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

Wednesday, December 28, 2016

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💜

Thursday, December 15, 2016

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 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?'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 🌺💕🏄

Friday, December 9, 2016

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 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 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❤️

Saturday, December 3, 2016

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 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🙏