Things have been exhausting here. I have officially "fired" my oncologist and start Monday with a highly regarded Lung Oncologist, Dr. Naomi Fujioka. It was literally a fight, with some high level strings pulled, to get on her calendar. I also have an appointment at Mayo Clinic on April 29 & 30. Mayo will assess my treatment so far and discuss options with me.
I am day two after my second chemotherapy treatment and I am wiped. My energy to interact with others or even get out of the house is pretty low. Craig is back and will join me at appointments to help make some of the now critical decisons, and Brigit is my research assistant helping determine options and assess drugs. Many of the new drugs are marginally useful, extending life only 2 months more than chemo and with vicious side effects.
Most important to me is quality of life, and my best chance at quality of life is NOW. Due to the poor prognosis with chemo, and the blow chemo delivers to quality of life, I am leaning toward stopping chemotherapy. I will listen to Mayo, I will discuss and bargain for best solutions, but QUALITY not LENGTH of life will be my focus. If my biopsy shows a mutation, then my treatment will switch to pills and provide a better prognosis. I am also hoping to gain access to PD1 trial drugs by being plugged in at Mayo, the drug only works for 1 in 3 but when it works, patient lifespan is expanded by multiple years.
More Options Explored:
I remain on a Ketogenic diet, fasting during chemo, hoping to slow the cancer by removing sugar.
I cannot use hyperbaric oxygen due to the chemo agent CarboPlatin. Perhaps in the future if I discontinue this chemo drug
Research from Harvard shows a very strong response in Metastatic NSCLC Adnocarcinoma (what I have) in response to Delta-9 THC. This research is still in animals with some human trials in Spain. I am looking into cannabis options and a few synthetic THC drugs that are already on the market. Unfortunately, I just left a medical marijuana state.
Thank you everyone for the thoughts and prayers, flowers, gifts and supportive email. I apologize if I do not always respond, I think all of my energy has gone into trying to find a path through this grim medical grind, while still grabbing on to the sparkly moments. Brigit and I have laughed a lot, she threatens to "out" me on the blog, saying my behavior is ridiculous and it would shatter my solid blog image. I think, if you know me, you've likely been witness to my sillyness. We began planning my O-Bitch-uarie last night and discussed having a funeral that I can attend, I guess it's called a Celebration of Life. We have had fun with our twisted think-tank dinners, gathering friends in our tiny apartment, using spoons because we don't have forks, and laughing a lot. As always, Life is a fond adventure.