Nicki,

I feel like the odd man (person) out since I had the primary tumor at the base of my tongue, not my tonsils. I also had a PEG tube but for some reason I could not use it. When I tried, I usually puked even the liquid. The doctors had a lot of theories but never could make it work for me. I lost about 70 lbs and got down to 145 before I started gaining some back. It took about 8 months before I gained any and in three more months I gained a total of about 25 lbs. I really hope this is where it stays, too, by the way!

I am sorry you have had to find us but glad you have. The journey won't be easy but there are many that have traveled the road before you. Educate yourself and be sure and take care of yourself. You will be forced to lurk in the shadows, willing to leap over tall buildings, stop steaming locomotives, etc., on a moments notice. Find a phone booth for quick changes but be sure and schedule some time to unwind periodically. I would never have made it without my wife or at least I am so grateful I didn't have to try.

I will be praying for both of you and ask Him to provide the wisdom and the guidance to the medical team to provide the absolute best treatment possible.

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