Dream of me."  I would respond, "Ok, babe, I'll meet you in my dreams."  I so badly right now want to meet him in my dreams, yet they will not come.  Instead I'm stuck in a nightmare, I call it my life.  I wouldn't wish this 'life' on my worst enemy.  Total and utter despair.  The only words I can use to describe it.   

How did I end up here?

I really am at a loss for words today.  I am not sure how I ended up here, but I don't like it.  I have been pretty numb this past week.  So numb, that I feel guilty for not crying when others are.  I kept asking myself, "why am I not crying?  This isn't normal!  I loved him so, yet everyone else seems to be tore up, and here I am, just staring off into space."  I cannot focus on anything.  It all comes and goes in spurts.  I am fine one moment, and then the next I am not.  My life has become nothing but unpredictable, and uncertain. 

Today we buried my husband.  That was beyond hard.  I didn't want to leave the cemetery, just as I didn't want to leave the hospital room that night.  I felt like I was abandoning him.  I know he is no longer with his body, but sometimes it is hard to distinguish between the two.

I know one day, it will get better.  I'll get there eventually, but it seems so unreachable and unattainable at this very moment.  I lost my step-mother several years ago, and that was the first person I had ever lost, that I was close to.  It was hard, but it has gotten easier.  I still think of her daily, but not with as much sadness...more with smiles of the memories we shared.  She was also young, in her early thirties, and also died of cancer.  Yet I cannot compare the two.  This was my best friend.  My soul mate.  My world.  The two are not interchangeable.  I cannot even begin to look at what my future holds, because it's too scary.  I cannot fathom a life without him.  I always imagined growing old with him, and sharing moments with our children, and grandchildren.  Now he is gone, and I am alone.  I have so many people surrounding me, yet I still feel so alone, because I am. 

It was a beautiful service yesterday.  There were so many people who came.  Just like I told him there would be.  I laughed.  I cried.  Most of all, I missed.  After the service, we had a reception.  The room was filled with mostly laughter, and a few tears.  This is what Pat would have wanted.  Toward the end, I had a pretty revealing moment.  A woman came up to me, and introduced me to her kids as "Pat's widow."  Wow.  That was pretty hard to hear.  That's what my life has become.  I am a widow at 26 years old.  It just doesn't seem possible.  When I was 16, if you would have asked me where I thought I would be in ten years, never in a million years did I think I would be here.  I don't want to be here right now. 

I know I will be with him again, and right now, I wish it was my time....now.  Don't read into this the wrong way.  I am not saying I am going to commit suicide.  And don't get me wrong, I love my family, and I love my boys.  But right now, none of it matters.  I miss my love, and I want to be with him.  I know the only way that will happen, is if I go too.  If you have never lost a spouse, then I don't expect you to understand.  If you have lost your spouse, then you know exactly what I mean. 

I have gone back and read some of my blog posts, and honestly I am not sure how I even wrote some of them.  Some of them sound so positive, and uplifting, even after he passed.  I apologize that I am not there today.  It will be a long time healing.  I'm sure I will go back and forth, up and down.  I already have.  It's only been a week, yet it feels like an eternity. 

My son Keegan, is such a lover.  In a little over a week, he will be five.  He understands, but minimally, what is going on.  He was with his biological dad, in Washington, when Pat passed.  He got here this past friday, for the services and such.  When I sat down to tell him, my heart broke all over again.  Another revealing moment.  I got a few pamphlets from the funeral home.  One was entitled, "Talking With a Child About a Loved One's Death."  It explained to avoid using phrases like, 'passed away', or 'went away', because it doesn't convey the finality of death.  So for the first time all week, I had to actually utter the words, "Pat died, honey."  His lip quivered a bit, and his eyes welled up with tears, but I know he doesn't fully understand, since later that evening he asked, "Mommy, where's Pat?  Pat's at the doctors?"  And I have to try to explain it all over again.  He still asks, but after he asks, he responds to his own question with, "Pat's with God?"  "Yes, honey, Pat's with God now."  I respond.  He sees my pain, and keeps asking me, "Mommy, you ok?!"  "Let me gib you a hug,"  then he hugs me.  He says, "Mommy, let me gib you a kiss," and not only kisses my mouth, but my cheek, and my forehead.  It is the sweetest thing, ever. 

 

Pat's letter......

Well today was the hardest day of my life.  I know tomorrow won't be any easier, and it will only get worse from here.  I have a long, hard day ahead of me, so I can't write much.  I wanted to share a letter that I wrote for Pat.  I placed it in the casket with him, and also read it aloud at the funeral.  For those of you that weren't able to be at the service, I wanted to share it with you as well.

Dear Pat,

You are the love of my life, and I still cannot believe you are gone.  I cannot wrap my mind around never being able to touch you again, or hold you, or kiss you.  Everyone keep asking me how I am doing.  Well truth be told, I am not ok.  I have lost my best friend.  You were the one who I wanted to spend the rest of my life with.  You were the one person I could tell anything to.  My rock.  And now your life has come to an end, yet I feel as if mine has too.  You still hold my heart, and now it is shattered into a million pieces.  The future holds nothing but uncertainties, and I am so scared to do this on my own.  I am so scared to be alone.  I miss you so.  I feel so empty inside.

You were the most loving and caring person I have ever met, and you had the hugest heart.  Many people have said that I changed your life.  But the truth is, you eternally changed mine.  You showed me what it was like to be unconditionally loved.  You showed me the meaning of true love. You made me laugh, and knew exactly when I needed to.  You had that sparkle in your eye, and it melted my heart.

You are the most amazing person I have ever met.  I admired you for your courage, and strength.  You admired the little kids who had Leukemia, and other childhood cancers.  You always wondered how they kept smiling.  Yet you never saw the similarities.  You were just like those children.  No matter how much pain you were in, you always wore a smile.  I miss that smile.

I know you are in a better place.  You are finally free of pain.  You are at peace.  Yet that doesn’t make the pain in my heart any less.  And I feel guilty for wanting you back.  Back in my arms.

I look into Kayden’s eyes, and I feel so blessed to be his mommy.  Although with every look, it is a constant reminder, and it breaks my heart to know that you will not be around to watch him, or any of the kids, grow up.  Just know, I will make sure Kayden will grow up knowing who you are.  And Keegan will grow up remembering you.  I promise.  

Music was a huge part of your life.  You were always listening to some kind of music.  You had no bias, you listened to it all.  And I know it’s you sending me songs, of love.  I hear them on the radio, and I think of you. 

You always were the life of the party.  Always trying to make someone laugh, or at least smile.  Always clowning around.  All the memories, they keep flooding back to all of us, like they happened yesterday.  Silly stories like the dime story, when you were a kid, to when you always poked fun at me for being on the phone.  I know that’s you.  Sending all the memories back.  You are just trying to make us all smile once again.

You always said when you were cancer free, we were going to celebrate.  Well now you are cancer free, and we will celebrate.  We will celebrate your life, and we will celebrate that you are where we all long to be one day.  In heaven. 

I know you are looking down on us now, smiling.  I can’t wait to be with you again, and although it seems like an eternity away, I know it will be soon enough, in perfect timing.  When that day comes, I know you will be waiting at the gates, next to Jesus, shining your bright smile, and I will be at peace, at home, at last.

I also want you to know that I will honor you, as my husband.  I will do what you said, and what we talked about many, many late nights.  Trust me when I say, I will not let your courageous fight be in vein. 

My heart aches, and I long to feel your warm embrace, to be held by you once again.  I love you, and I always will.  You will forever be missed, and there will always be a piece of me gone.  My life will never be the same.  You will forever be in my heart, and on my mind.  You will never be forgotten, my Valentine.

Just remember, this is not goodbye, my love, it’s I’ll see you soon.  I love you, more.

Love,
Your wife,
Jen

It's feeling a little heavy.....

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.

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.    

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 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...

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....

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.

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.

• 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...

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!

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 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 :)

Not the news we wanted to hear...

Well Dr. Santala came in tonight and talked with us briefly about the future, and what it may hold.  Basically he told us that the phase I trials we were putting all our faith in, may not be the way to go.

Let me break down what I have learned about Phase I and Phase II trials.  Phase I trials are designed to test doses of an unknown drug.  For example...Doctors are testing Drug X.  In a Phase I trial, they will take, say 10 participants.  They will start those 10 participants on a very low dose of the drug for a determined amount of time.  Then they will add another 10 participants, the first 10 will stay on that lower dose of Drug X, and the newest group will be given a slightly higher dose.  They will add another 10 participants, the first two groups will stay on their doses, and the newest group will be given a slightly higher dose than the last....so on and so forth, until they find a suitable dose.  When they find what they consider a suitable dose, they will move on to Phase II of the study.  A new group of participants will begin the trials.  They will be given a dose of Drug X equivalent to the highest suitable dose from Phase I.  In Phase II, the doctors will see how well this new Drug X, performs in treating the disease/illness they are studying.

With that being said, Dr. Santala told us that he does not recommend that we follow through with a Phase I study.  He said that it is basically just testing the toxicity of the drug, and not really trying to treat any disease/illness.  He said that a Phase II study would be better.  This news was not the greatest, because if I recall right, many of the studies we were given to choose from, were Phase I studies.  Dr. Santala briefly looked over the paperwork we gave him late last night, but hadn't really researched any of it a whole lot.  He said he would look into them further, but didn't see any that really 'popped' out to him as being a good fit for Pat. 

The other problem Dr Santala brought to our attention is, Pat has multiple diseases.  He doesn't have JUST Chronic Myelogenous Leukemia (CML), and he doesn't have JUST Acute Lymphocytic Leukemia (ALL), and he doesn't have JUST luekemia in his Central Nervous System (CNS), he has all THREE.  Some of the study's focus on only ALL, and some focus on only CML, there was at least one that seemed to focus on both CML, and ALL, BUT, as far as I could tell, there weren't ANY that focused on all three.  He said he thinks the most damaging disease at this point, is probably the ALL, but all three need to be treated, and not just one of the three.

So, again, we wait.  We wait to see what Dr. Santala recommends.  I HATE waiting...it's the worst part of all of this!  

I am just so upset with the health care facilities in Oklahoma.  They were all ready to send us to a Phase I study, without even informing us what it entailed.  We thought it was going to be a good option, but in reality, we had no idea what we would have been getting into.  Like I said in my last post, they sent us packing with a handful of paperwork to decipher ourselves, and offered no support, or help to get through any of this.  I just find it so inconsiderate, and in-compassionate.  These are doctors that deal with terminal illness on a daily basis, I know, but you would think they would be in your corner every step of the way.  Instead they sent us out the door with a few clinical trials in hand, and didn't look back.  It's as if they were saying, 'well the ball is in their court now, to decide what to do next, and it's all off MY shoulders now'.  SOOOO frustrating!

Anyway, that's pretty much the extent of this update.  I appreciate everyone's efforts to get this blog around the world.  If you haven't done so yet, please share this with your friends and family.  It has been viewed from around the globe, and I want to see it to continue to be spread.  The more people that view this blog, the more people that will be praying for a miracle!  So, please, help me get our story heard by the world!  Thanks everyone, and goodnight!

Love
Jen :)