FAMILY

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

Monday, April 23, 2018

Clinical Trial Infusion #12๐Ÿ’‰

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 ๐Ÿ˜€

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 ๐Ÿ˜ž

We appreciate all your continued support, prayers and donations. God bless you๐Ÿ™


Monday, April 9, 2018

Happy Spring๐ŸŒน

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 out๐Ÿ˜Š 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 out๐Ÿ’œ

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 me๐Ÿ™๐Ÿผ

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 epidemic๐Ÿ™

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 now๐Ÿ˜˜ Thanks for all your love and support and for getting involved (if you can).  With blessings to all of you๐Ÿ™๐Ÿป



Wednesday, April 4, 2018

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 #ENDALZ๐Ÿ™