Brace is the Man

Short Version: So the last time you heard from me was March 14th and Brace decided he was ready to shed his last 12mg pain patch.  We did it with the help of the doctor this time.  We were bracing ourselves for another crash and throwing up. We are big believers in God and think God can help us along the way.  On Saturday night I told God, "Look I haven't really asked for anything through this whole adventure, (I figured you guys were asking for us), but will you please please just let him skip this whole throwing up withdrawal thing?"  He is now officially off ALL pain meds and lived to tell about it.  Prayers answered.... Thank you! Make sure you ready Saturday 21st if you don't like the long saga.  Day by Day:  So I have been beside myself this month trying to save Glee Music Academy, finish the Lake rental, get Brace to eat and write this blog.  (that would be a fail on the blog)   Kjarstin called me early Saturday morning and s...

SHORT VERSION: It has been an eventful week and we finally feel like he is progressing. Here's the one sentence summary: Immunotherapy this week, gained a 2-4 pounds, progress in eating (one meal a day by mouth), and his hair is starting to grow. and the long version... On Friday , the last day of the show Anytime Garage Doors from Las Vegas responded to Brace's text from Thursday.  (Joey, Michael and Michael)  They were going skiing the last day of the IDA show and realized they would miss Brace so they texted him to see if they could meet him in the hotel lobby.   After meeting with Anytime we went over to the show for the morning and then around 1pm headed for the airport to head back home. Saturday and Sunday he basically slept all day and night, but he seemed pretty stable.  The garage door show last week was a lot for him.   I went to church on Sunday and Gabi Stemrich came and joined me and that was fun.  When I got home Dylan Harps...

Well we are here at the beautiful AC Marriott Hotel across from the Salt Palace Convention Center. Here are the blessings of the trip The Marantec team is so nice to him and they all know his journey.  The booth at the IDA show is beautiful and welcoming.  I got to meet all the German and US part of the team.  They had a beautiful white couch that Brace could sit on during the show.  He wears his gloves so shaking hands isn't a problem.  He seems to walk for a much longer time than he can stand.  They were fine with him ducking out early for a nap before dinner.  He has been able to eat a fabulous dinner every night. Mostly tube feeding for the rest of the meals. We attempt lunch but it has been a fail most days.  No problem - we come to the show with his formula.  He slept 13 hours last night.  A little late to the show and they were OK with that.  I got to come! :) I just wrote a quick update because I knew a lo...

Short Version:  Brace looks good, but feels very weak.  Recovery is a lot slower than we both had hoped. Monday : P-Day is always fun because we get to chat or video chat with Penelope with what seems like all day.  9:45am Brace went to physical therapy.  He almost didn't go this morning. We sent lots of messages to both the oncologist and the palliative doctor.  We either have a pain pill problem or there is something wrong with his stomach.  Thank you to the many of you that gave us referrals for GI doctors.  We have two appointments next week. I love his therapist but she is a talker.  I think Brace is like most men and he can only take so much women talk.  Who knows why he married a talker like me? (please don't comment on that)  He calls the gym, an old man's gym and says the therapist is lonely.  He continues to feel nauseous and awful. Lake Arrowhead is getting close.  Foosball table was installed today for the game ...

Monday: Infusion center called and said that Tecentriq (Immunotherapy) was cancelled since it wasn't approved. For four hours I talked to Blue Cross and the Infusion Center. It was approved in January after two treatments already happened so infusion couldn't understand that only two happened since then. I finally was able to explain it to everyone and we got back on the calendar for Tuesday. Tuesday: 8:30AM Dental Oncologist . Dr. Lowe told us that if he brushed his tongue three times a day for 30 times he would get his taste buds back in 2-3 weeks. Great news is by Thursday he could taste things. 10am Immunotherapy for 1.5 hours at the infusion center. We have one more treatment approved in 3 weeks. The next four are in the approval process now. Dr. Carroll wants him to do it for a year every three weeks but it is so expensive that they approve 4 at a time. 1:15PM Met with Palliative Doctor . I received forgiveness for taking him off all pa...

Feb 14th, Saturday We got a text from Dr Carroll today and he approved a blood draw for tomorrow to check his levels and get hydration. We are almost home. Brace screwed a few power failure lights on today. To give me a sense or order in my life I decided to clear off the granite and take a picture. We talked to the tree trimmer today and the blinds for the small windows were installed. (they look beautiful) Tomorrow the painters are coming to paint the mantle and bunk room (6 queen size be ds). The other master bedrooms are done. You have to read the last line on the T-shirt picture that the young Heather Savage sent. Happy V day. We are going to try to see She Loves Me the musical tomorrow at Sergestrom. Penelope’s favorite musical. Sad but true Penelope Lake, we will miss you. James and Kjarstin and the Winkler’s are going. Assuming we get some blood or feel great off the mountain. So when we got home Friday night,  I continued to wonder why Brace was feeling so bad and we we...

So on Wednesday we drove up the mountain. I took Brace off all his meds so he could drive. He was very happy to not be a passenger. We arrived and he didn't really feel so good. He barely slept at night. I think the nausea meds might create insomnia. It didn't matter when he was on pain meds. :) The next night I took him off all the nausea meds and that seemed to help. He hoped to be able to work here at the lake a little, but he has been very very weak. I texted Dr. C arroll and he said the altitude might mess with his anemia. We are going down the mountain on Friday to test his blood levels to see if he needs some more blood. Thank you to Bob Demmon. Thank you to Michelle for offering to do a UPS run. Thank you to Bev for getting our meds at Walmart. Last Monday, we met with three doctors which included Dr. Chou the radiologist and the Oncology Dietician. Everyone seems to think it will take Brace a long time to eat normally without salivary glands. They th...