#44097 10-26-2004 04:26 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Nicki,
Danny G. voiced exactly what I was going to post. I hit a severe depression when I finished radiation. I felt like I was sitting there doing nothing but waiting for "it" to come back. I cried all the time and held myself away from my family. It only took me a few weeks to snap out of the worst of it but the feelings of fear were still very strong for months and months. Cancer dominated my every waking thought. That does pass and gets better until we all find our own ways of dealing with it all while enjoying life.
Boy do I remember my last day of radiation.......it was the one and only time my husband and younger children came with me......and I rang the heck out of that bell. I threw the mask away (couldn't believe they asked me if I wanted to keep it) and walked out of there near tears.
I hope it goes well for Tom and be sure to keep an eye on him for depression.
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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#44098 10-26-2004 05:45 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Nicki and Tom,
Praise be to God! Get thru the next few weeks slowly with lots of naps and slow walking and things will get better!!! I am so happy for you both and may God give you strength as recovery begins!
Deb
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#44099 10-26-2004 10:43 PM | Joined: Aug 2004 Posts: 9 Member | | Member
Joined: Aug 2004 Posts: 9 | Dear Nicki and Tom,
Congrats on such a significant milestone!! I'm about 5 months post-radiation now, and even though I'm a dentist, and even though my CA center told me what a rough road it would likely be, it still was more difficult than I ever imagined. My recovery has been slower than I would like, but I am getting better. Plus, we're all different, and recover at different rates. I wish for Tom a speedy recovery! God bless you both.
David
Stage 1 lateral border of tongue in 1986 requiring L neck dissection, three surgeries later in Feb 2004 invasive SCC (poorly differentiated) L radical neck dissection followed by 37 treatments XRT
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#44100 10-27-2004 02:05 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Good morning, All my wonderful friends  I'm going to stay home with him today...he's asked me to, and I could use it, anyway. You all are so right in saying that feeling of 'doing nothing' kind of hits you. And, believe it or not, we had become attached to the health care team, and miss them!!! And this after one day???!! Of course, I WAS baking things for them all the time, and that was the only cooking exercises I'd been doing for a long time, so that might be my reason for feeling like I'm 'doing nothing!' We have to go out today for more blood work, but that won't be a big deal. Yesterday afternoon, about 7 people from his work came by and we had a short business meeting....brought Tom up to speed on several projects, the forecast for the next quarter, etc, etc. I did most of Tom's talking; he's getting good at sign language, however! It was a GREAT meeting and surely did a lot to lift Tom's outlook. Thankfully, even without Tom at work (or perhaps BECAUSE he wasn't there! ), this looks to be the best year the company has ever had.....God is good! Tom and I BOTH agree, Ed and Kirk, that we will listen to the surgeon, but that the removal of the offending tissue seems like the right thing to do......... I'm already anxious about the scan and I don't even know the date!! Love you Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#44101 10-28-2004 10:07 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 | Nicki, If you feel you need to keep baking to maintain your routine, I can always give you an address to send them to. I am only offering this as you slowly wean yourself from this routine you have become accustomed to.  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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#44102 10-28-2004 12:34 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Ed, I would be honored to bake something for you. Cooking is one of my passions - and you can imagine how bored I've become with having anyone to eat dinner with me  I think you all could qualify as a health-care clinic! Everything you've said has come true....I'm the one becoming depressed....Tom at this point is just BORED....... I'm SO missing hugs, kisses and cuddles (I'm a real 'feeler,' personality-wise) and all I want is to have MY TOM back the way he was, so we can be back the way WE were! I know it is selfish, but I can't keep back the 'sad.' Guess I'll go scramble an egg. How exciting... Hope everyone has a great night (or DAY, as the case may be!) XO Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#44103 11-04-2004 08:09 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Congrats Tom and Nicki!!!! Glad you guys are across that finish line!!! Keep up the good work...
I'm back living in North Carolina by the way... Glad to be back east
Eric
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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#44104 11-04-2004 09:58 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Hi, Eric - and the rest of my favorite team! It is a dreary wet day here in Virginia - wish I could have stayed home. Tom is doing much better , however, so I'm a little less apprehensive about leaving him home alone. He does want me around all the time, and I do believe that is a sign of him still being very much 'on-edge' about the outcome of this thing. He is taking in generally 6 cans of Jevity a day, along with his coumadin and the laxative stuff they prescribed. He's on 75 mcg of the Duragesic patch and except for occasional break-through, he's doing fine with that. I don't like that it makes him 'twitch' all day long, asleep or awake. Heavy sigh......instant gratification is not part of this program, I can surely see. Right now I can't even look at pictures of him 'B.C.' I get too sad. The radiation seems to have done a number on the hair at the nape of his neck as well as his beard. Don't know quite how we'll be able to work around that later on........... Eric, we are going to Emerald Isle, NC for a week coming up soon. Are you anywhere near I95? Everyone - please take care of yourselves. Don't know if I mentioned this, but I had a scare with a recall mammogram last week. Thankfully, I've been given a clean bill! God is good. Love, Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#44105 11-04-2004 05:30 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Nicki,
I have a picture of my mom with my baby girl on my desk right before she started radiation and chemo and I would love to see her look like that again...I look at that picture everyday and its hard to believe that it was less than a year ago that she looked like that. I think it just takes time. Its one of the hardest things for me. I keep expecting her to look like her old self but gaining weight seems to be difficult for her and she just doesn't look as healthy as before. I'm sure it gets better. Tom will start to feel better gradually and soon you won't even remember how hard this time has been for you both.
My prayers are with you!
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#44106 11-05-2004 03:08 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Guys, just wanted to chime in, I think Oral Cancer is one of the cruelest in so much as it takes away from your physical appearance and leaves you with scars that EVERYONE can see! Just had my 8 week with oral surgeon, he said he will do a revision of my trach scar and possibly something with the scar on my neck. That one bothers me the most cuz it looks like a chunk of my neck is missing. I have gained back all of my weight and some, SMILE!! I don't want to sound vain cuz I am truly grateful to be alive and I know that God still has a plan for my life, but I do wish I looked my old self again...Take Care and Have a great day everbody!! Love, Carol
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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