Justlilone,

Please try not to be defensive. Some of us have been to hell and back because of casual doctors and I must admit the attitude they have towards your cancer seems pretty laid back. I spent 7-8 months from doctor to doctor complaining about a hard lymph node that eventually got as big as my thumb. I went to an allergist, an oral surgeon, an internal medicine doctor, a plastic surgeon, a family physician, etc. They all told me not to worry and keep taking antibiotics. I will be frank with you, I am very angry, not at you but at the doctors treating you. So many people have died while the doctors had a wait and see attitude. I re-read Gary's post many times and I don't think he was really doing much more than complimenting you on making the decision to quit smoking. I have treasured so many of his posts and the great contribution he has been on this forum.

All that said, this is a very aggressive cancer and you find a comprehensive cancer center to get the real experts working on your peace of mind. I had an inside line in that my mother had struggled with ovarian cancer 1999 and 2000 and her terminal stage was in my house. This got me aquainted with the experts in Dallas. When my diagnosis came back as cancer, I got on the computer and sent emails to everyone I knew and the resounding recommendation was a list of who I should have on my oncology team and the rest is history. I have had to push, ask questions, pull, tug, irritate, etc. It helps them when the head of one of the best OB/GYN oncology groups in this country tells them the nickname he gave me back in 2000, McGuyver. I am not sure if I spelled it right but he was the guy on TV that found a way to make anything work and was an inventor of sorts. I stay on them until I have peace of mind that I have done everything possible with them (or somebody else).

We are all part of a very special "club" after having been through difficult times because of our disease or someone very near and dear to us. Sometimes even us AND someone very near and dear to us. WELCOME to the club! You have earned your spot and you can lean on any of us as much as you want. Nobody should ever have to do this alone and you are no exception. I try not to get too religious with people until I know they are comfortable with it but God has placed you in this path and all of us are here together for a reason. Whatever you need, ask and it shall be given to you!

God Bless you and I want you to have peace of mind! If you don't mind, I will pray for you every day until you ask me not to.

Ed


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