Short Version: Brace has been stable this last week. The only difficulty is that he got a bad eye infection. He stopped puking on Wednesday and on Saturday we were able to go to the Lake Arrowhead home with Kjarstin and James. Today we started long chemo which lasts about 6-7 hours. If the past is any indication, he should be really sick on Saturday.
and the long version....
Thursday Jan 23rd: Ammon Harps packed up the Glee car and went and worked at the cabin today. Helping Martin set up cameras, doorbells, google home and build furniture.
Brace's eye hurt so much yesterday. The good news is that I was able to get a same day appointment for today. We went to Dr. Jacobs an opthamologist in Laguna Hills. He is thinking it is not an infection but that his eye is extraordinarily dry. He said the following things cause eye dryness, Lasix, radiation, chemotherapy, nose surgery and his eyes not closing completely. That is a lot of contributing factors adding to his dryness! At the doctor's recommendation, we ordered some special Muro 128 which only could be found on Amazon. It finally came today, Tuesday, Jan 28th and we are hoping it will help with his eye pain.
After we got home from the eye doctor my sister, Diane Perkins from Moreno Valley, came to hang with me. She started on some frames that need assembling for the cabin while I was driving back from the eye doctor and the pharmacy. Then we worked on emptying 2 dressers I wanted to take to the cabin this weekend. Then to top it off we went to Thai Smile and split Chicken and Cashews. Thank you to Staci for also offering to hang with me on Thursday. :)
Friday Jan 24th: Brace was too tired to go to Lake Arrowhead today, but he was stable all day and all throwing up has seemed to stop. If he doesn't puke, Brace and Karen are happy! I basically spent the whole day packing for the lake. Packing for someone that takes 15 medications, uses pumps, suction regulators and eats through a tube is complicated. We are not one of those couples where the wife packs for the husband, but he is really too tired to pull it off. No worries but it makes us laugh. In the past we always laughed at couples that didn't pack themselves and were mad at their spouse for forgetting things. Brace would never be mad, but it makes me laugh when I pack for him because we thought I never would. :)
Saturday, Jan 25th: James and Kjarstin came over before we went up the mountain to help Karen pack the heavy stuff, including the two dressers Diane and I emptied on Thursday. With Karen's bad back and Brace's weakness, we need a lot of help. :) . We headed up the mountain and this is the first time Brace has seen the flooring done and the kitchen done. WOW - he loved it!
Brace asked James to set up the adjustable bed so Brace could sleep on that. Brace was so grateful to have that working at the lake house. Then James helped Brace install the TV mount on the wall in the living room and installed the Roku speaker and cable in the living room. Kjarstin helped unpacked 3 sets of lamps for the two master bedrooms and the living room. We moved around the furniture in the living room a lot and it is looking great. Karen worked on getting everything unpacked and started unpacking all the boxes in the kitchen.
At night Brace and I watched the first episode of Picard. (Yes he loves Star Trek) It was beautifully done and it should be fun to have something that both of us like to watch. We don't really watch much TV or movies together.
Sunday Jan 26th
I told my sister Diane that we were going to try to attend church in Arrowhead if Brace was up for it. She told me to look for her friend Kelly, who used to live in Moreno Valley, at the Arrowhead ward. With that discussion we found out that church did not start at 11am as the website suggested but at 10:10am. Diane saved the day there.
Debbie & Alton Gunnoe were in that ward and Debbie reached out to Brace and they immediately remembered each other. Alton is a CHP and had to work today. Alton was one of Brace's groom men and he also rented a house with Brace, Laura and Jon Love. The church congregation was delightful in the ward and the chapel was to die for. That is saying something for two people (us) that don't even like oak.
Angie Koster, our real estate guru for Arrowhead, came over to visit us at the lake house. We purchased the lake house right before his diagnosis and while he was having nose bleeds. It was great to catch up with her.
Then Alton came over to visit for an hour. This is the first time I met him and he seems like a kind and gentle man. (even with his gun, ammo, taser and all the gear) He is retiring soon and moving to Bonner's Ferry Idaho. (that is where my mom was born)
Monday Jan 27th:
I got up early convinced that I needed to get the game room together and dusted off AND getting my exercise bike working. We spent the day getting all the boxes collapsed and put out by the trash. Brace sat down, folded and sorted through the 7 sets of queen size sheets. If we haven't told you yet we have a bunk room with three bunk beds and six queen size beds. It will be the family reunion house. We ended up driving out at 6:30pm and headed for home.
Brace is such a trooper. His favorite saying is, "Well it could be worse." After driving half way down the mountain, Brace starts hurling out the window. Typically when he throws up it goes on for 10-20 times within a 5-10 minute period with no breaks. After throwing up outside the truck window and me only being able to pull over after 5 minutes of a winding road, he says to me, "Well it could be worse". He refuses to be a victim. That is his motto.
Thank you to Megan and Craig Williams for getting some meds at Walmart before they closed.
Tuesday Jan 28th;
He slept pretty well last night and only woke up once for pain meds. At 9:20am Mike Silverberg came to pick him up for 10am chemo. With Mike driving it allows me to exercise, feed brace formula and meds, and I can make sure everything is packed for a long day of chemo. Today he gets three treatments and so he is there for about 7 hours. I'm giving him his third round of formula and meds now. Thank you to Steve Tanner for coming to pick him up. You've always been a dear friend. Anne Cox came and helped me fold clothes and the fun part we put together frames and prints for the lake house.
Right before we went to bed, a group of young men came from the church and brought us homemade chocolate chip cookies. I told them they could come up and say hello to Brace before we went to bed. Luckily I heard the door. :) Brace was on fire and told them crazy mission stories and how a mission was when he became a man.
Future: He has short chemo Wednesday and Thursday and then Friday they give him a shot to encourage his body to make white blood cells. It worked last time but seemed to take a week. You might remember his numbers went up the last day in the hospital. Saturday he should crash so we are trying to enjoy the days until then.....
and the long version....
Thursday Jan 23rd: Ammon Harps packed up the Glee car and went and worked at the cabin today. Helping Martin set up cameras, doorbells, google home and build furniture.
Brace's eye hurt so much yesterday. The good news is that I was able to get a same day appointment for today. We went to Dr. Jacobs an opthamologist in Laguna Hills. He is thinking it is not an infection but that his eye is extraordinarily dry. He said the following things cause eye dryness, Lasix, radiation, chemotherapy, nose surgery and his eyes not closing completely. That is a lot of contributing factors adding to his dryness! At the doctor's recommendation, we ordered some special Muro 128 which only could be found on Amazon. It finally came today, Tuesday, Jan 28th and we are hoping it will help with his eye pain.
After we got home from the eye doctor my sister, Diane Perkins from Moreno Valley, came to hang with me. She started on some frames that need assembling for the cabin while I was driving back from the eye doctor and the pharmacy. Then we worked on emptying 2 dressers I wanted to take to the cabin this weekend. Then to top it off we went to Thai Smile and split Chicken and Cashews. Thank you to Staci for also offering to hang with me on Thursday. :)
Friday Jan 24th: Brace was too tired to go to Lake Arrowhead today, but he was stable all day and all throwing up has seemed to stop. If he doesn't puke, Brace and Karen are happy! I basically spent the whole day packing for the lake. Packing for someone that takes 15 medications, uses pumps, suction regulators and eats through a tube is complicated. We are not one of those couples where the wife packs for the husband, but he is really too tired to pull it off. No worries but it makes us laugh. In the past we always laughed at couples that didn't pack themselves and were mad at their spouse for forgetting things. Brace would never be mad, but it makes me laugh when I pack for him because we thought I never would. :)
Saturday, Jan 25th: James and Kjarstin came over before we went up the mountain to help Karen pack the heavy stuff, including the two dressers Diane and I emptied on Thursday. With Karen's bad back and Brace's weakness, we need a lot of help. :) . We headed up the mountain and this is the first time Brace has seen the flooring done and the kitchen done. WOW - he loved it!
Brace asked James to set up the adjustable bed so Brace could sleep on that. Brace was so grateful to have that working at the lake house. Then James helped Brace install the TV mount on the wall in the living room and installed the Roku speaker and cable in the living room. Kjarstin helped unpacked 3 sets of lamps for the two master bedrooms and the living room. We moved around the furniture in the living room a lot and it is looking great. Karen worked on getting everything unpacked and started unpacking all the boxes in the kitchen.
At night Brace and I watched the first episode of Picard. (Yes he loves Star Trek) It was beautifully done and it should be fun to have something that both of us like to watch. We don't really watch much TV or movies together.
Sunday Jan 26th
I told my sister Diane that we were going to try to attend church in Arrowhead if Brace was up for it. She told me to look for her friend Kelly, who used to live in Moreno Valley, at the Arrowhead ward. With that discussion we found out that church did not start at 11am as the website suggested but at 10:10am. Diane saved the day there.
Debbie & Alton Gunnoe were in that ward and Debbie reached out to Brace and they immediately remembered each other. Alton is a CHP and had to work today. Alton was one of Brace's groom men and he also rented a house with Brace, Laura and Jon Love. The church congregation was delightful in the ward and the chapel was to die for. That is saying something for two people (us) that don't even like oak.
Angie Koster, our real estate guru for Arrowhead, came over to visit us at the lake house. We purchased the lake house right before his diagnosis and while he was having nose bleeds. It was great to catch up with her.
Then Alton came over to visit for an hour. This is the first time I met him and he seems like a kind and gentle man. (even with his gun, ammo, taser and all the gear) He is retiring soon and moving to Bonner's Ferry Idaho. (that is where my mom was born)
Monday Jan 27th:
I got up early convinced that I needed to get the game room together and dusted off AND getting my exercise bike working. We spent the day getting all the boxes collapsed and put out by the trash. Brace sat down, folded and sorted through the 7 sets of queen size sheets. If we haven't told you yet we have a bunk room with three bunk beds and six queen size beds. It will be the family reunion house. We ended up driving out at 6:30pm and headed for home.
Brace is such a trooper. His favorite saying is, "Well it could be worse." After driving half way down the mountain, Brace starts hurling out the window. Typically when he throws up it goes on for 10-20 times within a 5-10 minute period with no breaks. After throwing up outside the truck window and me only being able to pull over after 5 minutes of a winding road, he says to me, "Well it could be worse". He refuses to be a victim. That is his motto.
Thank you to Megan and Craig Williams for getting some meds at Walmart before they closed.
Tuesday Jan 28th;
He slept pretty well last night and only woke up once for pain meds. At 9:20am Mike Silverberg came to pick him up for 10am chemo. With Mike driving it allows me to exercise, feed brace formula and meds, and I can make sure everything is packed for a long day of chemo. Today he gets three treatments and so he is there for about 7 hours. I'm giving him his third round of formula and meds now. Thank you to Steve Tanner for coming to pick him up. You've always been a dear friend. Anne Cox came and helped me fold clothes and the fun part we put together frames and prints for the lake house.
Right before we went to bed, a group of young men came from the church and brought us homemade chocolate chip cookies. I told them they could come up and say hello to Brace before we went to bed. Luckily I heard the door. :) Brace was on fire and told them crazy mission stories and how a mission was when he became a man.
Future: He has short chemo Wednesday and Thursday and then Friday they give him a shot to encourage his body to make white blood cells. It worked last time but seemed to take a week. You might remember his numbers went up the last day in the hospital. Saturday he should crash so we are trying to enjoy the days until then.....
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