One important thing to always remember and keep in front of us throughout this battle is to arm yourself with all the knowledge that will help you as a patient or caregiver to make it through this horrible disease and recovery process. This means we have a tremendous responsibility to know the inherent dangers in all medications and combinations of medications that could prove fatal. As both a caregiver and a patient/survivor, the ony areas we can't be as dilligent as we want is in the sleep and relaxation processes.

I know, Delia, your emotions are raw from all you have been through. That is expected. Try hard to not be defensive but take the time to read all literature on all medications and any changes to what is prescribed is always approved by the trained medical professionals. Keep a list of all medications and review them with the most highly trained medication expert, the Pharmacist. They can tell you anything you need to know about interactions and risks of medication. They have spent countless hours becoming experts.

To end on my usual attempts at humor I have to relay a story. I am about as anal as my wife and between us we read all we have to and memorize way more than we need. I was one of the "lucky" ones that got a bad batch of patches that were recalled. There was a problem with the time release agent that meters out the dose. In one box alone, I got severely burned from the patch and complained it didn't feel like it was working because I hurt so much and fell down several times complaining because my eyes crossed and everything was just spinning. I was so relieved to hear it was the patches when I got a letter from the manufacturer that I had received one of the suspect batches. I got about a 50 page FDA questionaire but I was too medicated to comprehend what the hell they were asking me.

Great to hear from you Kim, by the way! I hope all is well with you and Dave.

Take care, get thicker skin and be thorough in all you do.

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