I fight for a cure for me & our amazing children❤️

Monday, May 29, 2017

Clinical trial update & the joy of nature!

These past few weeks have been incredibly busy so I was grateful for a day of rest, Memorial Day, a day of remembrance for those who lost their lives for our freedom. I was grateful that  I could attend my yoga class but the highlight was a walk around Lafayette Reservoir! It was a gorgeous day, not too hot and there was a nice breeze. It's a short walk, a little under 4 miles and it was just what I needed. I find that even though going to the gym is satisfying, there's nothing like being outside. I love feeling the wind in my hair, and the sun on my face. Bob and I decided that we should do it more often and add it to our list of things that 'make us happy'. I'm sure you've heard me mention that before. My doctor told me after I was diagnosed that the most important thing I needed to do in addition to staying active, and eating well was to do what makes me happy! I just love her advice and I try to remember it every single day.

Last week was stressful and overwhelming and busy as I mentioned. Monday started with an MRI at UCSF. I don't know about you but being strapped down with a cage over your face and head and put inside an incredibly small tube is not my idea of a good time! It's only the second time I've had one and thank goodness they gave me an Ativan or I would not have made it. I have claustrophobia so any small spaces are not good for me, and having a cage on my face makes it worse. But I closed my eyes and they turned on Christian music for me which really helped. I tried to sing along and pretend I was at home in bed relaxing. I also feel compelled to be part of the Roche/Genentech clinical trial and the MRI is a requirement. The good news is my MRI was fine! That bar has been cleared😁

Tuesday we drove to San Luis Obispo for a few days. I was scheduled to speak at an event called GOOD MORNING SLO. Thursday morning I got up at 6am (not my favorite) and attended the event with my husband and 300 other business folks. Bob's boss, the President of Cal Poly and his wife were also there to support me. I have also made some great friends down there and they were there too which was comforting. I spoke last and shared my story. I cried, several people in the audience cried too, but I am OK with that. My story is a sad story, but it's also a story of hope and faith.

My husband video taped the entire thing and posted in on Facebook almost immediately. The comments and support have been overwhelming, and the last time we checked there were over 3000 views! Hopefully that means 3000+ more people than I could have ever reached via a blog or an email, have heard me speak and share my symptoms. They heard me and saw me being honest and not hiding or having shame about my disease. That makes me happy! And I hope it helps others get the help that they might need.

We drove home on Thursday because Friday was another big day for me. It was the FINAL piece of testing needed to qualify for the clinical trial. This time it was a CT scan. It required another 6am wake up but I survived. This test required me to be injected with a radioactive drug, to then wait 50 minutes to have my brain absorb it and to then have the CT scan. I did well with this one. The tube is small and it's like a circle that you can see out of and they don't put anything over your face. Everyone at the clinic was extremely friendly and kind which also helped.

Now we play the waiting game to see if I qualify. If not, I will be OK. I have done everything I could have and believe that everything happens for a reason. If this isn't the trial, then there's another one that will be better. I am praying that I qualify, but I know it's out of my hands and will trust the outcome. 

I want to thank all of you for your thoughts and prayers. Not a day goes by that I don't get a nice note or comment, or an email or post. You all keep me going and I am blessed to have such good friends and family.

Have a great week and as my favorite TV host Ellen always says "be kind to one another"💜


  1. "My doctor told me after I was diagnosed that the most important thing I needed to do in addition to staying active, and eating well was to do what makes me happy! I just love her advice and I try to remember it every single day."

    Dear Pat, that is GREAT adivce for everyone! Stay active, eat well, live a life that makes you happy, and do so each and every day. If everyone lived life in this fashion, the world would surely be a better place. Mary Rae Fouts

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