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| 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 | 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
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