After a glimmer of promise the Zactima/Docetaxel trial didn't work. From June to early August the nodes didn't grow- good. Beginning in mid August, pain and loss of mobility rapidly increased – very bad. The October CT scan was moved up to September and showed the nodes rapidly increasing so on to premetrexed (Alimta). The swollen nodes were pressing on a nerve bundle so I couldn’t walk and was in great pain. It took a few days in the hospital to regulate the pain (I’m on a 75 mcg/hr Fentanyl patch) and decrease the swelling with steroids. I'm home now, fearing the beginning of the end - stuck with the all too familiar fears and uncontrollable sadness about it all.
But for today, I'm focusing on today, no pain, I can walk, my granddaughter, Erin, is here being my best medicine. She'll be one on the 24th of October. My wife, children, a few neighbors and some of my daughter’s lifetime friends will be hanging around with us this weekend, which is beautifully sunny. My daughter’s friends are the ones I coached in soccer or T-Ball and my wife led in Girl Scouts since they were five and six years old. Then we watched them grow through high school and college and on to productive adult lives of their own. How wonderful to see life unfold in such beautiful ways. I decide that no disease can take that away. I found comfort in a belief that my life has mattered and that brings with it a small sense of peace that I refuse to let this ##**% disease rob me of.
When Erin was born I was worried I'd never make it this far, but I have and in the midst of this black hole of sadness I'm going to enjoy her as long as I can. I have always found it hard to read of all your struggles coping with this disease, it strips me of denial – my coping mechanism of choice. But this disease can not rob me of all the wonderful things I have had and done in my life – I’m certainly not ready for that to stop. Who is? I think know something about what we are all going through and offer this post as a chance to try to find peace in this mess.
As always I pray that you and your families find some moments of peace to help you through this storm.
Dan Peters