Get Your Rear in Gear

Sunday, May 22nd... MARK YOUR CALENDARS!!!!!! Please come and support Jon. The early registration deadline is April 30th. Go to the "get your rear in gear" website to register. Walking with him would be a wonderful surprise.

Tuesday 8am

Hope everyone had a great Easter weekend. Jon was pretty tired and rested a lot this weekend. He started a new med that has made him very tired. I am hoping to get something different with less side effects this week. This weekend we did go to another movie, "Water for Elephants". It was good, and he stayed awake the entire movie. Sunday we got up and had an egg hunt for the kids and then went to my relatives for brunch. Yesterday our wonderful friends and neighbors Mary Jo and Kevin did some spring cleaning yard work. Our yard looks awesome, thanks guys.

Wednesday 1:30

Jon woke up really tired today. He took his morning meds, played with Campbell a short while and went back to the couch to sleep. My mom and Papa Doc came over, so I escaped to due some errands. I am actually getting a relaxing pedicure at the moment. Jon does not see any doctors until next week. Homecare did come by to do his drsg change and collect his labs. His blood work continues to look good. His Alk Phos, which indicates liver function is now 387. It came down another 100 since last week. Normal is in the 100's.

Saturday

So we had an appt with the pain MD on Thursday. I wasn't sure what the plan of action would be. Jon had been soooooo tired and resting a lot at home. We had been out a couple times and when he sat down he would gaze off and literally fall asleep. He said he felt like he was drunk in a sense. The continual rate of his morphine was increased Tuesday, and since then it seemed to help th pain issue, but he was out of it. We needed to find a balance between pain and alertness. It was decided at the appt to decrease the morphine just a bit. Friday he was more alert, and even suggested going to see a movie. We went to an afternoon movie and he stayed awake the entire time!! It was nice to get out and know he was comfortable. His blood work continues to improve, which is also good news. Next week we have an appt to discuss a possible nerve block, which would block some nerves around his abdominal area.

Wednesday 8am

Homecare came by yesterday. We have an awesome nurse, Ken. He has been a great advocate for Jon. We got his morphine dosage increased. It takes a bit to see if it works. He is sleeping now and I am hoping for him to have a great day.

Monday 1am

Here I am again at 1am. I do not have a facebook page, but Jon does and I use it. I just discovered how to request similar friends, so I thought I would add a couple of my own :) . Someday I will create a page of my own, when I have some free time. Nightime is the only time it is completely quiet, so I can think and get important stuff done, or at least make a list. Today we walked around the MOA early in the day. Then Jon rested on the couch the remainder. He was having some horrible pains this evening. I am going to make sure the pain team is told tomm. I know there are other options we haven't tried yet to help him. It is horrible to see him suffer and put up with the pain, when we haven't tried other meds. He is such a trooper. In agony he walked the mall today. Even though I could see it in his face, he said he was fine.

Friday Evening 11:30

Up again, watching a Lifetime Movie. I am hoping Jon sleeps well tonight. He has not been sleeping well at night. Today he told me that the pain wasn't bothering him, but being tired was. He has been resting and napping during the day. Not long ago he was go, go, go and I was wanting to nap. Thank you for the continual support. We love the voicemails, text messages and mail.

Thursday 1am

Thought I would update, since I am awake. Jon went to see his oncologist yesterday. Everything checks out well with her. His labs continue to improve. On exam his liver is not enlarged. This was the 1st follow-up appt since he left the hospital. We did discuss the ongoing pain issue, which was deferred to the pain MD. Jon continues to deal with an increase in pain around his abdominal area. He keeps telling me if I ask him about it, "I will deal with the pain if it gives me another day to be here". He will never give up. Sometimes I have to stop and remind myself how sick he really is. I wish I could just switch places with him for a day, so he could have some relief. Our journey continues, one day at a time. Please remember to tell the ones you love how much they mean to you. You never know what tomm may bring. Life can be so much shorter than any of us realize.

Sunday

Jon had a rough weekend trying to get his pain under control at times. Saturday he was really hurting rating his pain 8-9 out of 10. Now he has a tremendously high pain tolerance, so I knew it has been bad. We are going to call the pain clinic tomm, and see what else can be done. We meet with his oncologist mid-week. Hopefully, he will sleep well tonight.