Friday, July 30, 2021

Family Time and Downtime

 Shiloh, IL   (Hi  76  Lo 64)   Went from 105 to 70's with a storm this week. 

I would like to give a good word for those helping with Jim. I seldom do "ads" but the PT, OT and speech has been tremendous from the company of SIVNA. Southwestern Illinois Visiting Nurse Association. If you need help and you're in the St. Louis area (Illinois side) please give them a call. 

This week was fun and sad at the same time. Jim's family came in from NC. Sharon, Robin and Johnny stayed from Monday to Friday evening. Frank and his wife Angie had two extra beds for Johnny and Robin and Sharon stayed with us. The two gals are caretakers by trade so I knew their brother was in good hands. 

Monday morning the nurse came and I waited for her then went over to my sisters in Missouri. I wanted some down time and get some much needed sleep. I can sleep fairly well at nights, but it's not a deep sleep waiting for Jim to move or wanting to go to bathroom, so it was good to sleep nine hours straight. 

Our youngest son, Rick came down from Chicago and stayed in motel while he worked. They had a great time all meeting at our place in the evenings and being with Jim. Tuesday they went to Frank's for a shrimp dinner. The shrimp was caught in NC from the family members that shrimp for a living.  (Click on the pictures to enlarge). 

                                                            Frank, Jim, Rick

                                                        Robin, Sharon, Johnny with Jim
                                    Johnny, Rick, Jim, Sharon in the back, Robin and Frank
                                            Jim with Banjo, Frank and Angie's dog. 
Shrimp dinner, fried corn, hushpuppies, beans, fried potatoes and onions
Rick and Johnny
Robin and Sharon

While they were having fun and eating,  I was with my sister and her husband having a good time. She catered to me with food and rest. I went fishing in their pond which is loaded with fish. I got six fish. I never did get the knack to catch more or when you pull hard for a fish when the bobber goes under. I had a great time. 

The lake view
Carley loves fishing too. We catch them throw them back and she re-catches them. 

Then she crashes for the rest of the evening. 
When I got back on Wednesday afternoon, the place was full of people. We had a blast visiting and making Jim laugh.  The gals did a great job telling Jim to drink water and they gave him fruits all day long. 
When we got the kitchen cleaned up with one meal it was time for the next one. 

Rick took some shrimp home with him. 
Thursday evening it was a sad time saying goodbye. The family planned on driving all night back to NC and Rick left for Chicago. 
Rick, Jim, Johnny, in the back Dee, Robin and Sharon
It was so quiet when everyone left. We felt lost. Jim fell in the parking lot saying bye to the family. I'm glad the boys were there to help him up. On Friday we both slept late and Jim was really weak. The PT gal said when he over does it he'll be weak for a couple days. I'm hoping he rests up a bit. 

Info for those following along on Glioblastoma and for our records. I called the oncologist to ask about giving Jim  a full steroid tablet instead of one half. I was suppose to start decreasing the dosage to take away the steroid but with him falling more and talking less I wanted to see if the doctor would let me increase it back to one tablet a day. He did, so tomorrow we'll go go back to what he's been taking. I can't wait to hear about the MRI which is August 10. 

I made a doctors appointment for me today for a physical. It's someone our son's family goes to. When I gave her my name I was already in the system. That's the second time that's happened. We lived here for 12 years in the 80's at Scott AFB so we went to the doctors around here. I just don't remember who they are. Your past can follow you.

Friday, July 23, 2021

Unpacking - Update with Dr Appointments - Subtle Things

 Shiloh, IL   (Hi 93  Lo  73)

Sunday our son and wife came over (Frank and Angie) to empty boxes from the move in. We had 15 wardrobe boxes. They're big and you have to crawl inside them to get everything out. The big thing now is to find places to hide stuff. We have 3 closets so hopefully I can do it. The apartment is coming together and looks like we have had one box of non critical stuff missing, a few broken plastic boxes but all in all for what we went thru waiting on it to get here we're lucky. 

Monday was a busy day with primary doctor and lab. We had to be up by 8:00 to get to the 9:00 primary doctor appointment. She never came in to us till almost 11. She's a talker and by the time we left for the lab work she wanted done, it was 12:20 when we left the lab with a packed waiting room, it was almost 1:30 and we had to rush home to get there for PT at 2:00. I had to take him back for xrays on Friday.  At 2:30 we had the call from the surgeon. He didn't have much to say but I had sent him a picture of the surgery site for biopsy. It's not like he likes it, soo much scabbing, so I have to put warm cloths and wash with soap to loosen it up without tearing any off. That's my next "cleaning job" and will take a picture next week to show him and he'll call on the 19th of August to check it again. We're trying to keep from going to St Louis for an appointment, but still have to on August 11 to meet with the medical oncologist. 

Tuesday was a full day of therapy. First thing in the morning was the nurse to catch up to date with vitals and check the surgery scar that the surgeon wanted to have checked, she thinks it's doing ok and no infection. Next was speech therapy. Jim gets aggravated with her but she's trying to help with words and pictures to actually say the words which he thinks he's saying but isn't. By the time she left he caught on to what she was trying to do.  Then the OT, which did another mock up shower to see if he was doing the transfer better. I ordered some handles that aren't permanently installed so he has something to hold on to. 

The rest of the day he went thru boxes to see what was needed or not and we got rid of the stuff. He stayed really busy all afternoon which meant;

Wednesday he was really tired. He slept till about 9, we had breakfast and he went back to sleep for a couple more hours. The PT gal came about noon and wore him out again. He stayed up but went to bed earlier then normal. He's feeling so much better without radiation. He's on one steroid for now. I'll be cutting it in half over the weekend, see how he does. 

We had the social worker out to help with van transportation if I need it. It takes awhile to get signed up and in the system. I may need it during the winter months. I hate driving in snow/ice and we'll have plenty in this area. 

The subtle things I've noticed this week with Jim. He's drooling a bit more when eating. I'll be watching for choking or swallowing issues. He's always been a bit OCD, but it's pronounced now. Things bother him more if not in the right place or it's cluttered and not something that's suppose to be on a table for instance. When he wants something he wants it now. Since he can't talk to let me know what he wants it's more of a grunt or loud mumbling. I'm on a couple facebook groups with Glioblastoma caregivers and it seems to go with the tumor. He wants to get up and go like normal which isn't going to happen, he has a high risk of falling. He's also asking more about things I have just said. Short term memory is also part of the cancer. We both get to sleep in the next couple days. I'll keep you posted on our cancer journey. 

Saturday, July 17, 2021

Tests - Last Chemo and Radiation - PT, OT, Speech - House Sold - Household GoodsI Arrived

 Shiloh, IL  (Hi 83  Lo 67)

This is a journal of sorts following the diagnosis of Glioblastoma Stage 4. I tell it like it is with nothing holding back. 

I got back Sunday from the wedding and noticed Jim was speaking a little better after restarting steroids. I know the radiation doctor doesn't want him on them very long and on Monday that's exactly what he said. The radiation was over on Wednesday and he'll wean him back off steroids in a week or so. There's a big difference but still words do not come easily. He didn't ring the bell for completion of the radiation but he did get his "helmet" and a certificate from the gals that helped with setting Jim up for treatment. 

Monday was a day I had figured we better get the blood work done and the xray. Two different doctors ordering the same labs. The primary doctor didn't get the order in, took over a week, so I couldn't get it done. The chemo doctor is in St. Louis and I changed it to do phone call instead of going to the office. I'm so glad to do that these days. They have two buildings in the cancer complex. They both have labs and each doctor will ask for labs in either of the two.  I have no idea why, but it's a pain, because one doctor is in one area and the other doctors use the second lab in another building. I talked them into one lab and got it all done on Tuesday. 

Our visiting nurse came and noticed a couple of things. One is very low oxygen level. He also has conjunctivitis in the right eye. It's been bothering him for a couple days. The OT gal also noticed the low oxygen and both gals called the doctor. The doctor never call either one of them. I called and put in a request for something for the eye. She called back about 7:30 and did order drops. I picked them up and got the drops started, the eye is looking better. 

Jim is having trouble with constipation which we've learned that's from chemo so another problem we're working on for him. Magnesium citrate  hopefully will do the trick. This will probably be ongoing. He's also having a lot of trouble seeing, so a check for that will be Monday. 

I found out the primary doctor we have is only in the office 3 days a week and only answers calls when she has time after normal office hours. I'm hoping to change doctors on Monday. I have another doctor for myself,  so hopefully I'll get Jim with that one.  I did get a call that the MRI is August 10 with reading of it on August 11. We'll have to go to St Louis for that appointment. 

The rest of the week was OT, PT and Speech. It was great not getting up and going for radiation after Wednesday this week. I'm learning as much as Jim on how to do showers, and different exercises to strengthen the right side of the body. 

I got a call on Wednesday that the house in Florida sold. At least someone is putting money down on it and is doing an inspection and checking with the office to see if they will be allowed in the community. That was another big worry to have two payments to make on rent. I'll be happier to get the money in the bank. 

The biggest news!  We have our household stuff. This is a story that you'll love. If you ever move be careful who you get to move you. This has been so upsetting and stressful. I went thru the internet and thought I had checked everything possible with reviews. I found what I thought would be a decent mover. I know moving isn't like it used to be in the military it's very expensive, anywhere from $6,000 to 22,000. I found a company that took a discount off for military moves. The one thing I read was a guy was disgusted about movers and he was former military so he started his own company. The company name is Moving and Storage Squad. The down payment went to  GLOBAL HOME LOGISTICS.  I wondered why the different name, but didn't think much about it because that usually happens when you deal with one person and the company that actually picks up and delivers is another company.  That's not the last of it. I paid money to Global, then to Moving and Storage.  I dealt with Moving and Storage with a gal that set me up and I asked for one week delivery. She said that wouldn't be a problem. She asked what I had and we went back and forth several times. She always wanted to know what BIG ITEMS I was moving. I told her the bed, 2 chairs etc for things that didn't fit in boxes. I also said  we had a one bedroom double wide mobile home. WARNING:  At this point be sure someone comes out to assess what you're moving.  I wish I would have had someone come out. I didn't have time or energy to pack myself, so I left it with the movers. Another company came out named Cosmos Transport. They had  Moving and Storage pass the whole move to them and the guy in charge of packing and picking up charged another $5400 to pack us up saying there was a lot more then expected. If I had time I wouldn't have let him have it. That made the total move almost $7,000. Big difference then what was first quoted. It took a full month and two days to get our "stuff". Two legs are torn off the big TV stand and 4 plastic boxes are broken, but so far that's all the damage. I'm glad to have everything now to help Jim better. It's putting it all away that will be challenging. 

The move in:

The big TV was the first thing in the apartment. 

We were really worried this wouldn't make it. 

Monday, July 12, 2021

Kyle and Holly's Wedding

 Normal, IL (Hi 77  Lo 66)

I went with another couple women, Sherri and Connie,  to the wedding in Normal. Jim was advised highly not to travel and with an all day rain and the way he was feeling we went along with that idea of leaving him with my sister, Doris. I have to thank her publicly for staying the weekend and helping out. Doris came over on Friday afternoon to see what was needed to be done and how to handle all the pills and routine. I left Saturday morning about 9:30.

On the way to Normal we stopped for lunch then went antique shopping there's several shops along the way on I-55. I love those types of shops but didn't buy anything, no room in the apartment. We headed on to Normal to the Hyatt hotel and got dressed for picture taking. 

We did family pictures which is totally different then what I've heard of before. They do a "first look" with the groom and the bride before the family pictures. They meet and get reactions of each other in the gown and tux. They did a trick on Kyle. His brother, Kendall,  dressed in a wedding gown and tapped Kyle on the shoulder, when he turned around, SURPRISE!,   It was really great on video. Here's a few of the pictures before the wedding. There's a video of the wedding also included. 

                                                             Holly and Kyle

                                            Grandkids,  Jack, Kendall, and Kyle
                                            Grandma's of Kyle, Sherri and Dee with Holly and Kyle
                                            Our Family: Rick, Jack, Kendall, Holly, Kyle, Angie, Frank, Dee
                                            Frank, Holly, Kyle and Angie  
                                                        Jack, (grandson),  Frank, Rick (our sons)
                                                Dee and Jack
                                                            Sherri, Kendall and Dee
                                                     I love a black and white photo, This is son Rick and his son Jack
                                               All the families gathering for the family photo. 
                                                        Holly and Kyle with cake
                                            Dancing was suppose to be outside but rain brought us inside. 
                                            Part of the wedding party showing the guys. 
                               Our family and the wedding party with the gals in the background.
                                        Cupcakes instead of a big cake. They were really good. 
                                            And we introduce you to Mr and Mrs Kyle Walter
The wedding was live on  Check it out here. 

We had a wonderful time and at 9:00 we headed back to the hotel. We stayed at the Hyatt and the room was so neat. I had four big windows which looked out toward the  Hyatt garage. 

I went back home with Frank and his family. It takes 2 1/2 hours to Normal from O'Fallon. It rained part of the time. I got home about noon and Doris went back to her home early afternoon. It was a perfect wedding.  Here's more photos.