Paul, it saddens me to hear this from you. I know there are some that have gone through more than others but the powerful story you share gives each of us not only hope but determination that no matter how tough the journey has been, people like you and Charm dug deep and made it as far as you could...and then some. I stay away because I don't want to discourage others. My case is so rare, although much more prevalent than what I originally believed or was told. I honestly don't know if I could have fought this hard to stay alive as I did if it wasn't for you. Yes, I struggle with every breath and about every swallow these days, am on a ventilator type machine to make it through the night since my body no longer breathes automatically but, again, I would not be here had I not known about your story as well as Charm's. You truly inspired me to get up and live, regardless of what the medical community told me or believed. They said I wouldn't make it to October yet I rode 35 miles in the bike Friday and am entered in a 100 mile endurance race next month! You were an integral part of me being able to do this.

I don't get involved in the "prove it" discussions like you do. I could not take that on a regular basis as you do. I don't really care who believes me or not since I know what I read and I know what I did and I am here to prove it. My proof is me although I developed my own personal plan after conventional medicine tossed me out with the bath water. I read textbooks, studies, trials, etc., pertaining to cellular biology, hematology, radiation damage, nerves, motor neuron diseases, neuropathways, vascular disorders, digestive disorders, cachexia and a few other topics because I was told to lie down and die almost a year ago. I have a room full of stuff but at the end of the day, I eat lunch with high level oncologists and metabolic disorder specialists because I understand and talk their lingo. I did to help me but also to help them and spark an interest to study how to pull people out before they die. It is unacceptable that as many as 40% of the people that die during cancer treatment succumb to the treatment and not the disease. I will go kicking and screaming until someone listens. I am a lot like you. I have learned a lot from you always. It is very difficult for me to even type because of losing fine motor skills in my hands now and I can only imagine what it must be for you to type all you do at night...in the dark!

Never think your opinion is not valuable. I want to reiterate...I would not be here today if it weren't for you my brother from another mother. Your depth and breadth of knowledge on just about any topic totally blows me away!

You can clearly see that very few of my posts are even replied to except to tell me I did something wrong or don't know something. I could care less to be honest. I don't care if I win a popularity contest but pity the fool who disregards the message because of the messenger.

Ed

Last edited by Uptown; 07-14-2013 05:11 PM.

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023