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#34285 08-14-2005 12:10 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Barb,
I haven't been around for a bit but I still wanted to tell you how sorry I am for the rough road you are on. It sure brings back a few vivid memories that I haven't thought of lately. I ran across a couple of pictures my uncle from Japan took when I surprised him on his visit to the states. He wanted to take a bus from Houston to Dallas after a cruise from California through the Panama Canal. I didn't want to alarm him so I didn't say anything until I picked him up at the bus station. My hair was thin, wrapped and my neck was one solid red oozing mess. He was shocked and until I saw the pictures he emailed me, I didn't fully understand. When I saw them a few days ago, I reminded how bad it really was.
I remember the last few treatments and just hoping it would soon be over. I could smell a chlorine-like smell somewhere in the back of my brain that got more foul towards the end of treatment. The last 3 were the roughest for me. We found some stuff called Domeboro that cleared up my neck in 2-3 days. I just soaked a washcloth in it and applied it (directions on the box) and it was like magic for me. You might give it a try. Nothing else they suggested did much of anything except burn like hell.
I sure got tired of the insurance hassles, too. My insurance was about $1,000 per month and I still paid for a bunch of stuff out-of-pocket. I don't think I will ever recover financially but I won't give up easily.
I just finished a 9 month computer certification class. When I enrolled, I honestly did not think I would live to complete it yet I knew I had to plan more than the 4 weeks between doctor visits.
It will get better but not immediately!
I am hoping for the best for you and the journey to soon be behind you.
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
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#34286 08-14-2005 03:34 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Sorry Ed but I just saw this. Oh you had a horrible time. I am soooo sorry and so glad its over for you now. This is one nasty disease and the treatments aren't much better.  God bless, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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