Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | The real difficulty is that we are all unique. No matter how many trials or how much data is gathered, there will always be those the fall outside of the statistic confidence interval, assuming normalcy. I remember the nurse and pharmacist outside my infusion room arguing whether the last dose of Cisplatin would kill me or not. I remember the Otolaryngologist clearly telling me he would cure me or kill me. I remember my mask fitting so loosely after the cervical spline block was attached. I remember feeling the heat of the mask on my neck during the last week. I remember a strange smell somewhere in the top of my head that reminded me of bleach and how it turned to a burning flesh smell the last week of radiation. I remember all the docs post treatment that told me I was the only one to experience what I am. I remember as my breathing ability started declining the pulmonologist telling me I just needed to try harder to breathe. I remember the docs finally telling me what was really going on and nothing could be done to help me other than just waiting to die. I remember them telling me to medicate out when my legs stopped working last December. I remember riding 35 miles in the bike last Friday!
My doctors tell me often I was aggressively over treated. I was told to accept the treatment prematurely aged me by 30 years. I just say WHATEVER. If we just knew what factors we bring to the party when treatment plans are devised and how they might affect treatment...well this would be a walk in the park. We don't but if they could just find funding @ about $171/minute to research this I believe it would be huge not just for us but for breast cancer patients as well.
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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