Stronger, Yet Weaker

I’m happy to report that Joe has gained 5 lbs since they increased his TPN.  It has given him the strength to walk short distances on his own without falling.  He loves it!  Unfortunately, his pain level continues to increase as the cancer grows and the toxins (combined with his pain meds) are taking over and we are losing Joe mentally worse than ever before.  In addition, he still doesn't sleep longer than 2 hours at any given time.  A whole lot of tears and un-pleasantries come with memory loss and excruciating pain.  Out of respect for Joe, I won’t go into the details, but just say that everything is becoming harder to manage and harder to witness.  Hospice is very concerned about the effect this may have on the girls and me and also worried if we can even physically handle Joe during certain situations.  They want me to move him to the Hospice Center so they can manage him 24/7, see if they can do anything different with his meds and take over so the girls and I can be the grieving spouse/children instead of being caregivers/grieving spouse/children.  I understand completely what they are saying, but I haven’t mustered up the courage to say OK yet.  I suspect it is coming as there are certain things that are almost unbearable.  I have told them that I won’t consider anything until after Joe’s 56^th birthday, which is Sunday, May 4^th.

On a good note, Joe likes to get outside everyday so we put him in the wheelchair and take a stroll in the early evening.  We’ve been watching a video our dear friend Susan put together for us called “This Is Joe.”  It’s been so helpful for Joe to remember certain people and events in his lifetime.  He still lights up when the grandkids give him those big “HI PAPA” yells and hugs and kisses.  Our youngest daughter, Shelli is turning 20 tomorrow, so we have been talking about how exciting this is and that our baby is no longer a teenager.  Joe seems to understand that milestone as well. 

As always, thanks for your never-ending prayers and support.  We seem to be coming closer to the end and I just ask that you pray for Joe’s comfort and peace.  He told me that he is ready, he isn’t scared and he knows it’s going to be wonderful beyond anything he could imagine.  He deserves it.  He is truly amazing.

With love and gratitude,

Sherrie

Easter Week

As a Pastor said this week “Jesus is victorious in pain, suffering and death. We need not worry. ” It reminds so many of us of Joe’s journey.  While his pain and suffering continue to increase, we trust in the Lord that soon his pain and suffering will cease.  Until then, we are all suffering along with him.  As only Joe can do, he tries everything he can to minimize our pain by trying so hard to make things as “normal” as possible. He talks, visits and jokes with us even though we know he is suffering.

Joe had a couple bad falls this week.  He got confused when the doorbell rang and went out the garage door while I was in the shower and Shelli was answering the front door.  He fell and hit the car.  His elbow swelled up like a softball and became “fire engine” red.  Hospice said he developed an internal infection from the falls and we had to put him back on IV antibiotics.  Happy to report they have worked and he no longer complains of elbow pain.  The other fall came in the bathroom and I couldn’t catch him in time.  He scraped his arm and bruised his side.  Typical Joe, no complaints.  I just apply antibiotic cream and bandage him up.

Easter day was a blessing.  We never thought Joe would be with us to celebrate this glorious day, so that in itself was our miracle.  We had 20 family members there and Joe sat at the table with us and enjoyed his Popsicle while we ate an Easter feast.  Joe was so happy he could do that and so happy we kept things “normal”.  We had an Easter Egg hunt for the kids (Joe was too sick to join in or watch), but Edison and Quinn did share all their excitement about the day with Papa Joe while he lay in bed listening to them.  It was another blessing. 



Joe with his parents, sister Julie and Brother in Law Mike

Joe with Shelli, Amanda and Candace

Joe having Easter dinner with the Family



Easter night, Joe’s pain just escalated.  He never slept longer than 45 minutes at a time and became very confused and started hallucinating.  The flood gates opened on my end, which didn’t help the situation.  We held each other tight that evening and Hospice was there in the morning to evaluate the situation.  They suspect that the cancer that has been present on top of Joe’s liver is now penetrating in the liver.  The liver rids toxins from the body and when it can’t function, the toxins build up in the brain and cause these problems.  They’ve added another medication to Joe’s list.  We were hoping it would help him sleep more, hallucinate less and make him more comfortable (even at the expense of losing alert time with him).  The girls and I think it has helped, but not as much as we had hoped.  Maybe it will in time.  Until then, Joe continues to get up numerous (and I mean numerous) times a day -24/7, struggles more than he ever has and now has a constant pain level higher than ever before.  Our job is to continue praying for Joe’s comfort and to do whatever we can to put that Joe Kahler smile on his face...even if it is for just a moment. 

Thank you for doing your part with your prayers, support, cards, gifts and messages for Joe and our family.  You help ease all our pain with your love, prayers and support.

Happy Easter and God Bless you all,

Sherrie

T-Ball!!!

Joe and our son-in-law, Doug had always planned to coach all levels of baseball together.  Unfortunately, Joe is not able to do that, but Doug did continue on with the goal.  Joe was so glad and supportive.  When Joe heard Edison's 1st game was Saturday, he said he wanted to go.  The girls and I decided we would do everything we could to get him there.  At midnight Joe started to get out of bed and wanted to get ready for the game.  I had to tell him it wasn't until 10:00 am the next day, so back to bed he went.  We did get up in plenty of time to get Joe showered, dressed and give him some pain meds so he could make the trip to the ball field.  Joe couldn't walk to the field, but thanks to Hospice, we have a wheelchair for him.  We got there in time and Joe saw Edison get his first hit.  It was a classic T-Ball moment...swing and a miss, swing and a miss, swing and hit the ball, chase the ball, pick the ball up on the way to first base!  We will never forget it and laughs and joy that came from it.  Joe wanted to stay for the entire game, so we saw Edison play defense and hit the ball a few more times (and learn not to pick up the ball on his way to 1st base).  When we got Joe home, he was exhausted, but so happy he made it.  He said that he was so glad that God let him get to the game.  He also said he wondered if that was what God was waiting for...to make sure Joe got to the game.  We don't know, but just his words had us all in tears.

Here are some pictures from this priceless day.
 

Edison's 1st time at Bat with Dad (Doug) coaching

Joe and his grandkids Quinn and Edison, after the game

The rest of the week has been difficult.  Joe only sleeps 1-2 hours at a time.  He's had a couple bad falls (he continues to try and do things on his own), the pain is increasing and things are just challenging.  On another positive note though, after several calls and lots of frustration, I finally got the insurance company and Hospice to agree to increase Joe's calories from 545/day to 1100/day.  He was losing a pound a day and I really thought they were starving him to death.  I've come to terms that Joe will pass away from cancer, but I could not sit by and let him starve to death.  It is definitely helping and Joe doesn't obsess about food the way he was.  We'll see in a couple days if it helps put a few pounds back on him and hopefully give him some more strength.

Speaking of strength, thank you all again for the cards and notes and prayers and support.  We received breakfast at the door yesterday (thank you Heather Burris!) and some dinners and groceries and gift cards.  The support and love is truly overwhelming.  We sat with Joe today and read all the cards and messages that came in this week.  He was smiling from ear-to-ear.  He just said "this is amazing".  He's so right and we thank God everyday for bringing you all into our lives.

Love,
The Kahlers

That’s Our Joe

Hospice told me two things this week that really stuck.  One was “We (Hospice) are very good at predicting end of life…………except in Joe’s case.”  And the second quote was “You die like you live.”  It really helped me understand the end of life journey we are on with Joe.  Although they never met Joe when he was healthy, they told me he must have been extremely strong, quick to do everything, put everyone before himself, did anything for his family, never wanted to let anyone down and was really determined.”  Yep…that’s our Joe.  This explains why we are in week 7 of a journey that was supposed to be 2 weeks long.  No one is saying how long Joe has now.  He’s exceeded everyone’s predictions.

Things are tough though – mentally and physically – for Joe and for the rest of the family.  Joe continues to lose weight (lost another 4 lbs), is gone more than he is here and has more pain than ever before.  They thought he had another urinary tract infection, but turns out it is probably just the cancer and organ failure causing the problem.  I’ve had to tell him several times that he has cancer because he doesn’t understand why he can’t walk like he used to, why he has tubes and bags connected to him and why he sleeps on and off 24 hours a day.  This morning was particularly rough as he couldn’t figure all this out.  I sat with him for a long time today and explained every step of his journey from the first indication he was sick in November, 2011 to being diagnosed on December 3, 2011 to his seven surgeries, his treatments including chemo, radiation and experimental drugs to finally signing on with Hospice.  It was a painful, yet comforting discussion.  He seemed to recall several parts of the story and by the end, felt relieved that no one was “tricking” him, but instead just helping him.  And then the light bulb went off and he asked for his basket of cards.  The basket has been next to him in bed and we’ve been reading on and off today as he lay in bed.  It was so comforting for him to know and understand how many folks are supporting him and his family through this entire journey.  I’m guessing this is one of the reasons we are in week 7 of this journey.  As always, we owe you guys a tremendous amount of gratitude. 

XOXO

Sherrie