Good times!

It seems like it's been a long time since I've posted an update.  But when I look at the calendar I realize that it's only been three weeks.  For me, three weeks is a long time and a lot can happen. So here I am again 😁

Three things stand out that I want to share:

#1 -- Bob and I were in San Luis Obispo for a few days. It's a lovely little college town with a wonderful community. The downtown is lined with small, locally owned shops and restaurants.  I was able to buy some yarn there and met a wonderful woman who I hope to see the next time I'm in town.  We also had dinner with some of folks Bob's been working with. I only knew two people there and everyone else was pretty close so I chose to hang out with their kids and play cards with them. But during dinner I was speaking with one of the women and she was very interested in my story, and my journey with Alzheimer's.  As most of you know I am not shy about my illness and I feel that the more I share my story the more I can educate on what Alzheimer's looks like.  Her questions were very thought provoking and came from a caring heart. I could tell that, even though I had just met her a few hours earlier. We cried together, we laughed together and I now feel like I have a good reason to visit again, very soon.

My take away was the importance of authenticity! And that every moment counts. She now knows what my symptoms were, and what I was struggling with. She also learned some statistics about how hard this disease hits women.  I will remember that conversation and try to ensure that every time I speak to someone about Alzheimer's, they too can walk away with new information and knowledge. At Intel we always said, knowledge is power.

#2--A few days later I had the pleasure, and I do mean PLEASURE of spending a few days with two of my best girlfriends.  We rented a house in Sedona and thoroughly enjoyed every minute.  The only little hiccup -- ok -- not really a little hiccup, was that my flight was delayed out of San Luis Obispo for six hours!! Yes, six long hours.  The weather was so bad that flights couldn't, or wouldn't come in to the little airport.  No bar, no restaurant but they did have a vending machine. I survived and did my best to keep busy. I knitted, I read, I chatted with everyone around me. And then finally I arrived in Phoenix. I don't even remember what time it was, but we were finally together and from that moment on every minute together was wonderful.

I had never been there and the red rock and the town and the people and the shops were all spectacular.  We went to a spa one day and didn't leave until dark! We had wine and lunch and when we finally got to our car we found out it was snowing.  That was a little scary but we made it home safely.  The next morning the ground was covered in snow and the tops of the red rock mountains were just beautiful. I can't wait to go back when it's a little warmer so we can do more exploring and hiking.

But what I loved most was just talking to my girlfriends and being around people I love, and that I know love me.  That's what life is really about and now I have the time and the permission to do what makes me happy.  So hanging out with smart, beautiful, generous, and loving friends, that I don't see often enough is at the top of my list.  Thank you Karen & Monica for doing all the planning and organizing! What a wonderful few days we had.  I can't wait for our next one 💜


#3--Yesterday Bob and I, and Danielle and Kristen attended the Part The Cloud event in Menlo Park. It's a wonderful organization that was founded in 2012 by Mikey Hoag. The goal is to accelerate progress in Alzheimer's research by only funding the most promising early phase studies. Every single penny from the event goes to research! The Alzheimer's Association asked me to be the Early Stage speaker. Each year they have someone with Alzheimer's share their story.  It was a beautiful event. I was truly overwhelmed with the love and support from all the women and the organization. Maria Shriver was there and we talked for quite some time. She took down my information (actually her assistant took down my information) and I hope to hear from her! I would love to spend more time with her and be a guest on one of her programs.  After my short 8 minute talk they gave me a standing ovation! I was so shocked I didn't know what to do. I finally went back up to the microphone and just said thank you, and God bless you.

During my speech it was hard to keep it together and I cried a little but I think most of the audience did too. There were over 300 people there and 99% were women.  I am brutally honest when I talk about my disease and I don't plan on ever changing that. Knowing how hard it is, but also how strong I feel spiritually is really important for me to share.  I am so glad my kids were there! I think they got a lot of love and support too. And they enjoyed the celebrities and the ladies they met.

We also met Kim Campbell, Glen Campbell's wife.  She was so sweet and asked me to give her my blog information. She said she would help me however she could. Sarah Rafferty was there (Donna from the TV show Suits) and Bob spent WAY too much time with her! I'm kidding of course but she is drop dead gorgeous and they took some great pictures together. I'm so glad they had time to talk. His year is made for sure😏

So wow -- I guess a lot can happen in three weeks! Who knew that not working would allow for so many adventures!  There are plenty of days where I am home relaxing and hanging out with my friends, having lunch and walking and just 'chillin'. But I am making the most of every minute and February will probably be another busy month. I'm living every day to the fullest and doing my best to make a difference in this world, and most importantly, to help find a cure for this ridiculous disease.

With blessings and love -- until next time 💕

Clinical trial delayed again!

Well maybe I'm just not supposed to be in this Roche/Genentech clinical trial! Is God trying to tell me something?  My blood work came back and my thyroid is still out of range. UGH!!  The clock starts over and now I won't 'potentially' qualify until late April, which puts the start date of infusions to May.

Hmmm... I guess I'm ok with that. I have given up control of this and am doing my best to just sit tight and see what happens. Since I have to start over on a lower dose, perhaps I can start on Namenda tomorrow too!  My local neurologist recommended it at my visit earlier this month but at that point I didn't want to push out the start date of the trial any longer than was needed. Now I'm starting to realize that one month difference is no big deal in the long run.

I should know more soon! If I can start on Namenda, I hope there are no side effects. I'm already constantly fighting headaches and am pretty low energy and sleepy.  I have a hard time falling asleep no matter how late I stay up. Meditation and music have helped me but it still takes at least an hour for me to fade into a decent sleep.  I'm active during the day and am in good spirits most of the time. But some days I just want to sit and read and sleep and knit if I can.  It's all part of my new 'normal' so I try not to judge myself.

So we shall see what's next! Taking things one day at a time is helpful. I'm looking forward to spending the weekend in Sedona and having some quality time with my girlfriends.  I'm doing my best to cherish every moment and be at peace in my new journey.

Love and peace and blessings to you all💜

Happy New Year - bring it on 2017!

It's raining again....it's been raining for almost two weeks and there's flooding and roads closed and on top of all that, our famous 1000 year old sequoia fell over this weekend! I was extremely sorry to see that, but you don't mess around with mother nature.  With the rain comes slippery roads and so I have been staying close to home.  Utilizing the dry spells to get outside and make sure we have enough groceries for dinner.

Although the skys are gray my spirits are high!  We have already had a great year and I am very excited and hopeful for what 2017 will bring.  As I mentioned in an earlier blog we had a great Christmas and really enjoyed time with our family.  I started knitting another blanket for Michael (our 6 yr old grandson) and have made great progress.  When it's wet outside I like to give myself permission to sit and knit and enjoy the day.  I love being warm and to have my kitties next to me with the fire going.....It's the little things in life....isn't it?

We got an Amazon Echo - Alexa this year and I absolutely love her! I have mine in our bedroom and when I wake up I ask her to turn on Christian music. Very softly and sweetly I wake up to uplifting and inspiring songs that help me start my day with an attitude of gratitude.  Having Alzheimer's does not define me, it does not bring me down. I have a new purpose in life! I have been given an opportunity to help others and raise awareness and hopefully to help find a cure. What a gift💜💜

Not everyone has a purpose.  Or perhaps you haven't figured out what your purpose or passion is yet. I believe in order to reach your potential you need to find your purpose and then passionately work to acheive your goals. Doing the most you can to help others and give back to your family and friends and community. And as my neurologist told me last year after my diagnosis, 'do what makes you happy'. If you are happy then you can work harder to acheive your goals.

Last week I was HOME ALONE for an entire week.  Since my diagnosis I had not been alone for more than a few days.  At first I was a little worried about how I was going to spend my time, and a little scared because it was wet and windy outside.  I went to bed at night with a flashlight in case we lost power. I was sick with a cold but still functioning pretty well. Every day I made a list of things to accomplish so that I could feel like I was doing something productive. Most days were spent knitting and sleeping and watching a little TV.  The highlight of my week was Thursday when I went to the local Alzheimer's office to do some peer to peer phone calls.  The people there are so uplifting and always bring a smile to my face. I walked in a little tired and sick and walked out two hours later with a smile on my face and joy in my heart😊  I am so thankful for them and all the support they have given us.

No matter where you are or what the weather is like, I hope you too can find joy in every day and do something that makes you happy.  I have a holiday planned in Sedona with two of my best girlfriends later this month, we booked our trip to Australia to see our soon to be born grandchild in July and in March we will attend baseball spring training in Scottsdale and watch our Giants with some dear friends!!

I think it's going to be a great year!  Maybe I will qualify for the clinical trial this year and maybe I won't. Either way I'm going to be writing about my disease, talking about it as often as I can and ensuring that everyone knows what Alzheimer's looks like!

God bless you all! HAPPY NEW YEAR!

Happy New Year!

Time with my family💜

It's been a long time since I've written anything.  We've been busy since we returned from Maui and have been spending most of our time with family and friends.  Which is really all I want to do these days. I love being surrounded by those who love me and who I love dearly.

The first event was a 35th birthday celebration of my oldest daughter Danielle.  It's very rare that we can coordinate a time that works for everyone, including her two young sons.  We had a wonderful evening and captured the moment in the attached picture. I'm so thankful that she lives nearby and we can spend time with her and the kids and everyone else!  What a blessing it is to be a Grandma (aka BUNI) and have my family near me💝

We were also able to attend our oldest grandson's holiday program at school. I loved that they focused on 'giving' and were involved in a fund raiser this year to help kids in other countries. Very good lesson for them to learn at an early age -- it's not about getting -- it's about giving! He got to play his violin for us and I was pretty impressed...although I may be biased😃

We then celebrated an early Christmas in Chico. What a wonderful time it was at Carol's house with Caitlin, and Odie too of course (her doggy). They are always so sweet and so supportive of everything I'm going through. I loved our time with them. Dinner was wonderful and they spoiled me with champagne and beautiful Christmas glasses to drink it in!  Lucky me.

One of our best friends then joined us at our house for a few days. Karen has been friends with Bob for years but the minute I met her I knew we were kindered spirits. We have so much in common and its wonderful to spend time with her. She loves my kitties as much as I do I think! She helped us prepare for a Christmas Open House and we stayed up way too late making cookies! I could not have done them without her.  The Open House was a success and saying goodbye the next day was hard.

Christmas Eve was a wonderful event at Danielle's partners aunt's house in Oakland. What a lovely family. She started the evening with a prayer and asked all of us to share a story or an accomplishment with the group. What a wonderful tradition! I hope we can continue to join that family every year.

Everyone stayed at our house this year and we all woke up together on Christmas morning. It was the first time that's happened in many years. Probably since Ryan & Michael were babies. It was wondeful to see their faces when they saw the gifts that Santa brought! And of course the celebration continued as we opened gifts for a few hours! There were 8 of us and each of us had several gifts so we took our time.

I am so grateful that we were all together, and that I was able to see some of our extended family and friends this year. Bob's son Jonny will also be here tomorrow so we get one more visit before the month ends.

I'm feeling peaceful and have come to accept the loss of the Roche/Genetech clinical trial. I know that something else will come my way next year.  I can't feel anything except completely loved and at peace.  Some of you who are reading this continue to 'fill me up' with your love and prayers and blessings. Thank you for that. I feel them and I need them.

I look forward to what 2017 will bring. I still have my moments of sadness and I had some issues with keeping track of what I wrapped or purchased this year. I had to unwrap a few things and then immediately put a label on them so I knew who it was for.  My Alzheimer's was evident at times, but there were other days where I felt pretty normal and on top of things.  As I've learned this too is normal for Early Stage.

I hope all of you had a wonderful holiday too and that the new year brings continued peace and joy. Thanks again for all your support and love💜

The long trip home....

We leave Maui tomorrow. I don't know why but I always feel a little sad when we pack up and close the door to our condo. These feelings have been going on for several years. I remember one time about 10 years ago I cried the entire way to the airport. What is it about this place that causes such strong feelings?

I have some ideas.....the ocean and the sound of the waves crashing bring me peace and comfort. My 'go to' app when I can't sleep is the sound of the ocean. It soothes me. There's also a wonderful lack of urgency over here. No rushing around, no stress about being late. We take each day as it comes. We walk, we swim, we go to the gym and exercise. Some days we read for hours out on the sea wall.

The other thing I love is the humidity and the warmth. This time of year it's not too hot and it is very comfortable! Days on end with shorts and tank tops and flip flops...... So nice!  The only time I ever wear shoes is when we walk or go to the gym. I love that....I love being casual and comfortable, just throwing a hat on my head when my hair is dirty! That's a vacation😄

This island also brings back great memories of our visits with my nephew Geoff. As I mentioned in my last blog he died recently and we are missing him very much. But on Maui I feel closer to him and know he is with us in spirit, watching over us and smiling because we are having such a great time.

Our trips to Lanai are also a highlight and it's always hard to leave that island. We were married there and truly feel pampered and at home at the Four Seasons. What a blessing it is to spend a few days of 'real' vacation there. No laundry....no cooking...no grocery shopping.  Just gorgeous blue ocean and amazing meals. They really did it right with the renovation. I'm feeling spoiled and full of their island spirit for sure🌴

Today we are meeting with some of Geoff's friends and tomorrow we fly home. Will I cry again this year as we drive along the ocean? Maybe...probably....it's been an emotional roller coaster since my diagnosis in July and tears come easily. So if I want to cry I will! But some of those tears will be happy tears of gratitude that we are blessed to have this vacation every single year. And excited tears because I get to see my kids and grandkids and friends and extended family over the holidays. I think all of that deserves some genuine emotion!!

I hope each and every one of you can find your 'happy place' today. Even if you are sitting at your desk or busy at work. Close your eyes and relax and take a minute to breathe and visualize your favorite vacation memories.....Mahalo and Blessings to you all for your continued support and encouragement 🌺💕🏄

Feeling the pain😟😟

We are on Maui on our annual two week trek to our condo. I look forward to this time every year. Last year I was still at work and agreed to join my staff meeting. With great pleasure I shared the view from our lanai with my boss & all my colleagues. I know ... not very nice since it was freezing in Oregon. Sometimes I'm not that nice😄

This year I came here with a heavy heart....my nephew Geoff lived here for many years and we always spent time with him on Maui. This year that would not be the case. He died on Nov 3rd on Maui. An unexpected death... and way before his time. He was only 48 years old. We are missing him and hope to see some of friends while we are here. They are all in deep mourning after losing a friend and I hope that spending time with them will help me heal my heart. What is that saying...the good ones die young.

Another unfortunate and painful event occurred just three days ago. I was notified by UCSF that I was not eligible for their clinical trial. Even though I passed all of their cognitive testing (failed the testing would be more accurate). My blood work came back and my thyroid stimulating hormone (TSH) was out of range for their trial. To say I was devastated would be an understatement. To be eliminated for something that to me is so insignificant was, and still is, difficult to deal with.  My doctor knew I was out of range and kept me on the same dosage because she thought that was best for me.

I cried, I got mad, sad and experienced a thousand other emotions....I shut down.... I'm not going to lie. It was rough. I sent a note to my family and close friends and told them the horrible news. And also asked them to let me sit with it before they reached out to me. I needed to grieve and as my daughters partner Lisa suggested 'feel my feelings'.  Boy did I feel them -- but that was 3 days ago....

Today I understand and of course always knew/know that everything happens for a reason. And that even though I have been focusing on this trial since my diagnosis in July that maybe something better will come along. Or maybe in March when I've been on a lower dose of my meds that I will qualify again. Or maybe another better trial will be available to me. I don't know. It truly is out of my hands and I am giving this to God and praying for me to find a new purpose for the next 3 months.

I'm speaking at an event in February. 'Part The Cloud' is a non profit & supports Alzheimer's research and asked me to speak about my journey. Maria Shriver and a key researcher will be speaking as well. All the money raised will be for Alzheimer's research. Maybe that's my new calling.....sharing my story and talking about overcoming obstacles. I can do that! And would be thrilled with the opportunity to help others....no matter what their challenges are.

As I've said before .... I have hope and faith and even with a heavy heart and the sadness of losing my nephew and being removed from the clinical trial, I will continue to fight for a cure -- dammit!!

Thanks as always for your love and support❤️

Clinical trial qualifications

You would think if you want to be part of a clinical trial you could just sign up and get started. That couldn't be further from the truth! All of the trials have specific criteria that need to be met.  The trial I am hoping to participate in is sponsored by Roche & Genentech. They are looking for candidates with 'mild' Alzheimer's disease(AD).

Day one was a preliminary test -- if I didn't pass this (meaning if I got too many answers right) I could not move forward in the trial. They only want people who's AD isn't too mild.....you might be asking yourself "what does that mean?". What it means is if your memory is ok and you can remember most things but not all, you aren't a candidate for the trial. I had a friend from my support group who wasn't 'sick' enough and did not qualify. Mind you, this guy can't drive due to his dementia, but I guess his short term memory wasn't severe enough for this study.

I, on the other hand, could not remember most of the words they asked me to remember. I also struggled with subtracting numbers by 3's without using pen and paper. The good news is I did do poorly enough on day one to proceed to day two of testing.

Day two was pretty rough. We had to get up at 6am to get to UCSF by 9am. Bob was with me the entire day and met with some of the doctors on his own. My time was spent going through many many tests. Memory tests, more math equations, trying to remember words they had shown me on flash cards. Drawing pictures, describing common day items such as a pencil, a bed, salad tongs, etc.....Then there was the blood work and a physical exam with an MD. I honestly don't remember what else happened. We did get a 20 minute break for lunch and finally around 3:30pm we were finished.

I will say that although it was grueling and exhausting, the staff is remarkable. They are all extremely nice and kind and really likable. All very smart as you can imagine, and that's what made it tolerable. That and  knowing that if I do get selected for the trial I will be doing something to help others. And to help Genentech and other companies understand what stops the Amyloid plaques and what doesn't.

My next visit will be for an MRI and after that I will get a CT scan. If those go well I will be 'approved' and in their Phase 3 clinical trial for crenezumab. It's a two year trial and I will be getting an infusion monthly. I really hope this happens. Being part of something that will potentially slow down the progression of Alzheimer's would be so amazing!

But for now I am focusing on the beach and the waves and the sounds of Maui.  We leave tomorrow and the timing is perfect. Bob and I both need a break from the doctors and the testing and the worrying.

Thanks as always for all your posts and prayers on Facebook!! I am blessed. Mahalo🙏