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

More appointments to come

We had 2 appointments this week and they did not go well.  The surgeon said he could not operate on Joe.  He was extremely nice, caring and concerned, but it was clear that Joe's case was just too much to take on.  He explained all his concerns and explained that he could actually make Joe worse than he is now (although that's hard to believe).  We just talked to the San Diego surgeon's office and they need more information on Joe before they can say if they can help.  We are sending the rest of the information over today and are scheduled to talk to Dr. Lowy on Feb 6th.  In the meantime, Joe has taken a turn for the worse.  The pain is indescribable.  We had no sleep at all last night and I took him to the cancer center first thing this morning (he does not want to go to the hospital).  Dr. S. and Kay (his assistant) immediately took Joe and started treating him for pain.  They are setting up a new pain control plan for home, so I will be getting more help, more meds and more lessons on pain control.    I wish I had better news.  This is more difficult than I could have ever imagined.  Joe is truly the strongest man I have ever seen in my life, but he can't take much more of this excruciating pain.  Please pray for pain control, surgery and strength for my girls and I to comfort Joe through this journey.

God Bless you all and thank you for everything.

XOXO
Sherrie

Quick Update

I just wanted to let everyone know that we have 2 doctor appointments this week - Tuesday and Wednesday.  We should know where we are headed by then.  It just can't come soon enough.  Joe's cramping and pain are getting worse.  He is exhausted from the constant pain.  He still gets up (although much later than he used to), gets his shower and heads back to bed.  He gets up throughout the day for drinks, bathroom and sometimes watches TV.  I treasure those moments.  Today our friend and haircut guy, David (Hair America) came to the house to give Joe a haircut.  We were thrilled since going there would have been so difficult for Joe.  Our family, friends and support group are amazing.  I'll be updating the blog Wednesday evening or Thursday morning.  Thanks to all for everything you do to get us through each day.

With all our love and thanks,
Sherrie & Joe

Update on Test

We finally survived the test.  It was much worse than we thought.  We went Friday and after being there over an hour and lots of calls to the surgeon, it was determined they didn't have the right tools to get the contrast into Joe's bowels, so the test was postponed until Monday.  We went back Monday and spent 6 hours trying to get the test done.  They couldn't get the contrast past the main blockage and Joe got very sick.  They finally said they had to give up because he was getting so dehydrated and was extremely sick.  The nurse met me at home and we were able to get him fluids and medications and get him to sleep and avoid a trip to the hospital.  We went back today for more X-rays (with whatever contrast was left over from the day before) and had the tests complete.  They just aren't sure if the tests will yield enough results.  They sent the results to the surgeons and we are waiting for the surgeons office to call and set up an appointment to review the results with us. Hopefully, we'll know something within the week.

Keep those prayers coming.  We deeply appreciate your continuous support.  Joe just said this week how amazed he was that you guys still support and pray for us.  We are forever grateful.

XOXO
Sherrie
 

Surgeon Update

Just a quick update to let everyone know that we have 2 surgeons looking at Joe's case.  We have been turned down by several, but Dr. S. found a local surgeon and we also got a referral to a surgeon in San Diego.  We met with the local surgeon who was stunned by Joe's case.  He said he wanted additional tests before he makes a determination.  The surgeon is San Diego wants the same test and will have a phone consultation with us after we get those results so we don't have to transport Joe unnecessarily.  From there, we will determine next steps.  The test is a small bowel follow through where they will inject contrast in Joe's stomach and x-ray it for 3 hours going through his system.  They want to see if he only has the one major blockage or if there are several blockage points.  If there are several, they have both said surgery would only put Joe in more pain and they would not be able to clear the blockages.  He doesn't have enough intestine left to remove more blockages than the one we know about.  The test is scheduled for Friday and we will get the results next week.  I will update the blog as soon as we know those results.

Thanks for your ongoing prayers. 

Sherrie