Wednesday, May 30, 2018

CT results


The results are in – “CT looks really, really good!” The mass lesion in the pancreas is getting smaller but still around major arteries; no evidence of metastasizing. Continue to watch and wait. Unfortunately the GI issues are side effects from the radiation and to continue symptom management with over the counter medicines. This is quite common side effect, bowel mobility is compromised and there is no magic pill. David is pretty uncomfortable but good to know the back pain is not from the tumor. This had been a concern.
So it’s a great day! Enjoy!

Tuesday, May 8, 2018

Purple Light


5/7/18 – Routine, 3 month doctor trip to San Diego coincided with Two special events happening on the same day, one early day, one evening and they were less than 4 miles apart. The first at Harbor Island with the second on Shelter Island. It was an opportunity to make good use of our little motorhome, why not take it and then we’d be able to relax all afternoon without making an 18 mile drive to the house and back again. Parking at Harbor Island would be difficult but there was lots of room at Shelter Island so we parked there and took Lyft to the Harbor Island event. It was a beautiful setting and celebration of life for a dear friend’s mother. We had met her, her mom and her sister many years ago when we got involved with San Diego Basset Hound Rescue. As the sisters were sharing and things were said, it was impossible not to be remembering my own mother and my sister. Well of course the bassets too! Those basset hounds, what a lot of joy they brought.
There was also a great layout of yummy food. We all talked about what a nice place this was, on the water and all. So of course David thought it would be nice for his memorial but he wants it now – so he can attend. Hmmm, that sounds like David and he might be on to something.
We were going to just Lyft back but friends offered to return us to the rig and as a bonus they got a tiny house tour. We then had the afternoon to relax, change clothes, nap, eat dinner and attend event number 2, Purple Light. We were across from the port terminal so while enjoying our dinner we watched the Disney cruise boat head out to sea.
 Purple Light gathers survivors, families, and friends who have felt the impact of pancreatic cancer. This event hosts a ceremony to honor survivors and those who have been lost to pancreatic cancer by cracking purple glow sticks for each individual to create a powerful message of solidarity and to remember you are not alone. The purpose of this event is to ignite hope and remind of us why we fight.
It was a small gathering but I am glad we went. There was great food (invite said light refreshments but this was not my idea of light – giant burritos!). It was good to interact with others involved by the same cause. One speaker shared her story. They then handed out white roses, first to the survivors, David being one, and then to others who had lost someone to this disease. As these folks took a rose they shared a brief line or two about the person they’d lost, the common share was how quickly this disease proves fatal after diagnosis. The good news was that life expectancy has gone from 6% to 9% over 5 years. That’s why the goal to double it by 2020.
When we arrived we were all given a glow stick. Although it was not quite dark enough for full effect, this was a very moving recognition of people. As the persons’ name was read, those that were there in memory or honor of that person were to crack their glow stick (which activated the light) and hold it high. It was very mixed feelings when they got to the survivors and they read David’s name and we both cracked our glow stick.
It’s always good to share with others in similar situations. There were some who this was their first event and many who had been to this and other Pan Can events. Some who had done the walk in October and others who were going to. And we met a gal (Angie) who will be going to the Pan Can Advocacy day in Washington DC in June, as will we.
David’s next CT scan – May 28.