I'm back for now

Hi everyone. It's been a while since I have had anything to say. Mostly because I have been having a complete emotional, physical and psychological breakdown. I had some time with my family back east (my sister, Barbara and her family) and I have now regrouped and am able to move forward with this most difficult portion of our lives.

Jon has been slipping rapidly in the last few weeks. He is very confused and paranoid (secondary to liver failure and narcotics) and in tremendous pain. He sleeps 20 hours a day and for the last week could maybe get up for a few hours to do some work at his desk or watch TV. Monday and Tuesday seemed the usual, but on Wed he slipped to a much more serious level. When I left for work I had asked him if he wanted some breakfast. He replied, "No, I'll get up in an hour and make it myself" (his usual MO). When I called to check on him at lunch he said that he hadn't been up, needed to eat, couldn't get up to feed himself, and hadn't taken any pain meds. I started calling family members to help and was able to reach our niece, Ann Lenting, who was close by and went over to feed Jon. When I came home form work he shared a light dinner with me of cheese, crackers and fruit then went to be early. His pain was reasonably under control at that point.

In the middle of the night he awoke in pain and said, "Doc, I just can't take this anymore. I hurt all of the time, I can't think and I can't get out of bed." I asked him what I could do for him and he said "End it". I cried all night and we lamented the fact that we both thought we could beat anything together but as Jon says, "It is what it is." I had to chuckle when right before we fell back asleep he said, "Maybe I'll feel better in the morning." Every day since he has been diagnosed he kept thinking that one day he would wake up and feel better, like when you've had a bad flu for a week.

This morning we had an appointment for blood draw, Dr. Linn and chemotherapy. It was apparent that he was really weak and fortunately Kristi accompanied us to the visit. The blood draw was first and then we saw the doctor. Jon's blood chemistry's were so bad that the doctor refused the chemo. I told him that Jon has had difficulty controlling his pain and I did not think the oral meds were adequate. At that point the doctor asked if we had considered in home Hospice. I asked him to explain exactly what that meant and basically we would have a nurse come to our home twice a week to manage IV meds for Jon (dialauded, his favorite) and address any medical, home or social needs that we have. We have an appointment with the hospice nurse tomorrow morning.

Jon received IV hydration and the meds that bind his elevated calcium so hopefully tomorrow he will be a little more cognizant. We came home and he immediately went to bed. Tonya and Tony came over to make dinner and Levi, Ericka, and Wyatt came by for dinner and a visit. Just to add to the drama of the day Elizabeth ended up with violent food poisoning and her teacup Yorkie was sick after surgery on Monday. Kelsey went up to Bellevue to take care of his sister and get her dog back to the hospital. He should be home any minute.

Right now we are all just physically and emotionally exhausted. My Mom and Dad are on there way out as soon as they can get a flight as is Staci. Hospice will provide us some support but we are now organizing friends and family members to sit with Jon 24/7. I can do most of it, but still need to work MWF so we are working out a schedule for those days.

Thanks for everyone who telephoned today, I'm sorry but I just wasn't up for much conversation. I am on my way to bed for the night.

Thanks to everyone for your continued prayer and support.