#37673 07-16-2004 05:10 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks, everyone, for the encouragement. I had more set-up X-rays today and am sporting some cool purple magic-marker lines on my neck. I've been getting some strange looks for sure as my wife and I run errands around Phoenix... wonder why?
My doc said he felt really good about my plan (33 days, possibly 36 if my skin holds up OK) when we talked today. He went to extraordinary measures to spare my spinal cord any more radiation as well as my esophogus. He told me basically, it doesn't get any better than this with it being so aggressive. I feel as good as you're going to feel about these things.
I plan on bringing a CD player/radio and trying to listen to AM sports radio (if you can pick it up in those type of rooms), music, books on CD, whatever. I've just got to keep my mind occupied... Otherwise, it goes south on me and I start freaking out needlessly (like the first couple of times last time around when I pictured the radiation machine being "The Emperor" from Star Wars, zapping me with his blue rays -- long story)...
Prayer, of course, will be part of the routine before, during and after. God and I are getting well-acquainted these days...
Blessings to all of you -- I'll be available for autographs after my marathon sessions... haha...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37674 07-16-2004 06:11 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Eric,
I'll be looking for that autograph! You'll find a way to handle this. He doesn't give us more then we can handle. He must believe you to be a very strong person.
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#37675 07-17-2004 05:11 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks Minnie -- I read a quote from Mother Teresa recently that made me laugh:
"God doesn't give us more than we can handle, but sometimes I wish He didn't have so much faith in me..."
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37676 07-17-2004 07:24 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | That quote from Mother Teresa made my day!! SMILE!!!!!!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37677 07-17-2004 04:19 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | That reminds me of my feeling when I was under the mask for the first time and fighting so hard to keep from panicking - I kept telling myself I can either handle it or not, and even if I can't handle it, I still have to deal with the situation - I do not have that kind of trust in God, so I could not be quite sure it wasn't too much for me. And how proud and grateful I was when they took the mask off and told me I had done fine - and how disgusted I was when they told me I had to go upstairs and get a scan under the damn thing the same day. But every day when I got through the treatment, I felt the kind of pride in myself that you can understand, but those who haven't been through it can't.
And Eric, after each one of your hour-long treatments, make sure you remind yourself that we are all proud of you for surviving another one of them. Does this make any sense?
Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#37678 07-19-2004 03:55 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 | Erik,
To help you get through this, besides prayer, try to focus on the what is just around the corner...HOOPS season! As a true born and educated Jayhawk, this is going to be a(nother) great season for us. If Dickie V does not put Wayne Simeon on his first team, I will have to go visit him...baby.
Anyway, something to help get your mind off it if only for a short period. I am sure you are well versed on football. As a Jayhawk we only call football season that short interval between hoops seasons.
I will be cutting to the front of the line for your autograph in Las Vegas! Having earned the nickname of JarJar Binks during my treatment, I think we could share a couple of Star Wars stories, at least.
Your faith and your strength will easily carry you through! May God continue to bless you and I pray for His comfort, peace and love to fill you especially during your hour on the table.
God Bless,
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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