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

Long Road to San Diego - - Every Option Explored

I am honored to write this blog for Sherrie, Joe and the Kahler family. It has been a long, grueling day for them.

My name is Ron Neilson.  I had the privilege of sharing this day with the Kahlers and now I am honored to write this blog.

This is the blog no one wanted to write.  This is the blog no one wanted to read.  The Kahlers are driving back to Phoenix from San Diego knowing that every option has been explored.  Dr Lowy took a great deal of time with us and concluded by explaining an operation now would simply do more harm than good.

Monday night into Tuesday morning was a long night for Joe and Sherrie as Joe was up often vomiting and in pain.  Sherrie lovingly took care of him to keep him as comfortable as possible using everything she has learned in these past months and applying medications as appropriate.  Tuesday's appointment could not come soon enough.  Then, early in the morning before sunrise Joe awoke and announced he is ready to go!  Sherrie had to calm him and tell him the RV and the others were not quite ready.  By 5:30 AM though, Sherrie, Amanda, Mike (Sherrie's brother), Doug (Candace's husband) and Mark (their cousin) settled Joe into the RV and began the long drive to the University of California San Diego and the Moores Cancer Center.

The RV was graciously donated for this trip through friends and the Kahlers are very grateful as it is unimaginable how they would have made this trip without it.  Yet, with all the bumps and shakes one gets riding on the highway, even in the comfort of a bed in a RV Joe was wearing out quickly.  Although there were  stops along the way Joe was exhausted when they arrived at UCSD.  It was 12:30 Pacific time.

I meet them here at UCSD.  Sherrie patiently got Joe cleaned up and changed.  Once cleaned and dressed we made it into the office and by 1:15 checked in for the 2:15 appointment.  Unfortunately we discovered that appointments earlier in the day encountered complications that delayed Joe getting in.  Sitting uncomfortably in the waiting room Joe sat patiently, not complaining.  Eventually they called Joe's name and we headed back.  We met Dr. Lowy's RN, Nurse Debbie who spent 25 minutes reviewing Joe's medical history with Sherrie, all his meds, his timetables, the current complications and areas of pain.  Sherrie then gave Joe some relief by administering pain medications there while the nurse looked on.  Debbie impressed all of us as she stayed to talk with Sherrie and Amanda about the Daddy Daughter Dance, Amanda's book PULLING THE CANCER CARD and this blog site.  She took her time reviewing several months back.  In all she was with us over 25 minutes.

At 4:10 Doctor Lowy and his assistant entered the room.  He talked very patiently with Sherrie as Joe simply lay on the examination table listening.   

He apologized for the three hour wait then examined Joe's abdomen.  He confirmed that the rock-like texture to the abdomen was from tumors forming.  Doctor Lowy impressed us, leading us to believe he is the best in his field.  He said he does surgery many times when others refuse, sometimes when his peers tell him he is crazy.  "Heck, sometimes I think I am crazy for doing some of the operations".  He then patiently explained why he would be unable to perform the surgery on Joe.  The multiple tumors are a tougher consistency than the intestines and any attempt to remove tumors would cause multiple tears, gaps, and holes in the intestines.  He said as bad as Joe is, surgery would only make him worse.  Best case and unlikely scenario successful surgery would only gain Joe a couple of weeks.  Most probable and worse case scenario since his intestines are like "noodles glued together" removing any tumor would lead to further complications and leave Joe with an open wound.  Doctor Lowy recommended Joe return to hospice and have them make him as comfortable as possible during his remaining days.

At this Sherrie explained this is what she was afraid of but hoped it had not come to this.  She is satisfied the Kahler family has tried every treatment available, every option has been explored.  She thanked Doctor Lowy.  Yet, she had one more question.  How long do you think he has.  Doctor Lowy said good question and he will give his best answer but we have to know doctors never get this one right.  He said "weeks, at most, a month".

As the California sun was dipping into the blue Pacific Ocean the Kahlers had loaded up the RV and began the long journey home.

Long Road To San Diego  Part II

Strength

I do hope Sherrie will include this in Joe's Game Plan as it is important for all of you to see the other half of the story.  This is Ron Neilson writing again, continuing the story.

Sherrie is an incredible woman.  God bless her.  Joe, you've done well.  Sherrie rightfully tells us how Joe has gone through excruciating pain and difficulties yet soldiered on without a complaint.  Yet she has not talked about herself.  Sherrie is as tough of a woman as they come.  She is as strong as any woman I know.  She stood there listening to the doctor describe the tumors inside of Joe and how hideous his situation has become and what his body is going through.  Standing strong, looking straight at the doctor she then asked the doctor how much longer does Joe have.  The response surprised her, thinking there was more time, yet she did not flinch.  She has been there for Joe since day one taking care of him, nursing him, doing everything she can for him.  Each day gets increasingly tougher and more complicated for Sherrie, yet she does not complain and is always the first to smile.  Her strength is truly amazing.

The Kahlers are blessed with you, so many loving friends and relatives.  They so appreciate the hundreds of Valentine's Day cards, letters and greetings you sent.  Sherrie reads these to Joe and this gives them pleasant moments in their day as if escaping, even for a little while from all the gruesome cancer unpleasantries.

I have come to know the Moore's Cancer Center all to well and thus could help them through their day here.  I was in the room when Doctor Lowy gave Joe, Sherrie and Amanda the devastating news.  It was truly painful and one of the saddest moments of my life. 

Once outside the hospital Sherrie mentioned to me her new plan is to spend as much time with Joe enjoying the good moments.  She looks forward to the times the two of them will laugh, the smiles, the uniquely Joe comments he will surprise her with.  Each coming moment will be treasured.  The Kahler family will have an opportunity to share in some of these moments. 

All of us are blessed to know this truly beautiful, amazing and strong family.

Your continued love, support and prayers for this family are greatly appreciated.

 

Happy Valentine's Week

Our mailbox has been overflowing with Valentine Wishes and they could not have come at a better time.  Joe continues to fight the pain everyday.  He is up at least once, every 2 hours, 24 hours a day.  He vomits throughout the day, has lots of problems with ports and drainage bags.  My heart just aches for him.  He is doing everything he possibly can to make the San Diego trip and hopefully get some good news from the surgeon.  We are still planning on leaving Tuesday morning in an RV.  I'd like to thank Sheri Sampson for arranging the rental for us and BIG thanks to Back Roads RV Rental for loaning us the RV free of charge.  I just can't thank them enough for helping us out and being so generous. 

Speaking of thanks, I want to thank all of you for making our Valentine's week so special.  We received signed boxing gloves that read "Joe Kahler, The Greatest of all Time", a  rosary from Rome blessed by Pope Francis, funny cards, home made cards, serious cards, cards with past stories, cards with jokes, cards from children, cards from all over the world, cards from folks we don't even know.... I have been reading the cards to Joe every night before his meds.  He always asks to delay his meds so he'll be more alert and can really enjoy the cards.  It is truly our favorite time of the day.  It reminds me of when Joe and I had children.  We always made sure the girls said their prayers at night, followed by stating their favorite thing for the day so they would always put their head on the pillow thinking of God and positive things.  Joe and I are doing the same thing every night with your cards and prayers.  Thank you so much for giving us the gift of prayer and positive thoughts.

I will be posting Wednesday with an update from the surgeon visit.  Keep those prayers coming for relief for Joe. 

Thank you from the bottom of heart and hope you all truly know how special you have made this journey for us.

XOXO
Sherrie & Joe

Road Trip Ahead

We are headed to San Diego to meet Dr. Lowy on Tuesday, February 18th.  We talked to the office today and they wanted to make sure we were mentally prepared for anything.  They stated that Joe's case is bad and they may not be able to do anything.  I explained to them that we understand completely, but we had to make sure we had exhausted every avenue.  We also understand that Dr. Lowy specializes in this cancer and if he says nothing can be done, we would respect his opinion and stay on Hospice.  On the flip side, if anyone can help Joe, it would be him.  Either way, we will know the direction we are going after we meet with him.  Because Joe can't travel 6 hours by regular car, we will be borrowing or renting an RV.  This way Joe can be medicated and sleep in a bed the entire way there and back.  My brother and son-in-law will be taking turns driving for us.  We will be meeting the doctor at 2:15 pm and will head back immediately after the appointment.  If the surgery is a go, we will have to return after they get it scheduled. 

Tuesday can't come quick enough.  Joe had a really tough weekend.  He vomited so much that the drainage tube in his stomach came out.  It was horrible.  I had to take him to the ER for surgery to replace the tube completely.  Luckily I called the only surgeon I know at Chandler Regional and he was on call.  I explained the situation and he had everything set up for us when we arrived.  The ER was packed and folks were waiting for hours. We got in within 5 minutes.  The nurse told me that Dr. Flamm said we were the VIP's.  Not sure that is a good thing considering how we got to VIP status, but it was nice that everything went so smoothly.  Joe's new tube is secure and working good and the only downside is I caught a cold somehow.  I am back to wearing gloves and a mask at home and staying in a separate room so Joe won't get sick. 

I know several of you want to come visit and we would love to see you, except that Joe is just not up for visitors.  He is only awake about 10-15 minutes every 3-4 hours.  The pain is just so intense that we have to keep him medicated to keep him calm and keep as much stress off his body as possible.  I will let you know the minute he can have visitors.  I know it would lift his spirits to see you all.

Keep those prayers coming.  As soon as we think we are done, your prayers miraculously lift us again.

XOXO
Sherrie

Nothing is Final yet

Sorry for the delay in posting, but things keep changing on a frequent basis.  We had the call with the San Diego surgeon and we had hope.  We hung up and had more questions.  Joe got worse, Hospice came back over and we had no hope.  We called back to the doctor and had hope.  They had more questions and we lost hope.  As it stands now, we are going to talk to the surgeon again (we were hoping today, but he got tied up in surgery so probably Monday), based on the things that have been changing with Joe this past week.  The surgeon is wonderful and wants to help Joe in any way he can.  Joe's case is just so bad, there just may be no physical way to do it.  In the meantime, things are getting worse for Joe.  There are some days he can't get up because the pain is so bad and I have to keep him heavily medicated.  His vomiting is increasing and his energy level is almost non-existent.  Hospice is doing a great job supporting us and keeping Joe as calm as possible.  We were able to get him home from the center and he is much more comfortable here, surrounded with family.  In addition to all of this, our family dog started acting funny and we noticed some lumps on her.  I took her to the Vet and she is full of cancer.  They put her on medication for the pain and she seems to be doing good.  She is eating, barking, wagging her tail and staying by Joe's side.  She loves to sleep on the floor next to Joe all day long.  When things change for her, we will have to put her down.  It's hard to believe, but we have to accept it and do everything we can to keep her happy while we can.

Thanks to everyone for staying by our side through all of this.  We try not to "ride the roller coaster" of emotions, but it's just been near impossible.  Joe said to make sure and thank everyone for him.  He hasn't been able to talk on the phone or text or email, but believe me, he is so appreciative of everyone's support and love.  He broke down and just cried today talking about it.  He feels (as we all do) that we have been so blessed by all of you.  We can't thank you enough.

Love,
The Kahler's

Message from the Skotaks

Shhh...it is a surprise. With Valentine's Day right around the corner, we thought it would be a good time to bombard Joe with love letters. Sherrie said that he enjoys re-reading cards and letters that he has received. Let'a all send Joe a Valentine so he has a new batch. Include a joke, fun story, or recount a special time you shared with Joe. Sherrie said that "snail mail" works best, their new address is: 2114 E. Oakland Street, Chandler, AZ 85225.

Steve and Cece Skotak

Working on Pain Relief

I just wanted to give everyone a quick update on Joe's pain issues.  He did get some relief at the cancer center on Thursday; however, it was short lived.  We got him home and had several folks visit us to help with the pain issues.  We spent hours learning how critical pain control is and how important it is to prevent it, instead of trying to play catch up and stop it.  They actually said that the level of pain that Joe has could kill him before the cancer does, if we don't get it under control.  For that reason, they recommended that we sign up for Hospice of the Valley.  They specialize in pain control and quality of life.  Joe could not sign fast enough.  For those of you not familiar with Hospice, in addition to pain control, they help you and your family physically, mentally and spiritually through the end of life journey.  They don't take patients trying to fight the disease through surgeries, chemo...  They did say if the surgeon agrees to take Joe's case, we simply sign a release and we head to San Diego.  Very simple process.  So with that, it was an easy decision to get as much help as possible to manage Joe's pain and our mental state, while we wait for news from San Diego. Timing was good, because Joe had a relapse Saturday.  He was so excited for our granddaughter's 2nd birthday and made sure we did everything to get him there.  We stayed on top of the new medications, he took a long nap before the party with fluids and we went to the park.  It was perfect seeing friends and family and all the kids running around, laughing and just having a great day.  He made it for awhile and then the pain hit.  We got him home and he just went down hill from there.  I called Hospice and they came out and basically said he has to be in 24 hour care at a Hospice Center to get this under control.  We checked in last night and they suspect we will be here for several days.  They track and monitor the drugs and pain and will release him when they find that balance of pain/medications and alertness/quality of life.  It's a fine balance to get Joe alert with minimum pain when he is awake vs. medicated and rested to get through the pain.  I will say that this organization is absolutely amazing.  Joe said it's like staying at a bed and breakfast (even though he can't eat).  They treat you like royalty, with so much care and compassion.  It's so much better than having him in a hospital.  I will update the blog at the end of the week to let you know if our miracle comes through and we are headed to San Diego or if we accept our fate and head another direction.  Either way, we are comforted knowing God is watching over us, protecting us, guiding us and sending all of you to help us.  We are truly blessed.

With all our love,
The Kahlers