FAMILY

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

Tuesday, March 12, 2019

Good times & fun in the sun 😎

It's been a few weeks so I guess I better get busy and continue my goal of writing/blogging at least every month. Some days I certainly don't feel like it, but I do it anyway so that I can keep things straight and share the goodness of my life.

Our Maui vacation was wonderful and even though it rained a little we still had a great time. Bob and Michael played golf and Monica and I enjoyed an amazing day at the spa. The Grand Wailea has the biggest and most gorgeous spa I've ever seen! I've been there before but I forgot how beautiful it was. We spent most of the day there and were pampered and massaged and scrubbed and had our skin pampered with an amazing facial. 

We had some down time too which was good for me. I rested and read and wrote in my journal. We walked around and shopped and ate fantastic meals. We went to Mama's Fish House and had a wonderful time. We were there for several hours and enjoyed every minute. 

Luckily their son Austin had some time off as the 'head honcho' at The Andaz Resort so I got to see him too! I've known Monica since the early 80's and enjoy every minute with her and Michael and her kids. 

When I got back I was lucky enough to have lunch with my sister and Andi. I've probably mentioned this before, Andi and I have been friends since 6th grade! I am so happy to have her in my life and I love it when she and Sue come visit. We chatted and had a great meal in Danville. The time flies by when they visit and I am always sad when they leave. Oh, we snuck in some shopping too which is always fun!

Then things got a little crazy down in Scottsdale for Kristen's bachelorette party! Not really, I actually left before it got too wild😊 Kristen and I had some time alone before her 'crew' arrived and we made the most of it. The hotel knew it was her bachelorette weekend so they spoiled at the W Hotel with sushi, champagne and some amazing desert. The following day we had a massage which is always much needed.
That night after all her friends arrived we went to dinner and then back to the W for a few drinks. It was wonderful and I couldn't be happier for her! I am glad I flew home the next day because I'm too old for pool parties and late night extravaganza's. I did my best to keep up with them before it got too crazy and I had a fabulous time. I'm so thankful she included me for a portion of it. They went to spring training too and watched the Giants play some baseball. I think the best part of that was their matching tank tops! 



I probably mentioned a few months ago that the Roche/Genentech clinical trial I was in had been stopped. There were no visible / conclusive positive outcomes so they stopped the trial. I was sad at first but was happy to find out that I wasn't getting the drug anyway. I had been receiving the placebo all along these past several months. Last week I went back to UCSF to HOPEFULLY qualify for another clinical trial. This one is with Eli Lily and the focus is Tau, not the Amyloid plaques. I passed phase one testing but I have at PET scan, an MRI and two other appointments before I know if I quality. The PET is the most important for this trial. I can't have too little in my brain, and I can't have too much. I keep explaining it like Goldilocks and her porridge, it has to be 'just right'. I am praying that I can participate because without good and effective trials we will never find a cure.

My executive function continues to erode and my anxiety is high at times. I don't use my computer that much because I find it's easier for me to do things on my phone! Isn't that weird? Well, I think it's weird but I'm doing what works for me, and as my doctor said, I'm doing what makes me happy! And my phone makes me happy and makes my life easier than other devices.

My next trip is to Washington DC to attend our AIM Advocacy Forum and it will be my third time there. I'm very excited about it and very much looking forward to time with all my friends from around the country. It really is a fabulous forum and I love going to talk to all the Senators about our legislation and the URGENT need to find a cure.

It's time for dinner now and Rusty is trying to get my attention. Thanks for being there for me and for helping me through this journey of mine. I'm taking the good days with the bad and 'doing what makes me happy'! 

love and blessings 
xoxox

3 comments:

  1. Thanks for posting, Pam. Jane and I are following your progress as well as we can from 5,400 miles away, and praying for you frequently. Feel free to add a call to us to the things you "do on your phone" - any time (NB 8 hours later here than Pacific time!). Loads of love. Nick

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  2. I would love that! Let’s plan a call soon 💜 And thank you for the prayers. They are so important 🙏🏻

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