Skip to main content

Finally some answers....

People have kept asking me for updates, but there wasn't anything to tell.  Well we finally have a little news and I am so excited to share it. Thanks for Linda and David Vitullo who got us in with Dr. Joseph Barrera, the Endocrinologist.  Actually so many of you sent the names of your doctors, but most all the doctors we called were booked out months or weren't taking new patients. 

Background: So months ago Dr. Carroll, our amazing Oncologist, ordered a lot of labs and the only the lab that came back funny in that batch was his FSH. It was crazy high - 400%.  This meant his body was telling the body to make more testosterone but it wasn't working.  Dr. Carroll said that was not his speciality and we should see an Endocrinologist.  I was anxious to get it checked out since we were told that his immunotherapy treatment would have a lot of life-long side effects AND most of his radiation was near his pituitary gland.  Remember that his cancer was called Neuroendocrine carcinoma of the paranasal near his pituitary gland, optic nerve, brain, and nose. 


We tried to get in with Dr. Barrera, Dr. #1, from the beginning, but his nurse was having no part of it.  She was very nice, but kept firm that he was not taking any new patients.  I was anxious to find out why Brace seemed to be getting more tired, couldn't gain weight, and had no endurance.  With absolutely no medical background I felt like it sounded most like a testosterone problem. 

We got an appointment with Dr. Nadeau, Dr. #1, within a week and Brace really liked him.  The doctor felt like his testerone looked OK and it was not below the acceptable range. He did a boat load of tests and the doctor felt like he was having a thyroid problem or adrenal insufficiency.  The second round of labs they gave Brace the cortisol test and ruled that out as the problem. Dr. Nadeau really felt like Brace had hypothyroidism, but we felt like that the thyroid medication he prescribed wasn't really doing anything. 

So while we were with doctor #1, Linda and David Vitullo were telling Dr. Barrera, doctor #2, "You have to meet with Brace."  She even said, "I will stop being your patient so you can see him."  WOW - that's a lot of love right there.  So after me sending doctor #2 all the tests and labs and then Linda and David bugging him, Dr. #2, agreed to see Brace.  

So last Monday August 24th we had our first meeting with Dr. Barrera.  The front office was so nice, but that made it clear that I wasn't going in.  I smiled and told them that I had test results on my phone and I was going.  They kept saying no, but they did let me in. :)

Well Dr. Barrera was young, smart, fit and very funny.  As you can imagine Brace and the doctor went together well.  He was concerned with FSH being so high and looked at the free testosterone and sure enough it was below the acceptable range.  I told the doctor that Brace's testosterone level might be in a normal range for most, but that this was a very macho man and I believed that being at the bottom was not a normal range for him.  He asked me joking if Brace slapped me around when he got angry....  Like I said, they were both irreverent.  LOL.  The great news is that they gave him a testosterone shot and he started to feel it almost instantly.  Unfortunately he took it pretty late in the day so he had trouble sleeping.  We are not really sure if those two things are connected, but it sure seemed to be.  Since Monday he has gone biking three times and even went to Whiting.  He still doesn't have any muscles, but he has his umpf back and he might be able to increase his endurance.  I am so happy for him.   Thank you for your prayers and keeping the faith. God is real and will help us find the answers - especially with friends like you. 
Requests:
1. Pray for our friend Serena who has surgery tomorrow at the Mayo Clinic.  Please pray that it is not cancer and that they can avoid the nerves that control her face. 
2. Pray for Carey Penrod - he still needs miracles.  He does impossible things every day.  We were blessed to finally talk to him last week.  He sounded just like Carey.  What an amazing journey.  We love all the Penrod family. 

P.S. I forgot to tell you he met with Dr. Luu the ENT Cancer Surgeon this Friday and he admitted to Brace that when he saw him at the first appointment he thought he would never see him again. He knew it was fatal. The non-believing doctor said, it is truly a miracle.




Comments

Post a Comment

Popular posts from this blog

Brace never complains

Brace is pretty stable. Friday was a bad day at radiation. The new mask was way too tight and he wasn't happy about it. We talked with Alice and the techs and hopefully they will have that resolved by Monday's appointment. On Friday Drew and Kathleen Himber came to visit us. (They live in Chicago these days) Brace felt pretty good today and he was able to eat a few bites of food. He seems to really likes drinking ice water right now and we hope that doesn't go away with chemo treatment starting on Tuesday. Brace... never complains never feels like a victim never asks why him Karen... feels positive in the morning feels overwhelmed at night What to Pray or Fast for? We are worried about chemo next week coupled with radiation. (Tuesday, Wednesday, Thursday) This will be round four and every time he does chemo he gets sicker than the last time. They will add a nuepogen shot on Friday. Thank you's... Bob Demmon for driving on ...
Post a Comment
Read more

Chemo Week Round 4

I'm sitting here in our adjustable bed (we are spoiled) with Brace listening to Jesus is Just Alright with Me while I finally update the blog.  That is a great song....  I also like The Spirit in the Sky, but Brace is not convinced it is as good as Just Alright.  He accidentally hit my song and we're listening to Spirit in the Sky. Short Version: Brace has chemo this week (3 days) and radiation ends tomorrow! Next week should be awful. Saturday Star Wars:  So Brace felt pretty stable Saturday.  When Corte Haggard took him to radiation last week he got him all jazzed about Star Wars.  So at around 3:30 we went to Foothill with James and Kjarstin to see Star Wars.  Brace was decked out with mask and gloves.  We enjoyed the movie but it wiped him out and so we headed home to try to go to bed early. FLOOD: James and Kjarstin had been working on some Glee projects in the music lab so they headed to Glee after the movie. (Tender me...
Post a Comment
Read more

MRI, no Brain Surgeon, Friday Radiation

Liver MRI : Brace had an uneventful MRI this morning. It takes a while for the write-up and CD. After talking with Dr. Carroll the other day I'm not that worried about it. He then ran to LA to work with a client today. Trust: One of my clients is an estate lawyer and was kind enough to meet with me this morning to setup our family trust. Everything should be set by next week. If you need a referral, she was amazing and gave me great advice. Dana and LouAnn Lake came to visit Brace this afternoon from Arizona. It was a treat to see them. I forgot to take a picture. Brain Surgeon : He was on call at the hospital and had two surgeries. We postponed out appointment to next Wednesday. Fast Radiation: We are coming home now from radiation. It was his fastest yet. He doesn't complain or freak out, which they said is uncommon. Until we did this I had no idea what radiation on your face really meant. We are thrilled with the doctors and the techs her...
Post a Comment
Read more