” Sally Toad”

Hi Y’all!!

I thought I would come back and give an update. Since my last post so much has happened and I feel it is important to talk about for several reasons. The first is this……….

Yesterday i had an appointment with a new doctor. He is the founder of a research center that is currently holding about 20 phase 1 clinical trials all of which are immunotherapy. As I was giving my cancer story he was counting the lines of treatment I have received. He felt comfortable enough to talk to me straight as a medical professional and I am sure the story sounded like a linty of medical terms and professional jargon to my poor sister in law who was attending the appointment with me. As the appointment continued I started thinking about this journey. To me it was just chemo and radiation with a side of clinical trial..lol BUT for the FDA it was a list of what we called failed attempts. I was up to my 6th line treatment by the time the story finished. I couldn’t believe it.. to me it was just different bouts of gemzar/cisplatin…. our normal cocktail for this cancer. To me there didn’t seem so many treatment attempts and then I began thinking what this journey must look like to those who are not living with cancer… crazy.

As everyone knows from my previous post I have had a long journey with this cancer. This August will be 6 years. I know her well. At this point in time I feel it is my constant life companion. We live in close proximity to each other and are in constant war…. I knock her out for awhile and then damn is there not a bitty tadpole taking up shop..

I am doing well … strange to say throughout this journey and it was strange to think that I have failed treatment attempts because honestly it was not treatment failure to come on and off chemo, try a clinical trial, and recently to radiate the crap out of these guys. To me they are all winning treatments…. I am still HERE. His recored of failures was my monologue of wins. To me it was a journey of keeping this beast at bay. Tucking in Sally’s babies and sending them on their way. And so today I think what will medicine do with a rapidly growing group of stage IV cancer survivors. For me this has become a chronic health issue. I am not seeking cure as I know we are not there yet BUT I can live with the cancer I have if we do it smartly…. staying just one step ahead of Sally’s babies. So…. the question is how do you live with cancer….

This is the question we need to explore. Life becomes a constant vehicle of change. Their are moments of crisis and then times that you take a pause… hold still ….. and then ramp it up again. As treatments progress and new drugs are approved we are going to see that this now small group of survivors are going to grow , going to heal, and finally maybe even see a cure…. HOWEVER we are going to LIVE.throught it all. As one of my favorite doctor says ” we are going to kick the can down the road ” until we are there!!

Thanks everyone… I think each and everyone one of us should really think about how we are survivors. For me there is no thought of giving up…. and I am inspired by each and everyone of you who have shared. There are more long term survivors out there than we are aware of. I think this is because the medical literature has not caught up with what is the reality. People are living and succeeding in having a meaningful life with this awful disease. It is my vow to somehow put something out there in the literature that will demonstrate this. There is survivorship with this cancer and by sharing our stories we will hopefully encourage each other and maybe inspire medicine to start documenting that. Hugs to all my cca fighters!!