#16665 12-17-2004 10:04 AM | 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 | Randy,
I am so sorry to hear your news. Learn all you can about treatment options from the website. Arm yourself with all the knowledge you can gain so you have a good idea what they are telling you and what to expect. You can do this just as many before you have. Live each day as if it is your last. Tell everyone you love how great that love is, each and every time you say hello or goodbye. Take the time to make the memories now. Your life may never be the same but in many ways life will have more meaning to you than you ever imagined.
I am hoping for the medical team to find the best possible plan of attack for you to have every opportunity to beat this beast the first time around.
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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#16666 12-17-2004 03:29 PM | Joined: Dec 2004 Posts: 7 Member | | Member
Joined: Dec 2004 Posts: 7 | hi ed....
thank you....i am so sorry to hear about your mom. it must have been hard. i think this has been the most difficult time in my life. before this, i had never lost anyone close to me. my grandfather passed away 10 years ago, but i was only a teenager. so to see what my dad went through was very hard. he was real bad towards the end. he had punctured his ear drum, so when my mother would put in eardrops i would have to leave the room because i could feel her putting in the drops. he also had a g-tube and it got infected. so my mom would have to put some antibiotic cream on that, too. even when she did that i would leave because i could feel it. all he would do is pick. he had a sore on his lip that he would pick, too. i never thought i would see this day.
i know about the what ifs.....nut i guess since i just lost him, i'll be saying what if for a while.
i can't imagine how my mother feels. i feel for her. they were married for twenty something years!!! they got divorced and re married again!!! if they never got divorced they would've been together 31 years this year!!!
i think coming here has helped me a bit. being able to read about everyone else and others who have lost loved ones to this horrible disease....i am glad to find the support!!!!
thank you...
Pookie :-)
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#16667 12-17-2004 09:37 PM | Joined: Dec 2004 Posts: 9 Member | | Member
Joined: Dec 2004 Posts: 9 | Ed, Pookie,
Thanks for the kind words and wisdom. I'm continuing to learn as I navigate the website. I'm seeing three specialists this week, then I'll decide which course of action to take. Again, really glad to have found you guys and thanks for all the advice and support.
SCC, Stage 1-2, tongue, surgery 1-5-05.
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#16668 12-18-2004 03:32 AM | Joined: Dec 2004 Posts: 7 Member | | Member
Joined: Dec 2004 Posts: 7 | hi randy!!!
i hope everything goes well for you!!! we're always here for you!!!!!
:-)
Pookie :-)
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