Shawn, I'm saddened by your turn of events and especially that you are being so hard on yourself. All of us went into this maybe a little blind than we are now. You could have done many things different and still be right where you are. Cancer is a strange bird. Take a little time and relax a bit as you choose your next steps.

My only regret is that I wish I would have stopped the radiation and asked more questions first, when the mask got loose from weight loss and second, when they moved the radiation center to a new facility. Also, I wish I would have demanded more kidney testing before any MRI contrast was given. I believe that is one of the contributing factors to my fibrosis that appears will kill me at some time. That is another real irony, to be cancer-free for 10 years and end up dead from the treatment. I won't go quietly and I will be researching and attempting to figure out how to reverse radiation induced fibrosis till the day I stop breathing. Or at least stop breathing for extended periods. I already stop often enough throughout the day and night!

I hope you know you can PM me any time for any reason. I'm just a click or two away. Even if you don't see me around here I will get an email notification.

Hang on there, Shawn, and clear your mind of all the trauma so you can do a bit of research and help formulate your plan of attack. It ain't over till it's over!


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