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

Saturday, December 23, 2017

It's Christmas Time!

So here we are. Home from Maui and deep into the holiday season. For us, that means Christmas. We have the tree up and most of the presents wrapped and under the tree. The house is nicely decorated both inside and out. We are excited to see our grandsons next week, and Kristen and her boyfriend. We plan on celebrating on Christmas but if the kids can't come over until the 26th then we will wait. This holiday is all about them. All about making things seem as normal as we can. To have fun and focus on the good things. Our goal is to open gifts and spend the rest of the time playing and laughing and enjoying each other. Oh, and eating of course.

Hawaii was magical as always, and we had a marvelous time. We traveled to Lanai and shared memories of our wedding at the Four Seasons with our friends. We went to the beach, we walked, we swam and we enjoyed our time away. This year it was all about spending quality time with people we love.
We celebrated our Anniversary at the Montage and hosted an unbelievable dinner! Bob had a chance to play golf at The Plantation Course at Kapalua with some of his friends the following day and they had a blast. I had some time to walk on the cliffs with my friends overlooking the ocean near the Ritz Carlton where we stayed on our anniversary. What a treat! Our condo is nice, but it's like home to us and being in a hotel is always enjoyable.

I needed to nap during the trip. I needed to rest, to be alone and to decompress. I love my friends and my family but I am learning about my limitations and what I need to do to keep my energy up. We were also dealing with some tragic family issues and the stress probably knocked me out as well. I did the best I could and I was surrounded by people I love, and who I know love me. What more could I ask for? They let me rest when I needed to rest and never questioned my decisions to end the evening early.

I did have a long recovery after we got back though. I think today was the first day I've felt well since we returned. I've been sleeping during the day, exhausted and actually pretty sad. One day I didn't leave the house at all. I've been crying at times but not uncontrollably. The pain is close to the surface. If I distract myself and keep busy, I'm ok. If I knit and watch TV, I'm good. But when I close my eyes and try to rest, my mind races and brings up the sadness we are dealing with.

Thankfully I have support and friends and family. I have my faith and know that God is in control, not me, and that he is looking out for all of us. I will continue to lean on the people who I know can help me, and trust that things will work out the way they were meant to. I am not in control at all. I can only control myself and I'm doing that by surrounding myself with goodness and family and people I love.

Christmas will be different this year, but it will be wonderful. We will make sure that it is. Our focus will be on Ryan and Michael and loving them and ensuring that we all have a wonderful time. ‘Family First’ is one of my motto's. We are having a turducken so I know the meal will be amazing too. I haven't let Alzheimer's define me, get me down or ruin my spirit. I'm a fighter. I can handle this current situation too. I know I can and I will!

Happy Holidays to all of you. May your family time be filled with blessings, love and laughter.  And I hope Santa brings you what you asked for🎅🎄

Friday, December 8, 2017


We are in paradise again! Back on Maui at our condo where we come almost every year. It’s a beautiful warm day. No clouds in the sky and a soft breeze keeping us cool. For those of you who have been following my blogs for a while, you might remember that last year when we were here we got some bad news regarding the Roche/Genentech clinical trial. It definitely put a damper on our time here but we did rebound and have a wonderful time.

This year we are celebrating our 5th wedding anniversary and will be hosting dinner with some of our friends and family! We are very excited to see everyone. Most folks will be here tomorrow with a few more coming in a little later. We’ve already confirmed the venue and the menu and are so thankful that we will have them with us to share this special celebration. We aren’t sure how many more anniversaries we will have so we are making the most out of every year! And as most of you know, I actually try to make the most of every day!

We are also dealing with an extremely difficult and tragic family situation and so being here during this time has been therapeutic. Maui is my ‘happy place’ and I've been coming here for many years, thanks to my dad who sold me his unit about 18 years ago. The ocean soothes me. When I struggle at night with sleeping, the sound of the waves is my first choice to help me relax. Everyone who is here is in a good mood and the food is so yummy. I think I could eat papaya every day💜

We haven’t done much but we are enjoying every minute. The food is spectacular and the weather is perfect. Right now we are outside on the sea wall relaxing and listening to the crashing waves. We were surprised to see some of Bob’s high school friends here from the Antioch Brentwood area. They are delightful and we had a wonderful meal with them last night at their condo. It really is a small world!

A few days before we left I had my 7th infusion and a series of cognitive tests. It was long and grueling. They had a hard time finding my vein again and decided to use one on my right wrist. I am grateful for all of the staff at UCSF. I must say they really do everything they can to make these visits pleasant. I’m also wondering if the infusions are helping me. There are days I feel like my memory is intact! But I’m also struggling with my balance and have bumps and scrapes and bruises all over my legs. I’m looking a little bit like an old lady😑

One day at a time! I continue to feel supported and blessed by all my friends and family. I love the visits from my high school girlfriends. Not a week goes by that I don’t have a lunch date or an event with someone who cares for me. All of you are lifting me up!

At the Walnut Creek Walk event last week I was shocked to see our team, Buni’s Buddies, at the top!! But I don’t know why I was shocked. All of you have been so generous and are helping us raise money to find a cure.  Thank you so very much! Without funding there will be no cure. And my new favorite person is Bill Gates! Holy Cow, his generous donation of $100 million should excite and encourage all of us.

We have another full week in paradise. I plan on spending every minute enjoying the ocean breeze and the time with our friends and family. Giving God the glory for this special place🙏

Mahalo to all for your support and prayers. Keep them coming!