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#33511 07-08-2004 03:18 AM
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Sabrina,

Thank you for being human and especially thank you for being YOU!!

As I read your email, I sobbed and remembered how it REALLY was. The side you didn't tell many people because you didn't want them to worry. The side I hid from most people outside of the home but those inside had to see. The side that made me feel like I had let my wife and sons down. Yes, just as you say, it sucked and it was godawful! mad

It's a part of my life that I wish I could have fast forwarded at the time but it seems to rewind to that spot at the oddest moments. I thank God often for where I am today. wink

Thank you for sharing the truth, the whole truth and nothing but the truth, so help you God!

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
#33512 07-08-2004 04:12 AM
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Sweety and Sabrina-
Your posts brought tears to my eyes too. It is a very hard journey that only those going through it can really relate to. You get through it because you only have two choices -- you survive or you die. BUT, you don't go through it alone!! And although it is tough, you can survive! There is a light at the end of the tunnel. Do what you have to do to survive the journey, shout, cry take whatever drug numbs the pain mentally and physically, because you will heal and become whole again after a few months! My prayers are with both of you! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#33513 07-08-2004 06:18 PM
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Indeed Sabrina, That was one of the more concise summations of the last weeks of treatment I have read. Yes being in a "funk" is absolutely acceptable, I can tell by your expression you look better than you think! I do know it does get better. That goes for you too Sweety, the bottom line is: it is a test but you will get better.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#33514 07-08-2004 07:05 PM
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Sweety, Sabrina, yep, I think maybe we tend to grieve for what we lost. Even though we may have survived the cancer and the battle, things never will be the same. Yep, I pretty much look ok now, some say even better now than before the cancer, but I still miss not feeling like there's impending doom, and miss just plain feeling GOOD!

I wonder if I"ll ever get used to the fact I can't move my arms like I used to, that my tongue is gonna pretty much always feel strange. And I wonder if this tightness I feel around my neck is EVER going to go away.

But, I also learned to cherish the time I have, to live life and grab onto it, not be content to let it pass me by.

In the spiritual, cosmic scheme of things, I wonder if I didn't get this for a reason. My pastor says it's because I didn't pray hard enough and it's satan's work, (oooooohhhhkkkkaaaayyy) and I took it as a message to quit being a bum and DO SOMETHING!!! Especially since it seems at this point the cancer is in remission and I'm about as healthy as I'm going to get at this stage.

I go in next week for another follow up PET/CT, this one is the one year from end of treatment for second go around (HUH?) and I'm having the usual pre-scan jitters. So I guess I'm getting a little philosophical this afternoon. But the next day I sign papers incorporating my own business, ever the optimist.

I guess I feel sometimes I'm the little ball in a game of cosmic pinball, and one of the flippers is broken.

Sorry for sort of hijacking the thread, but just sort of "spilled out"


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#33515 07-09-2004 12:29 AM
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Hi Bob,
you should remind your pastor about Job -he prayed plenty and was a man of great integrity in his faith. He was still allowed to suffer. At least his story had a happy outcome. Pastors that say stuff like that drive me nuts (besides he sounds like one of Job's so called "friends". I, unfortunately, have met more than one pastor that was a lousy counselor. I really believe that some pastors shouldn't even talk to people one on one unless that have either professional training or a spiritual gift of counseling. Oh well - none of us are perfect.

I do believe, however, that disease is from Satan as well as the fear, helplessness and hopelessness. His favorite and oldest trick is to attack our minds and what better way to do that then with a life threatening illness. I heard a term today that was a wake up call "she was stricken with cancer". I never really thought of being "stricken" before.

I don't think that the reason is as important as what we do with it. We are given the opportunity as Christians to demonstrate our faith and the "fruits of the spirit" working in us under tremendous duress and many are watching (and listening).

My prayer group was encouraged by my outcome since so many they prayed for didn't survive. I am highly visible in my church being a bass player on the Wednesday worship team and Sunday programming team.

Another thing that churches often forget is that a major part of Jesus ministry on earth was healing the sick. That seems to be largely ignored in modern times.

This evening I have an earache and a sore throat (on the side opposite the cancer) so you can imagine where my "magic, magnifying mind" wants to go with it.

Thanks for sharing - it's sums up pretty well the space I'm in these days.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#33516 07-09-2004 03:22 AM
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I have some thoughts on the subject in this thread drift (highjack) why don't you repost a new thread?


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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