Breathe in, breathe out

Tomorrow is Jake's 10th birthday.  Jeff never grew up celebrating birthdays but tomorrow means a lot to him.  His baby is just a little bit older.  He wishes he could be around to see his children get a little bit older.  I've said it before, that it's what hurts the most.  But we are trying our best to be happy and celebrate all these moments that we have together as a family.
Today was a long, hot day.  Why does this summer have to be so brutal in so many ways?  Luke and Jeff worked on a plow most of the day in the heat.  Jeff is worn out again.  I want him to rest more ..... because..... I just think he should.  And he never wants to rest. 
I read a beautiful article today that has been in my heart all day.  It said to breathe in love and spirit and breath out sorrow.  Yes. 
I'm going to try that.

Leta

Peace

Peace is a very thick subject.  Sometimes it's unobtainable and sometimes it flows so easily.  It's what Jeff and I struggle with a lot.  Mostly Jeff because he has so much more to accept.  I think it is something very important right now and I encourage him every day to have peace.
 Jeff worked hard today.  He shipped cattle today and I went out to check on the process and found Jeff on his favorite paint horse, riding straight and tall in his saddle.   He was in a pen cutting off cattle to be sold.  Cutting cattle on his favorite horse! Oh thank you God for that wonderful morning!  Luke was with him and our excellent cowboy, Sam. But you could tell Jeff was the man in charge.  I sat in the car and cried like a baby.  Luckily I took a picture and will have it forever - Jeff was riding up to the car and giving me a thumbs up.  That's my guy. He's tough and  he's still in the game.  He's still living and trying to enjoy the things that mean the most to him and I'm so glad he had a good day. 
You know what he said to me tonight?  He asked if I still believed in miracles and if I thought he would really be okay. Oh babe, it's my wish.  It's my wish for my true love to be beside me through out my life. And yes I believe in miracles.  But we also understand reality.
So after a very physical day Jeff is exhausted to the core.  We talked and he struggled just to stay awake at 6 o'clock tonight.  His emotions were very raw and we talked about peace again.  We talked about all of our blessings.  My cousin John taught me a lesson a few years ago that I share whenever I can.  Whenever you receive love and grace in your life, it is a ripple effect from all the love and grace you have put out into the world. I love that and hold on to it often.  It helps me accept all the grace.  I reminded Jeff of that.  We are receiving so much love it is indescribable.  I told Jeff that his life has been important.  He has been full of goodness and love to so many people that we are feeling all that love mirrored back to us today.  That calms us and lets us lean closer to peace.  We are leaning.  It's hard.  It's hard to want to live but accept death.  It's hard to die when you're young and strong and in your prime.  It's hard to die when you have a family and children.  It is so hard every damn day. It breaks my heart it is so hard. If there were an easy way out of this deal we would take it. We would opt out of this agony. But it doesn't have to be easy and we don't have to like it -  it is just how life works.  But I do think, I know, as Jeff approaches the end of his life he needs as much peace as possibly.  Peace that he has loved.  Peace that he has succeeded.  Peace that he has helped others.  Peace that we all are born and we all will die.  It is our constant prayer.
Please pray for my tough cowboy tonight.  He's tough but very vulnerable to all of his feelings.  Please pray that peace centers his soul as he takes this journey.  And please remember to always put all your peace and love and kindness out into the world.  It will always flow back.  Get ready today for all the grace you too will receive.  It will put you on your knees!

Love,
Leta

Away for a day

The kids and I hover around Jeff most of the time.  One of us is with him at all times.  This is something that has never been verbally planned but it's a silent code that we all understand.  Jeff is ours and we are very protective.  And we don't want him to be alone.  So......  The kids and I left him yesterday and we are all fine today.  It was very hard for us but I think it was actually a good thing.  The kids and I went to a lamb jackpot show in Lubbock.  We debated for days and finally dove in and did it.  And Jeff was fine without us.  Luckily he's got super friends that came by so he wasn't alone.  It was good for all of us.  We needed it more than I realized.  The kids and I needed a day like that.  We had to work hard and work together.  It was hotter than the surface of hell but we did it.  We came home exhausted but the kids couldn't stop talking as they told Jeff all about our day.  We needed that distraction.  I'm glad we did it.  The kids didn't do well during the first show but rallied in the second show and did okay. 
The kids are still asleep this morning but Jeff is out and about feeding cattle.  Since my list of things to do is bigger than I am - I've decided to get on the computer and sip coffee.  There's so much less stress doing that.

Leta

Days

The days are just passing by.  Some fast, some slower.  Jeff is doing better and worse.  Hospice is doing an excellent job of managing his pain.  But we are seeing him decline.  He is weaker and sleeping more.  But still up and about a little every day.  He shipped cattle on Monday and rode his horse.  But I can't see many more days of that in the future.  He also got banged and bruised by a steer in our pens.  Yikes!  But I've noticed he is slightly proud when he tells the story.  It's just a simple reminder of the tough guy he used to be.

His quick zaps of radiation were Monday and Tuesday.  I hope they do the trick and stop some of the nose bleeds.  His nose is still bleeding but is much better.  Our friends, Kevin and Cara met us in the waiting room on Monday and sat with us.  And my cousin, Sus was there both days.  It was so comforting to be surrounded and not alone.  Thanks sweet friends!!

So we are just here.  Trying to keep it together, be true to it all and stay Jeff and Leta.  It's hard.  There is a distinct transition from partner and spouse to care giver.  It's nothing we want to do but we're thankful we have the strength to do it anyway.

Leta

It's still hard

The hospice nurse came out yesterday and she was so nice.  She put us right at ease and  took charge.  We loved that!  Jeff is taking specific medication for bone pain and nerve pain now and as of today they are working.  He feels much better and has eaten more today.  He went out and rode pens with both his boys today and feels like he can ride with Gracie in the morning.  What a blessing!

I went to a delightful baby shower today and had such a good time.  I laughed and remembered and had a fabulous afternoon. Sydnee Schacher is already blessed and she isn't even born yet!

I am thankful tonight for friends and memories of my babies.  I am thankful for getting to be a witness to pure joy.  I am thankful that Jeff's pain is being better managed and he is getting some relief.  We are always overwhelmed by all the grace, but humbly excepting it the best we can. 

Carrying on,
Leta

Radiation

We went to see the radiation dr yesterday.  He and his nurse were very nice and answered all of our questions.  At this point Jeff has decided to go ahead with two quick zaps of radiation.  They said it will greatly reduce the risk of his nose bleeding more. (Quality of life) And they said he shouldn't have too many side effects.  So okay.  For today that's our story and we're sticking to it. We went back today and they scanned the area and molded a mask for him. His two radiation treatments will be Monday and Tuesday and then he's done.  It sounds easy and I hope it is. Jeff is still having a little bleeding from his nose but very little.  However..... he is still extremely sore from the procedure.  When they blocked off the blood flow to the tumors they basically killed off some areas of tissue.  This is not permanent so it should start to feel better.  But for now he is in more pain than ever.  He has not been able to eat because the roof of his mouth is a giant ulcer.  He has lost almost 10 lbs in a week.  It's been very hard on him.  Dr Patel increased his pain medication for the second time this week. I hope he feels the relief from that soon.
It's been a hard day.  It's hard for Jeff to ride all the way to Amarillo and it's hard for me to put up with him in the car complaining about my driving and constantly wanting to stop and look at farm equipment. He is always wondering why I don't see the thrill in it.  It ain't cute shoes Jeff Smith! It's not my area. 
The radiation dr is at a cancer center in Amarillo and it is not a great facility.  I was very surprised to see what Amarillo has to offer.  It wasn't great.  It reassured us that MD Anderson was the best choice for Jeff and I'm so glad he received his treatment there. I'm glad he only has two treatments at the Amarillo place and then we will never be back to another dr.
Hospice called today and they are coming out tomorrow to meet with us. It's time.  It's past time.  As much as that statement breaks my heart, I know that it is the right thing for Jeff.  I have continued to receive criticism on our decision but we are standing firm on our choice.  No one really knows but us. And goodness!!! I hope you people out there never have to be in this situation. It's not something we want to do but it's something we have to and need to do.  It's because I love him so much.  I can't let him suffer at all.  Don't you see?? He deserves my best and I really don't know what to do at this point so I'm letting someone else be in charge. And I'll just follow their lead.  I know that no one can love him like I do but I hope someone can care for him  and meet his needs now - better than me.
Thanks for all the love and support. Agony doesn't even begin to describe this.  You are our soothing balm  and you ARE easing our pain. Please pray for Jeff and his continued peace and pain control.  Please pray for our children who are witnessing all of this and will forever be changed.  None of us are deserving of this.  No one is.  But it is. Not our punishment but simply our life, and what we've been given - the good and the bad.  Although we are sometimes mad and sad and questioning, we are not bitter. There is more peace and wisdom all the time. We are still looking for goodness in ourselves and everyone around us. We do believe in God and love and peace and sanctuary.   We are hanging on. Because of it all.

Leta

Relief!

Jeff got up at 4:30 this morning to go ship cattle.  He didn't ride a horse, he didn't drive a truck BUT he was out there.  His fatigue is obvious now but he continues to keep on going.  We made it to his appointment in Amarillo to get the packing removed from his nose (it's been in there 6 days - gag).  It was slightly painful to have it taken out because it appeared to be stuffed up into his brain.  But they got it and he feels SOOOO much better.  The procedure must have worked because there is not much bleeding.  There is some but nothing like before.  By the time we left the dr's office Jeff said he was done.  No more dr's and no more appointments.  The simple procedure took too much out of him.  But by this afternoon he told me to call the dr and make an appointment to see about getting radiation.  That's how it is these days.  Lots of highs and lows.  He ebbs through the day on lots of pain medicine.  So we will see about the radiation.  I honestly don't know if he is strong enough to do it.  If it has an debilitating side effects I know he won't do it.  They made it sound like a quick zap - but we'll see what it really is.  Jeff had major radiation 2 years ago at MD Anderson and it left him with some permanant damage and pain.  We can't really imagine what this quick zap will be. I guess we will meet with the doctor and see what he has to say.  I just want Jeff to have a quality of life for as long as he can.  It's hard to make these kind of decisions.  We're just taking it slow.

I've received so many questions about Jeff going into hospice.  I know it's hard to believe.  It is for us too.  Yes, our dr has said that it seems to be the time to start that.  Once we finish these treatments we will be  seeking hospice care.  They are the pain management specialists and they will know the best way to care for Jeff.  Especially when it gets to a point when I can't.  We don't look at it as something bad.  We look at it as help and care and professionals who do this best.  I am grossly unprepared to know anything about helping my husband die.  So hospice is a welcomed choice for us.  Please support us on our choice.  But if you don't agree please don't tell me about it.  Seriously.  I don't want to hear it. Which of course means I've already heard it. And I can't use my energy listening to you disagree with me. It's not your choice.  Hospice doesn't mean I want Jeff to die faster.  It means I want Jeff to live longer and more comfortably and with all his dignity intact. Full of grace and love for his family and friends and surrounded by the people that love him best.  Full of peace and acceptance and the love of his Lord. That's his wish.

Leta

The Next Morning

We made it home last night and held our babies!  Ahhhhh!  Jeff is very sore this morning but the bleeding seems to have stopped/slowed down.  He's not walking around holding a towel under his nose!  And I could tell by the way he was breathing in his sleep that it's better.  I think once he gets the packing out of his nose on Monday he will be a new man. I'm thinking of all the ways I can show Dr. Guttenplan our gratitude!

Today is starting out to be a normal day.  Laundry, dishes, grocery store - you know the drill.  I love the mundane tasks that keep me occupied and distracted.  Jeff is resting and is staying still like the dr told him to. We are still a little shaky but okay.  The kids took this a lot harder than I thought they would.  I think it's becoming more physically obvious that Jeff is very sick.  Denial works best when you can't see any cancer!  I shared my trick with Jake.  When I get very sad and overwhelmed I sit down and write my love lists.  I think of all the things that are blessings and that I love the most.  Jake liked that idea and we talked about his love list for a long time.  We are adjusting everyday.  We are having to do things differently and change the way we think about certain things.  We are doing our best.  I've switched to water proof mascara.  That seems to be working better too.

Love,
Leta

The Procedure

Today has been a crazy day.  We went to Dr. Guttenplan's thinking he was only going to removing the packing in Jeff's nose.  We had no idea!  Since Jeff's nose was still bleeding he didn't want to remove the packing.  So we moved on to Plan B.  He got on the phone and found a radiologist to do "the procedure". Thank you Dr. Guttenplan for taking charge!!!
We ended up back in the hospital, a place we swore we'd never be again.  But here we are.  They ran a catheter up through Jeff's femoral artery up to the blood flow in his face.  Crazy!  They injected dye to see the blow flow that was feeding his tumor.  Once they found it they cut off the blood flow to the tumor.  So it should stop the bleeding.  He said it appeared to have worked!  Yippee!  They also want to do a little radiation next week to the tumor - just a zap or two to show it who's boss.  That should also shrink it a little and cut off any other bleeding.  We are still in the hospital until 10 or 11 tonight.  Jeff has to lay perfectly still on his back to make sure his femoral artery has completely clotted.  We are feeling some relief.  I hope this procedure will give Jeff some relief and a better quality of life.  The fix isn't permanent but should last a couple of weeks or more.  Melanoma is smart enough to find a different blood supply.  But we'll take the time we have. 
We didn't even talk about hospice today.  Because once you are under hospice care they manage your care and your pain but not "procedures".  So as long as he is still seeking any treatment we will stick with Dr. Patel and Dr. Guttenplan.  That's the plan for now.  Who knows what tomorrow or next week will bring.
Thanks for all the prayers and messages.  We are feeling the love!  A special thanks to my Mom and sisters, Sally and Katie.  Thanks for sitting with me and cleaning out my purse.  Jeff loves to be surrounded by women!

Love,
Leta

Hospice

Jeff has had a rough couple of days.  Starting last weekend his nose bleeds got a lot worse.  Worse in that it bleeds constantly even when he's resting and even when he's asleep. We decided to go back and see Dr. Guttenplan (he's an ENT) to see if there was anything he could do to stop the bleeding.  He was very kind and took a lot of time with us.  When he looked in Jeff's nose he told us that all the bleeding is coming from new, growing tumor.  It was everywhere.  He packed Jeff's nose and we go back tomorrow to have the packing removed.  It was supposed to stop the bleeding but it has continued bleeding through the packing which we know is not a good thing.  After we saw Dr. G, I went by Dr. Patels to get a new prescription for Jeff's pain.  He is having to increase his dose every 2-3 weeks.  Dr. Patel brought me back and told me Dr G had called and given him the report about Jeff's nose and the growing tumors.  That in combination with the pain, he said it was time to get Jeff into hospice care.  Those were such hard words to let enter my ears because they couldn't be filtered and went straight to my heart.  We knew this was coming and I've been trying to brace myself for it, but it was a physical and emotional reaction that I could not control.  I don't want Jeff to die.  I'm not ready to let him go. I love him.  This is going too fast.  Jeff is pretty calm.  He told me a couple of days ago that he didn't think he would live a lot longer.  Funny how we can say things out loud to each other like that.  But he was very matter of fact and just wanted me to know.  I'm having trouble staying calm.  I like to be distracted but I cry about 100 times a day. If I didn't have 3 kids and a sick husband to take care of, I think I would go ahead and let myself be hysterical.  I'm walking on the edge.

So I wanted to let everyone know this because we make the hospice decision tomorrow morning.  Please hold us close in your prayers as we make this decision for Jeff.  We're not feeling very brave right now.  Things are a little scary and unknown.  We are going to have to trust a new bunch of people to take care of Jeff and do what's best for him.

We are praying for peace and acceptance.  When we get really scared or mad or sad we repeat our mantras: We are blessed, everything important in life we have been blessed with.  We are surrounded by people that love us.  Cancer can kill you but can't get into your spirit.  We love each other and our kids and our God.  Those things will never change. Those things will NEVER change.

I'll let you know what happens tomorrow.

Leta