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 cleared๐Ÿ˜

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"๐Ÿ’œ

Tuesday, May 16, 2017

Mother's Day 2017

Wow! What a glorious weekend we had.  Mother's Day was perfect this year.  We all went to Tilden Park in Berkeley after church and had a BBQ, played some football and soccer and basically enjoyed each other. The holidays have taken on new meaning for me, and yes, Mother's Day is a holiday in our house ๐Ÿ˜ Any excuse I have to be with my kids and my grandkids is a blessing. Of course it was my daughter Danielle's mothers day as well, so we celebrated her too.

We spent some time walking around one of the ponds. It was beautiful! Danielle's partner Lisa shared that her mom's ashes were spread there. I love that idea. I love that Lisa and her family always have a place to go where they can 'visit' their mom and feel connected with her. I love being outside and I love the idea of having my ashes somewhere other than at a cemetery or in a box. I would like to do the same thing when it's time for me to go to heaven. I want my ashes to be given to my kids and family, but I also want them scattered so that there is always a 'place' for them to be with me. I find that comforting, and I think they will too when the time comes.

The weeks leading up to Mother's Day have been busy. The clinical trial at UCSF went well but it was a long day, and after the testing for the trial, KVIE from Sacramento filmed another series of testing so that they could use it in their PBS special on Baby Boomers. A few days later I had an appointment with the Social Security office. Wow, that was very difficult. It was another series of cognitive testing to see if I qualify for social security since I'm on long term disability now. All these tests and all the paperwork is extremely demanding and overwhelming. I'm just not good at those types of activities anymore. My brain doesn't comprehend or retain all the information.
 and it stresses me out.

We had a good turnout for the Rivet Revolution fund raiser for Move For Minds. I'm not sure how many bracelet's were sold but we sure had fun. And we made a video of me telling my story to Ellen! One of my goals is to be on The Ellen Show so that I can tell her how much she inspires me and keeps me smiling. Of course I also want to make sure everyone knows the 10 warning signs of Alzheimer's and gets to the doctor if they think something's wrong with them. My fingers are crossed that this will come true. Dream big, that's my motto now!! What do I have to lose? If she selects me to be on her show I will be thrilled, if not, I will keep on fighting and raising awareness on a local level.

The rest of May is filled with activities and tests, visits from friends and a short speech in San Luis Obispo, but as I've mentioned before that's my new normal. I made it through the testing and blood work that was done at UCSF on May 1st, but still have to undergo an MRI later in the month. If my MRI is normal I think I will be 100% cleared for the trial!! Fingers crossed and praying that it all goes well.

As I approach the one year mark of taking medical leave from Intel, I can't help but reflect on all the amazing people I have met because of my disease. The list is too long to mention but I have made some very dear friends and reconnected with some old friends from my past. I am CERTAIN that would not have happened if I wouldn't have gotten sick. Thank you all for continuing to support me, taking me to lunch, sending me notes and cards and visiting me when you're in town.

It's a perfect example of taking lemons and turning them into lemonade! Let's all drink lemonade and be happy, and get rid of those sour people, situations and feelings in your life. Rid yourself of lemons and be happy๐Ÿ’œ

Tuesday, May 9, 2017

Living life to the fullest

The last two weeks have been incredibly busy. I officially retired on May 1st. I've had newspaper interviews & photo shoots. A TV interview for a PBS special on Baby Boomers AND a full day of testing for the Roche/Genentech clinical trial. I enjoy sharing my story and raising awareness but I also need to remember to rest and not take on too much. I found myself exhausted and last week took two long naps. I thought I would rest for a minutes, but it turned into a three hour snooze fest ๐Ÿ˜Š I can't remember the last time I slept during the day like that. But obviously I needed it and since my doctor instructed me to 'do what makes me happy' I slept in peace.

This week is back on track with my normal activities of lunch dates and coffee with friends. The wonderful folks at Rivet Revolution are also hosting an event tonight at our country club. For every bracelet that's purchased they will donate $10 to my Move For Minds fund raising effort. All proceeds go to Maria Shriver's Women's Alzheimer's Movement (WAM)!

I'm still waiting to hear if I qualify for the clinical trial. Thinking positive thoughts and praying that this time I will be within range and move forward with the protocol. If not, I will re-evaluate and determine the best next steps. I don't think I will be as emotional about it if I don't qualify, but you never know. I seem to cry at least once every day. But instead of worrying or trying to hold in my emotions, I just let them flow! Some of my tears are happy tears and there's nothing wrong with that. Rusty continues to give me comfort and I'm reminded how special our animals are to us! They really seem to know what we're going through.

Having the freedom to feel your feelings without shame or embarrassment is something we all should be better at.I think too many of us try and keep things down and hide our feelings. But that causes stress and anxiety and sadness. Living with a terminal disease has changed my thinking about a lot of things! And it's all good! I'm more real now, I'm more honest and more intentional. I ask for what I want instead of going along with something that I don't enjoy. I try to give back in some way every single day. And I cherish time with my family and friends

Enjoy your day -- enjoy your family -- give back -- and take care of yourself!

God bless you and thanks for your support ๐Ÿ’—