Waiting game

Dr Patel's office called yesterday to tell us we don't have an appointment in Dallas - yet.  They will not be able to see Jeff until they are actively enrolling for the trial.  No pre visits, no checking him out, no foot in the door or first on the list.  They will call us when they start enrolling for the trial. They said to expect a call in a couple of months and "No" they don't have an exact date.  Okay.

Jeff took the news great.  I was a little disappointed.  But like Jeff said, "I've really got to get this milo in the ground while we've got a little moisture."  He's got his priorities straight and he's doing what he wants to do.  So that's where we are. 

The weatherman says it will be in the 100's for the next week or more.  I can't think of anything worse.  I'm still painting at our new house. 4th of July is right around the corner and that means: cousins!, parades, the two story water slide bounce house, fireworks, lots of food and laughing till it hurts.  The kids should be getting their show lambs in a day or two and we have decided to set up the above ground (white trash) pool in our yard.  Summertime is here!

Leta

Big D

We met with Dr Patel today and he gave us the info about the trial.  He didn't know a lot but he has connections in Dallas.  He contacted the dr in Dallas that handles all his bone marrow transplant patients.  Come to find out the dr also does lots of research in melanoma.  He was immediately interested in Jeff - a man who is walking around and WORKING 8 hours a day with metastisized melanoma.  This dr also has connections because he will be taking part in the PD1 trial in Dallas.  So Dr Patel wants us to go to Dallas and meet this dr and find out more about PD1.  The one part of bad news is the trial doesn't start for another month or two.  But Jeff and I can commit to a quick trip to Dallas to meet a dr.  We can do that.  We have cousins and friends in Dallas and that immediately makes it less scary! Dr Patel also said it was important because so many people will be trying to get into the trial.  We want to be first in line.  That is if Jeff decides to.  We still don't know much info about PD1 and since it's a trial they won't have "statistics".  But........
We'll see.  If this is meant to be we will know it.  If Jeff doesn't want to do this then he doesn't have to.  He told me this morning he's had the best two months of his life - living in the moment, working, being with his family, loving and appreciating everything.  We really are pretty calm.  We truly believe all of this is already written.  All we have to do is have faith and make the best choices we can and stay on the path.  The big things are out of our hands.

Leta

New Trial

A couple of weeks ago there were some news stories about a trial cancer medicine that had some great results.  The trial was done at Johns Hopkins and it included people with metastatic melanoma.  It is called PD1.  We googled it and read the brief info there was.  I got online and checked out Johns Hopkins and come to find out they are just like MD Anderson in that you CAN'T just call them.  In fact they don't answer questions on the phone.  You have to make an appointment to see a doctor.  So we asked Dr. Patel to check into it for us.  He called around and his nurse called yesterday and said there is a PD1 trial in Dallas that we MIGHT be able to get into.  So many factors to consider.  I'm letting you all know because we are praying for clear answers about this. Is this a good decision for Jeff?  Does he want to try something else?  We have hope because the results have been promising and the trial is closer to us in Dallas.  We don't even know if Jeff's blood counts are high enough to do it.  But it's nice to feel hopeful and it's nice to have one more option.  This medicine is not a cure but it is something that could possibly give him more time- if he responds to it. So please help us pray for clarity as we learn information and make decisions.

My friend Libby and her son, Vaughn came to visit me this weekend.  Libby and I have been friends since kindergarten.  We had a wonderful time remembering so many things and staring at our kids and wondering how that happened.  Thinking back on our barbie bike, swimming pool, Charlie's Angels kind of days we realized we had no idea how our lives would turn out.  And the way they turned out were made  up of things we could never have imagined.  But........ looking at our beautiful, happy, smart (ok probably ordinary) kids I think we are overwhelmingly blessed.  It was good!  Jeff and I say it every day - we have the best people standing strong and tall around us.

Jeff has been in better spirits the last couple of days.  He said yesterday, "My life has gone by quick, faster than I thought but more wonderful than I ever imagined."  It is such a blessing to hear him say those words because I know that he has more peace.  So thankful!

So thankful indeed,
Leta

The Spirit

Explaining death to my kids is a mighty subject to present.  Jeff and I want to be honest about it all but we also hate to cause our children any suffering.  We don't want them to carry this load.  But it is inevitable.  So we try to talk about it often but in small doses.  We try to remain calm and not get too emotional.  I don't know if we're doing it right or not but we are confident WE are doing it the right way for our family.  We have also found that keeping it simple helps us understand better too.

Here's the way we see it.

Death is just as natural a part of life as birth.  It happens to everyone.  Cancer is a horrible disease that can destroy a body.  But the reason we are confident and know that there is a God and that we DO go to heaven is because cancer can never destroy your spirit. Isn't that cool? Our bodies are not who we are. (Our outer crunchy shell) The part that makes us alive and who we are is our spirit. The good stuff is always on the inside. That is the part of us that is always with God - on earth and in Heaven.  And it will always be safe.  When our bodies on earth are finished they will cease to function.  But our spirits will always carry on.  They are the part of us that goes to Heaven.  That's as far as we've gotten.  We take it as it happens.

Jeff is weaker.  He is still out and about but he needs to rest more.  And now when he does too much his fatigue is overwhelming and out of his control. We have upped his pain meds and we have a dr's appointment tomorrow and I feel he will need to increase his dose even more.  The nose bleed issue continues.  Our house could be a crime scene!  We had cattle out last week and Jeff found them miles away close to a neighbor's that we don't know.  I was driving behind Jeff and watched him stop and ask the neighbor if she had seen our cattle.  He had blood all over his face and shirt.  I saw her horrified face.  Jeff said she asked him if he was okay.  I'm sure she thought he'd been in some sort of accident.  Sorry neighbor! 

Our move has been put on hold.  Jeff wants to be at home.  The place where he grew up and rasied his kids and grew his business.  He needs to be here.  Ok, babe. 

We are still holding on.  Peace and acceptance and calm are our goals.  Somedays we are close to those things.

Leta

Irreconcilable Differences

I've posted before about the job of caregiver.  I take my role very seriously but in the same breathe I must tell you it is the toughest job I have ever done.  But here is a break in the story.  A glimmer of hope and humor!

Jeff is still continuing to work more than he should - just as he's done his entire life.  And amid all the work and stress and cancer he still has nights when he can't sleep.  Insomnia has had a hold of him his entire life.  Dirty rotten whore!  And did I mention that I'm a big sleeper?  Gotta have it!  At least 8 hours.  We've been mismatched from the beginning! 

So Tuesday night I was asleep and Jeff was not.  He usually just gets up and roams or watches TV.  This particular night he decided to do some business and was busy at his desk.  That was all normal and good untill....... he woke me up at 2 am to ask where our deposit book was.  Repeat.  HE TURNED ON THE LIGHT AND WOKE ME UP AND ASKED ME WHERE THE DEPOSIT BOOK WAS AT 2 AM!.

Luckily I was in a deep sleep and was unable to speak and was able to go right back to sleep.  However, the next day we did discuss it.  He had no idea that I would be upset or bothered by his act of selfishness.  Lucky for him I explained it in a way he could TOTALLY understand. 

I spy

Jeff and his boys were moving cattle across the road.  It was just a handful of cattle so they were only using the pick up and the four wheeler.  Guess who was driving the four wheeler!  They called me to block the road so I had a good view of Jeff Smith as he caught air jumping the ditch and fish tailed onto the caliche road.  At first I was worried until I looked at his face as he sped down the road.  He was wearing a GIANT smile!  Woo hoo for still being a boy and loving a little danger on a Monday morning! 

Summer

School is out and that means a new season for the Smith's. It is officially summer to us.  Two months ago we didn't know if Jeff would see this day but he is still pushing on and living life everyday.  In fact, he is outside right now riding pens with Luke.  Yes, he is still on a horse.  He amazes me everyday.  But being outside, right in the middle of everything is where he wants to be. Everyday we are reassured that we have chosen the best medicine for Jeff: a dose of work and sunshine, being with his family and counting his blessings. It seems to be working.  Jeff is somewhat weaker but not tremendously so.  He works in the morning and comes in to rest in the afternoon.  Usually he drives around later in the day to check things.  His pain is being managed and he still has things to smile and laugh about.  He got together for a mini high school reunion and was touched to the core by old friends and all the memories and stories that went with them. 
As hard as this is, he is thankful everyday.  He is continuing to stay calm and feel peace.  Although the fight for life is still in him!
We are now agreeing that he will be strong enough to move to our new house in a couple of weeks.  We have put off making that decision based on how he was feeling.  He has even caught some of our enthusiasm and is looking forward to our new place.  Please pray that we can get through that transition smoothly.  Please pray that it will quickly feel like "our home". I'm especially praying that our kids will have time to make some memories with their Daddy there.
We continue to feel the love and support from so many people in our lives.  We have surrounded ourselves with a mighty force.  However, there are a few people that continue to cause Jeff  much stress and anxiety.  These are people that Jeff cannot let go of.  Please pray for Jeff and those relationships.  It's his toughest thing right now.  He is such a good man and continues to always try to do the right thing by them.  I often fear they are taking away all his energy but I feel like my hands are tied.  I am helpless in my love and protection for him.
But I know this is something Jeff feels he must do and a weight he must carry.  I however, could snap at any moment and tell everyone EXACTLY how I feel.  I'm just trying to keep my mouth shut.  But really, what are the odds of that?
Our journey is continuing on.  We don't know what exactly is next on our path.  So glad to know that you are all walking with us!