Update - it has been a while.

I am finally feelng somewhat better after my trip. I am so glad I was able to go to So. Cal. I knew it would be hard but I was determined and really enjoyed my week there. It took until now though to recoup.
Have not been able to get the pain in my ba k, tailbone and legs under control.
I finally took the doctors advice and upped the Fentanyl Patch to 100. I have slep a lot more, but it was the right thing to do as 75, was not hitting the pain. I keep thinking that if it wasnt for the pain, I wouldnt even know I was sick!
Iam still fulling out paperwork to keep my SSDI going. Because I have outlived the prognosis, they are re-examining my ability to work. So now they need a step by step examination of my normal daily routine. It is so hard to do. I dont have one! I get up every morning, but at least 3-4 days a week, it is long enough to shower and go back to bed as the paun is more than I can handle, hence the dose increase of the pain meds..
I never in a million years would have believed that one could have this much pain and function at all, and I have a high pain threshhold. But, I truly am truly. thankful to have thus far proven the medical team wrong on their ongoing pronosis! Everyday and each new experience is my blessing!
Yesterday, I was able to participate in the 18th annual Survivor to the Summitt here which is a Celebration of life and the They offer Group support for patients of all cancers, support for families and caregivers, as well as accupuncture, meditation, yoga, Reike, and massages at no cost to the members and their families. We have all cancers, all stages, and an amazing support system!
I am told a lot of cities nationwide are popping up with similar programs.... well worth checking it out.
major fundraiser for our Cancer Wellness Hosue which is a necessar
y and amazing organization here in Utah. My brother and sil were able to participate as volunteers which was amazing for me to have them ther. Nothing like taking a tram to the top of a mountain(or hike for some) to support all those fighting this nasty disease.