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

We are nearing the end…

First of all, I want to thank Ron for writing the hardest blog to date.  It was a blessing to have him do that for us.  We just couldn’t function after hearing the news and spent several days coming to grips with it and begin our grieving process.  Hospice met us at home the day we returned from San Diego.  The doctor, nurse and counselor all came.  As most of you know, they are just wonderful and are staying by our side as we need help. 

Right after we arrived home, we had lots of family at home.  Joe made the comment that he was sorry he wasn’t able to finish the remodel of our new home (the entertainment center did not get done).  My brother and nephews heard that and said “oh, we will finish it Joe”.  With that, our house was under construction for a week and it was total chaos.  Joe just loved it.  When he would wake up, he just wanted to sit and watch the guys work.  It was a mess, but so worth it. In addition to building the wall and shelves, electrical outlets, lights, stone…, we changed out the doors to glass to move the electronics below.  We found a company to do that for us and when they heard Joe’s story, they would not let us pay.  Thank you Patriot Cabinets (Dave and Cindy) for your generosity.  If anyone needs custom cabinets, doors or furniture, please give them a try at patriotcontr@cox.net. 

 Attached is a picture from last week of Joe standing with my brother and my nephews Mark and Matt in front of our beautiful family room.  Joe comments about it every time he walks by and always wants to sit in that room and just look at it. 

Our 2 weeks has passed since we saw Dr. Lowy.  Joe is declining, but still doing his best to make the situation as tolerable as possible.  He is one tough guy.  He sleeps on and off during the day and really struggles at night.  He still wants to get up and walk by himself and do everything he used to do, but his body just won’t allow it.  He has begun “leaving us” throughout the day and night, and then he comes back.  He says things from his past, he says things that make no sense and then he says things from the heart.  He still throws in a laugh once in awhile too. Those are the moments we cherish.  His body has started rejecting his TPN (nutrition) and some of his organs are starting to shut down. His body is changing much quicker now, which indicates the end is coming soon.  This is honestly, the most difficult thing we have endured since he was diagnosed back in December of 2011.

The girls and I are still administering his medications, taking care of hygiene and everything possible to make Joe comfortable. We continue to read cards, emails and messages to him everyday.  Hospice has said they will support or take over the care whenever we are ready.  We just aren’t ready yet.  They come over almost everyday and do everything possible to help us, but we just feel Joe still knows what is going on, he still recognizes us and we are the ones he wants right now.  We are nearing the time when we physically can’t do everything though.  Joe has tried getting out of bed and has fallen a few times.  Luckily, he was not hurt, but it is difficult to lift him and get him settled.  He can walk short steps with assistance, he takes showers with a shower chair and he still drinks Mountain Dew, Sunny D and water.  He doesn’t always remember what is going on and frequently forgets he has cancer. He did remember this morning and wanted to talk about it.  It was so hard, but I asked him if he was scared and he said “No, not at all”.  His faith is carrying him through.

We cannot thank all of you enough for carrying us through this journey.  Joe had wanted to write the blog and thank you guys himself, but unfortunately we didn’t get to it in time.  He is no longer able to write or read on his own, but he did tell me to make sure I thank you guys.  He said his cards and all the support were the best thing that has ever happened to him. He truly meant it when he said at the Daddy-Daughter Dance “I am the luckiest man on the face of this earth”.

We love you and thank you all so much. 

The Kahler’s