Clinical Trial Infusion #12💉

Monday April 23, 2018

12:30pm:
I’m at UCSF right now. Waiting for my ‘drug’ to arrive. I thought I would try to chronicle the day so others would know what being in a trial looks like.

We live in Danville and the hospital is in San Francisco. We normally give ourselves an hour and a half to get here. Today the traffic was light and we made it in less than an hour! Upon arrival we have to check in and get a pass. We then wait for our clinician Lauren to escort us to our room. She takes my vitals and makes sure I’m still able to participate by asking a few questions. She then orders the ‘drug’. As you know, none of us know if it’s the drug or a placebo. It’s a worldwide double blind trial with Roche/Genentech. Right now I’m in the room and just had a light lunch. Bob is with me and we are just waiting for the drug to arrive.

When it arrives I will move to another room and get set up to receive it in my right wrist. At least I hope they can find a vein there again this time! Last time it was pretty easy. In the past it took several tries and my arms were full of holes. I will stop now and finish my journey once the drug arrives 😀

12:59pm:
We are now in the other room and I’m in a comfortable reclining chair and have NetFlix on the TV. I’m going to watch some old Law & Order SVU shows to keep my mind off of things. The drug hasn’t arrived yet but the nurse should be in soon to set up the line.

1:09pm:
They are heating up my veins now. They use a heat pack and then wrap it in a towel. Burrito style! This seems to help my veins pop so they can find the best place to insert the needle.

1:52pm:
After two tries they found a vein on my left arm this time. Now I sit and wait until the infusion is complete. After that they follow with a flush. I normally watch TV or take a nap. They are getting me a warm blanket too which I love. I am getting really tired so I will stop here and close my eyes.

2:46pm:
The drug and flush is done and now I sit and rest. I have to stay here for an hour and I can’t be alone. They need to make sure there are no side effects. I fell asleep for a few minutes but now I might watch some more SVU. I’m feeling ok. A little tired and worn out.

3:36pm:
They are removing the IV now and about to take my vitals. I should be able to leave soon. The bad news is the drive will probably take us almost two hours because it’s San Francisco to Danville and everyone will be on the road. We left our house at around 11am so as you can see it’s a big commitment, but it’s worth it! Without trials we will never find a cure. Please consider getting involved by signing up at trialmatch.org or you can go to the website alz.org/trialmatch.

5:24pm:
I'm home now. Sitting outside in the shade and listening to the birds singing. I'm exhausted but feeling ok. It was a long day but it's all part of my 'job' now. Without trials we will never find a cure. I am thankful UCSF is nearby. There are many people who fly to San Francisco in order to be part of the trials.

I hope this little journal was helpful. Their protocol is very specific and every time we go its exactly the same. The only variables are the traffic and the ability to find a vein quickly 😞

We appreciate all your continued support, prayers and donations. God bless you🙏

Happy Spring🌹

I think the rain is finally done! At least I hope it’s done. Grey skies and wet roads make me a little gloomy and nervous, especially when I’m driving. I am very careful about my driving because I know it’s a precious gift at this point, almost a privilege. It may even come to an end this week! On Wednesday I have an appointment with the DMV to take the written test. If it’s similar to what I had to do last year I will also have a cognitive interview.

I’ve been taking the practice tests online and failing them miserably. They give you the correct answer when you miss it but I can’t seem to hold that in my brain long enough to get it right the next time. I’m sure that’s pretty normal for someone with Alzheimer, and I do have issues remembering conversations and/or articles that I’ve read too. Last year I passed the test. I only missed one question. On the practice tests I did really well too. But things change for me as time goes on and as we all know this is a progressive disease. So what’s my strategy? What will I do if I can’t drive any more? I’ve got it all figured out😊 Bob and I already talked about it today so we could be prepared. The truth is if I do pass the test this year, I probably most certainly won’t pass it next year.

So we decided to face it head on, just like we’ve done with the diagnosis we got 16 months ago. We are going to find a driver who can be available most days to get me where I need to go. Uber and Lyft are also an option, as is asking my friends and family to help out. I have a bike and we are fortunate to have many stores and restaurants about a mile away. I am determined not to let this get me down! I love to walk and have walked to the grocery store and Starbucks  many times by choice. Going forward I would potentially be doing it out of necessity. That’s ok. We will figure it out💜

Will I be sad if I lose my license? Absolutely. Will I recover and bounce back? Definitely! This is part of the reality of living with Alzheimer’s and Bob and I are prepared to face all the challenges that come with this disease head on. So I will continue to take the practice tests up until I walk into their office, but I’m also going to release this and give it to God. ‘Let Go and Let God’. I’ve been doing that my entire life and it’s what works for me🙏🏼

Besides thinking about my driving test and taking practice tests we have been having some fun! We were up in Chico this weeekend and had a wonderful time. We had a great dinner with Carol & Caitlin on Friday night and spent most of Saturday walking around town. I got to see my friend Mona who works at the Gabrielle Ferrar jewelry store. She’s the one who helped me design my ‘one of a kind’ wedding ring. If you’re looking for something special and that no one else will have, I recommend you meet with Mona. We also had a blast at our friend Frank’s 50th birthday party. It was so good to see the Marinello’s and to watch Maria dance on the table to the ‘dueling pianos’. All in all a great visit.

I had infusion #11 and it went well. No bruising and they found my vein easily. I think they’ve determined that my right wrist is the best place. It’s always exhausting but it’s part of my new ‘job’. Without trials there will never be a cure.

I encourage all of you to look at my previous blog post and sign up for Trial Match. They need people who don’t have Alzheimer’s to get involved too! Every 65 seconds someone is diagnosed with Alzheimer’s. If you have any free time I encourage you to reach out to your local Alzheimer’s Association chapter. There are many ways you can help end this epidemic🙁

One of the highlights of the past few weeks was visiting Green Valley Elementary to see Ryan’s 5th grade class. They put on a play about the Revolutionary war. It was very informative and 100% accurate. Ryan played the role of George Washington and he took his role very seriously. It was wonderful and I’m so glad I now have time to attend these ‘once in a lifetime events’ for our grandsons.

This blog is pretty long so  going to sign off now😘 Thanks for all your love and support and for getting involved (if you can).  With blessings to all of you🙏🏻

2018 Alzheimer’s Association Facts & Figures

https://www.youtube.com/watch?v=aa31GC_T6iU&sns=em

I’m sharing the recent 2018 Facts & Figures here so that everyone can see the impacts of this horrible disease. Please get involved and sign up for trialmatch so we can find cure! https://m.alz.org/clinical-trials.asp

There are also many other ways to get involved!! You can help with the Walk committee, advocate in your city & state, volunteer at events.....Just to name a few. Thank you all for your support and please let me know if you have any questions about this. Contact your local Alzheimer’s Association chapter to see how you can help us #ENDALZ🙏

My Fearless Heart💜

Wow, it's been a few weeks since my last blog. I guess I've been either too busy or haven't taken the time to sit and reflect recently. The days certainly seem to fly by.

I was diagnosed with Younger Onset, Early Stage Alzheimer's in the summer of 2016. It was either June or July, I don't remember the exact date any more. I didn't start blogging right away. I didn't even know that much about blogs. After I met with the Alzheimer's Association and was given a list of blogs and books to read, I realized that blogging and getting my feelings out and telling my story would probably be helpful and therapeutic. My first blog was October 2016 and I've written 57 blogs since then. They've been viewed and read over 46,000 times. I find that remarkable and it's also a reminder that there are many people around the world who want to know what living with this disease looks like.

Even though my last post was almost a month ago, just today I've already had 54 views from all over the world! People in the Ukraine, Ireland, Bangladesh, Indonesia, Russia and of course the United States. It's remarkable to me how small the world is and how hungry we all are for information. This disease does not discriminate and so it makes sense that people everywhere are searching for answers and stories about what living with Alzheimer's looks like.

The past few weeks have been busy for our family. February 28 was California State Advocacy Day and Bob and I attended in Sacramento along with over 200 other advocates from around the State. It was a wonderful day and I had the opportunity to speak and share my story of living with the disease. All of our meetings went well and we really enjoyed the day even though it was exhausting for me.

The following week I had my 10th infusion for the Roche/Genentech clinical trial. They normally have a hard time finding my vein which is always very painful. This time they agreed that their head nurse should be taking care of me since the bruising from the previous injection lasted over two weeks. Thank goodness it was a painless experience this time! It is exhausting though and lately I've had to close my eyes and rest during our time there.

That same week I was thrilled to receive an award from the NorCal/NorNevada Alzheimer's Association at one of our top fund raising events "Memories In the Making". What an honor!! I had the chance to speak and to thank everyone for their support. Including my amazing husband and my youngest daughter who was there with her boyfriend. I chose to dedicate my award which was called the "Fearless Heart Award" to my mom. I wrote about her a few weeks ago and she has been on my mind. She was a fearless woman and she taught me to trust God, be strong and kind, and to be loving to every single person I met. My strength and determination are gifts from her.

Thank you to the Alzheimer's Association for giving me the opportunity to speak publicly about a woman who loved me unconditionally and shaped my thoughts and actions. I do have fear about what the next few years will bring but I do not focus on that, I focus on today and on what I can do to make a difference and help us find a cure.

Thank you all for your continued support and prayers. You lift me up and your encouragement keeps me going. God bless you all🙏

My mom💕

I need to talk about my mom. I need to share how she influnced me and to honor her. She helped me to be the strong Christian woman that I am today. She was friendly to everyone and rarely raised her voice or got angry. She also taught me how to knit, sew and make some great meals on very little money. She and my dad got divorced when I was in grammar school and she did a darn good job raising four kids without him being there to support her. Although sometimes when I got in trouble he was called so he could ‘set me straight😊’.

I was watching the Olympics last night. One of the contestants had recently lost her mom and it brought up some strong feelings for me. I miss my mom. I miss her love, her smile, her strength. We were raised as Christian Scientists and went to church often. I think there was Sunday School too, but I also remember going to church on Wednesday nights. We did not go to the doctor and believed that through prayer you could be healed. I am here to tell you that it does work. I’m not sure why the Olympic moment last night brought me to tears. But I do know that I am very grateful for the upbringing and the faith I had growing up.

I definitely go to the doctor now. I am grateful for the clinical trial that I am currently involved with. But I also believe in God. And as a child when I was sick I would pray and I would feel better. I knew God was always with me and that gave me comfort, and healed me and helped me through some tough times.

I know that now too. I am not afraid. He is in control and having Alzheimer’s gives me the opportunity to share my faith and to lean on Him to help me through all that Alzheimer’s is going to throw at me. Am I scared? Not at all. Do I wish this didn’t happen? Yes! But with all of you and with the love and support of my family, and with the faith that God has given me this ‘gift’ for a reason, I know I will be OK🙏

Good month so far👍🏼

Time sure does seem to fly by these days! The weather has been chilly but warm in the afternoons. I am really struggling with getting enough sleep but I am still functional and feeling pretty good.

My last blog about addiction really hit home with many of you. I received over 1300 views and several comments and some private messages from friends and family. I think we all know the dangers and the sadness addiction can bring to a family. I did hear that my daughter is in a program and getting help, although I still have not talked to her or heard from her. I will continue to pray for her and look forward to seeing her and repairing our relationship when the time is right.

Last week I had the privilege and honor to attend my first Alzheimer’s Assoc National Board of Directors meeting down in Hollywood. What a fabulous organization and a wonderful group of very senior leaders who are fighting hard to raise awareness, help those living with the disease and find a cure by working with the top scientists in the country! There are many promising things on the horizon and I look forward to learning more and deepening my connection with everyone I met!

During an update on the research side of things, I learned that double blind trials are the most effective. That those who get Alzheimer’s before age 40 (like the woman in the movie ‘Still Alice’) get it from a Beta Amyloid mutation and it’s rare. I mention that because many of my friends are worried about the progression of my ‘Younger Onset’ diagnosis. The movie was pretty scary and ‘Alice’ progressed very quickly and passed away young. I don’t have that kind of Alzheimer’s. I have the typical ‘vanilla’ type which progresses slowly - thank God🙏🏻

The other thing that was great about our trip to Hollywood was that Bob got to work during the day when I was in meetings, and at night he was with me at the dinner events and research presentations. I did have some free time to walk on Hollywood Blvd and after several miles, and several hundred ‘stars’ on Walk of Fame, I finally found Ellen❤️ As many of you know one of my goals is to meet her and be on her show. I want to thank her for the joy she brings to me, especially in light of my disease. My doctor told me to ‘do what makes me happy’ And Ellen and her show do just that!! She makes me laugh and cry and brings me out of my funk when I’m feeling down 🤣 I continue to have faith that one day it will happen 🙏🏻

Infusion #9 for my Roche/ Genentech trial was very long this time. It took four attempts to find a vein and both of my arms are still bruised!! I sent a picture to them so we could come up with a better strategy next time...I certainly hope so. I was there for many hours and was so exhausted that I fell asleep in the chair during the procedure.

Our final days down South were spent with our cute little grandson Benjamin who turned one!! He’s such a doll and is so sweet and fun to be with. Oh course it was great to see Phil, Elizabeth & Jonny...but Benjamin stole the show💕

It’s great to be home and to be able to spend time with friends and walk in the neighborhood. I am grateful for so many things and am sometimes overwhelmed with all the love and support you all give me. Thank you! Thank you for being there and for going to lunch with me and texting me and sending me flowers and cards and candy. I am blessed and would not be doing so well if it wasn’t for your continued prayers and outreach. God bless you all💜🙏🏻💜

The sun makes me happy🌷🌞

The weather today is amazing. It’s 2:30pm and I’m sitting outside at one of my favorite local restaurants having an iced latte and a snack. I have on a T shirt and short workout pants and am warm and happy! I’m alone and I’m ok with that. I have no plans today so I decided to just relax and spend a few hours outside. When I’m done here I plan on walking on the Iron Horse Trail for a few miles. Yipee 🎉 I know we need the rain but this sun really brightens my day.

I’ve been wanting to talk about a dark subject and being outside and in the sun will make it easier. Drugs are the devil! They have entered my daughters life again and have taken her away from me. They have taken her away from her sons, and from her sister, her partner and probably many others that I don’t know about. She was my caregiver and was living with us, so her absence is felt daily. I’m sad, I miss her. But I know that releasing her, giving her to God and letting her find her way back to recovery is the only way to deal with the pain.

I’m not ashamed to talk about this. I’m not embarrassed. I’m sad and angry that so many people in the world are effected by drug and alcohol addiction. Our world is broken. We don’t have the tools to deal with life (in most cases). We aren’t taught self esteem in grammar school. Or how to deal with abuse, angry parents, addiction, bullying and teasing. I don’t know why she struggles with addiction but I do know she doesn’t want to be an addict. I also realize that she needs to want to get sober more than I want her to. She has to work hard and go to meetings and do the very difficult work that it takes to stay sober. That’s not fun, that’s not easy. But she needs to ‘work it, because she is worth it!’

I know drugs and alcohol and other addictions have also touched many of you. Some of you have probably lost family members and friends due to overdose, suicide or bad choices. I’m not alone in my pain. I do have help with this though. I have a great church, a pastor and friend who prays for me, my daughter and for our family.  I have a huge network of friends who love me and know what’s going on and continue to lift me up and surround me with love. I have a husband who is very upset about the situation but has provided care for me and makes sure I have people around me when he is gone. I have my youngest daughter who is also dealing with losing her sister, but at the same time is here for me and spending as much time near me as she can.

I’m hopeful. I know God has a plan. I know I will see her again some day. I pray that she gets the help she needs to get her life back on track. I will never stop loving her. And I will never give up hope. I miss her but I won’t subject myself to another ‘false start’. When she is sober, when she has completed a program, when she apologizes for her actions, I will be there with arms wide open and love in my heart ❤️ I pray that happens this year but I do not have any expectations for the timing. It’s in God’s hands.

I hope my story helps those of you who are also struggling with this problem in your family. You are not alone! AA and NA and other programs through your church will heal you, release your anger and help you deal with the pain.

Thank you for your support and prayers🙏🏻 I know I when the time is right I will see her again.....