Sunday Lunch - Nephews Visit - No More Therapy

 Shiloh, IL  (Hi 91  Lo 70)

The continuation of Glioblastoma 4. 

Sunday we went to our son's for lunch. We love brats and they grilled some for us. I also needed my car washed. It  hasn't been washed since we started out in May to come to Illinois. Frank helped wash it and it's looking good. 

A report on Jim: The radiation doctor said to cut the steroid he's on to one half. That changes Jim so much he can't walk and his speech is even worse. I called the doctor on Friday to see if I could go back to full tablet of dexamethasone (steroid)  and he said yes. We still have another week before meeting with that doctor so I didn't want to wait that long. 

This is the week of learning. On Monday we had an appointment with Jim's primary doctor. She seemed excited to tell us something as soon as she walked in. She brought up a website about this cancer, that it's rare and very few doctors know how to handle it. She showed me a chart of how long people live in each section of the chart, concerning age and how he's doing now and what he's doing or acting. We discussed what we need to do which was hospice care. She wants it set  up now and if  he dies  sooner then she thinks, at least the hospice can take over  and keep the cops from  thinking I was at fault. I never heard of that, but seems to be the thing. She told Jim to try to communicate anything that's important. He hasn't been able to tell me much since the beginning. The thing with the whole meeting with her, I'd had already found on line. I'm in three groups of GMB on Facebook and learning a lot from the people that have gone thru it. The doctor basically said you need to ask the medical oncologist any questions and she's no longer going to be a part of the medical service. Luckily, I've already setup hospice so everything should be in place by next week. He's having more problems with walking and his right side is weaker which he can't use his hand very much even controlling the TV remote is a big deal. Eating isn't easy as it was and I've fed him one meal so far. He's also falling more this week. I found another great website with lots of support and knowledge. GMB never alone. 

Wednesday and Thursday my nephews, Dave and Doug, came from Michigan and Indiana to visit. We haven't seen them in a very long time. We picked up right where we left off with lots of laughter. Dave was the person that introduced Jim to me. We owe him for our 51 years together. 

Doug, Jim and Dave

Doug, Dee, Jim, Doris, Dave

My sister, Doris, came on Thursday morning to spend some time with the guys and when they left she stayed with Jim while I got a much needed massage and chiropractor appointment. I was asleep in minutes with the massage. She was so good and I relaxed fast with her. I'm back to once a month again which is MY time that everyone says I need. I was so thankful to find a duo because the arthritis in the neck has to be loosened up before the adjustments with the chiropractor. The dog in front of the door was watching me closely. I got there early and they were still on lunch. He's quite a friendly dog and being trained to be a therapy dog. 

The  OT,  PT and speech made their last visit  and have released Jim from therapy. It's not doing any good anymore. The heart doctor also called and said we don't need to go to the appointment next week. He has also released us from any appointments.  The MRI is still going to be done on August 10. The results should be the next day. 

Hospice came out today (Friday) to ask questions and tell us what's next. The chaplain did the interview and after we get the MRI and say we're doing no more treatments we'll sign papers next Thursday. They will come in with a doctor, nurse, care of all kinds and help with showers and hospital bed when needed. I feel like it's coming together. I don't feel quite alone. The next step is the nurse for physical evaluation. He's still trying to walk by himself and can't be trusted alone. Only God knows the day, but till then I'm doing my best to keep him safe, fed and happy. I just wish he could tell me what he wants or needs.  

Friday afternoon a dear friend of Jim's came over to visit from St. Louis area. They worked together when we lived here in the 80's It's was wonderful spending time with him. Frank came too and we did a lot of laughing. Thank you Steve for coming to see us.