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

Things Continue to Decline

Before I get into whats been happening, I just want to thank our leprechaun for dropping this wonderful basket at our door, complete with everything Irish for our family.  What a wonderful surprise, but I sure would like to know who our leprechaun is, so I can thank you properly.  If it has to remain a secret, please just know what a huge smile you put of this Irish home! 

On a not so pleasant note, I need to share that we have hit a new, lower plateau this week.  It's been happening for the last 2+ years, but every time we get used to our "new normal", we get another "new normal".  At the beginning of the week, Joe was feeling good.  He just loved to take our short walks outside and said he wanted to go to a store and buy a pair of gym shorts.  We loaded him in the car and drove to Kohls.  With one of us on each side of him, we walked in the store, went straight to the gym shorts, picked out a pair, paid and came home.  Sounds like such a small task, yet it was HUGE in our world.  2 days later, things took a turn for the worse.  Joe's abdomen pain hit him so hard in the night that it reduced him (and me) to tears.  The pain was just so bad.  Hospice gave me plenty of leeway with meds and unfortunately, I had to use it.  Joe and I were up the entire night just trying to get the pain under control.  After several doses of medication, it finally worked.  Of course, the flip side with that is he couldn't walk, shower, shave, sit up or even talk to us.  We felt like he was gone.  Hospice has been working with us ever since to try and find our new balance of meds vs. some kind of quality of life.  Things are better and I am able to shower him and get him dressed each day, but his alert time is reduced, his restlessness has increased and his ability to grasp things is decreased.  In addition to that, his blood pressure has dropped again and he's lost another 5 lbs.  He now weighs 125 lbs, which is a 65 lb weight loss since the beginning.  All signs the end is coming closer.  As much time as we've had to adjust, it still is so heart wrenching with each new plateau we hit.  We try and make the best of every day, so our new thing now is to watch home movies when Joe has his 10-15 minutes of alert time in the family room.  We also still read your cards and messages each day to him. And as always, we just thank God for the time we have been blessed with Joe and thank God for bringing all of you into our lives.  Joe actually stated today that all the love and support he has received is what gets him through each day. With all that is going on with him (mentally and physically), he continues to state this over and over again. This is a clear indication of the impact you have all had on all of us.  Thank you all for this incredible gift.

XOXO
Sherrie

 

Ups and Downs

Literally – Joe has had so many ups and downs this week.  One minute he can walk and the next minute, he can’t stand up.  We had a scare earlier in the week when Joe took his worst fall yet.  We had just put him to bed for an afternoon nap and he had promised not to get up without calling for help.  I was working in my office, the girls were in the other room when we heard the crash.  Joe had gotten out of bed and fell face first on the bathroom floor.  His legs and arms gave out and he couldn’t walk and couldn’t get his hands to stop the fall. Blood everywhere.  Hospice came over and said it looks like he broke his nose and we had the option to take him to the ER or just work with it at home.  Since we got the bleeding to stop and he could breath, we opted to just pack it in ice and work it from home.  Joe would be so miserable in a hospital. The good thing about the fall is Joe clearly remembers it and finally realizes he can’t do what he used to be able to do.  We got a bed rail handle, a walker and a wheelchair.  The bed rail handle is great and has stopped many falls.  He refuses to use the walker or wheelchair (made me put them in the garage).  He said he’s just not ready, which is OK by me.  Most of time, he calls for help when he wakes up, but occasionally he tries on his own and we have to be quick to avoid those painful falls. 

The Up of the week was a surprise visit by Cheryl, Marianne and Carolyn Brooks from Pennsylvania.  There was a knock on the door and boy were we surprised.  It was an amazing short, but fantastic visit.  The other Up of the week was Joe’s walk.  He wanted to go for a walk, so with TPN and drainage bag in hand, we each got on both sides of Joe and walked down the street.  We stopped and took a picture of this memorable occasion.  It was great!  It was so Joe.  He’s just determined not to let anything stop him.

On the down side, beside the falls, Joe’s blood pressure is dropping, his pulse rate is increasing.  He has hallucinations throughout the day and night and rarely sleeps more than 1-2 hours at a time.  In fact, the last 2 days, he’s up every 20-45 minutes.  He thought today was Superbowl Sunday and was so disappointed when I had to tell him it was not.  We turned on the NFL channel and watched an old game instead. 

We still read cards to Joe, still laugh and visit and still treasure each and every moment we have left with him on earth.  As always, your support is clearly our strength.

Love to all,

The Kahlers

He's A Fighter!

Joe continues to amaze us all with his strength.  He has so many issues, yet he still gets up each day, showers, visits, prays and makes the very best out of each moment he has left on this earth. 

Bart and our friends from Honeywell Clearwater, sent these boxing gloves which state “Joe Kahler – The Greatest of All Time”.  It is the perfect symbol of just how tough Joe is.  We keep them on display in our entry way as a constant reminder of Joe’s fight and his strength.

Joe’s issues continue to get worse.  His kidneys are shutting down, which is causing a series of problems.  He developed a urinary tract infection which was horrible.  It caused so much pain, discomfort and hallucinations this past week.  We started him on an IV antibiotic, which has helped.  The only problem was it made him sick and he spent hours just dry heaving into a bucket.  We increased his pain meds as much as we could to help him sleep through most of it.  Looks like we were successful, as he is doing better now.   We had to cut his TPN (nutrition) back to 500 ML/day (he was on 1800/day) because his body rejects it.  It just can’t take the volume and he gets sick and his abdomen and feet swell.  He still walks to the bathroom, family room and the kitchen, but can no longer walk without assistance.  The hardest part is its Joe and it’s so hard to keep him down.  If we aren’t right there when he’s ready to take off, he falls.  He’s fallen several times (luckily nothing too serious), but it scares us so bad.  He keeps promising to ask for assistance, but again it’s Joe.  He just wants to do things on his own so bad.  He does let me shower him (and uses the shower chair).  He knows, without the help, he won’t get his shower!  He continues to leave us throughout the day as well.  It sounds like he mostly goes to play sports, coach sports or go to a sporting event.  He also sees people we don’t know and travels and who knows what else.  It doesn’t scare him, but he does get frustrated sometimes not being able to tell reality from his other visions.  But when he is with us, it’s magic.  We treasure the one-liners and his inspirational comments every day.  He still has us read to him at night and just cherishes the cards and messages that continue to come in.  Thank you all for giving Joe the gift of support, prayers and friendship through those messages.

Hospice continues to support us regularly.  They thought Joe had a few days left on earth a few weeks ago.  Now they just say “Wow…He is amazing”.  So as of right now, we have no idea when Joe’s time with us on earth will be done.  We try not to think about it and just try and embrace each moment we have with him.  We make him as comfortable as possible, we give him 20+ Mountain Dews/Sunny D’s/Waters each day, we keep the pain meds going so we can stay ahead of his excruciating pain and we just put all our faith and love in God and know that he will take care of the rest.

I know I sound like a broken record when I say Thank You All So Very Much!  But truly, you have no idea how much your prayers, support, friendship and love mean to us.  And no worries….even if we haven’t heard from you in awhile, believe me, we know you are out there.  The strength we get can only come from a support group like ours.

All our love and thanks,

Sherrie, Joe and family