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

Friday, December 9, 2016

Feeling the pain๐Ÿ˜Ÿ๐Ÿ˜Ÿ

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 nice๐Ÿ˜„

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❤️


  1. Pam, Thank you for sharing this personal and often painful journey. I am glad you can be in Maui and are feeling the feelings, such a disappointment but still hopeful. I am praying for you.

  2. Pam, our thoughts and prayers are for you at this time...we are with you, amd agree that everything happens for a reason, lokk upwards to him who is in control of all. Love and kindness to you, Leighton Phillips