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#108960 12-18-2009 02:00 PM
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i am feeling a little blue today. it is the holiday season, with everyone asking if we have gotten our shopping done yet. we have yet to shop, money is super tight. our kids are all adults but one (17), so they understand...at least they say they do.

he is starting to get "sunburn" on his face and neck. our bathroom countertop looks like a pharmacy. he had a reaction today from the amifostine shot he gets with radiation-fever and swelling in the shot site, an instant bruise and a rash. his poor arms are all bruised from the shots.
he cried today coming from the MO saying he was just tired of feeling this way. broke my heart. i think it has alot with not being able to "do" christmas. weve never been not able to have a big christmas.

although we talked about just skipping christmas this year, i have decided today to do one small gift per child (we have 6 kids, so that adds up fast). i think that no gifts would just put him into a depression. he already feels like a failure for not being able to help us financially. i tell him it isnt his fault, that he didnt have control over this, so to stop blaming himself.

this may sound strange but it is breaking my heart, that it is breaking his heart of the situation we are in. i know the rads tires him out but he is just staying in bed.

thanks for letting me vent...
teresa


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
homershoney #108962 12-18-2009 02:56 PM
Joined: Oct 2007
Posts: 104
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Teresa my heart goes out to you as you and your family struggle to get through the holiday season without "doing" Christmas in your usual tradition. I know how difficult that is, I was there 2 years ago. Tell your hubby his gift to his family will be his presence and making it through treatment to recovery. Vent as you need to everyone here understands and supports you.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
wallyswife #108964 12-18-2009 03:07 PM
Joined: Sep 2009
Posts: 618
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Teresa,

I understand. I don't want to do much but I have a twelve year old at home and he needs a christmas. I did the tree and just got done doing a few lights outside in the cold.

It's still going to be a bare bones christmas. My inlaws want to see me in Wisconsin and my family has invited us to the other side of Michigan. I dread the travel but may just go along. My wife wants to spend what time she can with her father who is not doing all that well so I understand. It's all just so tiring.

I realy just want to stay at home and take it easy this year.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #108990 12-19-2009 06:21 AM
Joined: Nov 2009
Posts: 396
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i went out last nite dropped off his prescriptions and bought a few gifts while i waited for his medicine.
i came home with such anxiety, just knowing he was going to be upset.
he was actually happy about it! he was instantly in better spirits. so i know this was weighing heavy on him.

another thing...yesterday when he went to weigh in, he left his coat on this time and had weighed the same as last week. the nurse was glad that his weight was holding. when he handed me his coat to get his shot, i noticed 2 full water bottles, one in each of his pockets. i did not make a big stink about it in front of the medical team, but made him get back on the scale when the nurse was out of the room. he had lost 3 lbs in one week.
i told him next week, no coat. should i be concerned about the fact that he decieved the nurse? it wasnt a mistake on his part either, since he gave me a little smirk when i found the water.

thank u all,
teresa


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
homershoney #108994 12-19-2009 08:06 AM
Joined: Jun 2007
Posts: 718
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I don't think what he did on the scale is unusual. My husband weighted down his pockets and wore heavier and heavier clothing as he progressed through treatment. I tracked his morning weight at home so I always had an accurate gauge of where he was at.

When I told the nurse about it while he was in treatment, she didn't seem at all surprised.

Glad things are looking up a little for Xmas.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
mhupe #108995 12-19-2009 09:13 AM
Joined: Sep 2009
Posts: 618
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Posts: 618
Teresa,

A few months ago we the board was full of stories from the guys here about wearing coats, heavy boots and whatever. One guy even put lead wieghts in his pockets. Apparently its a guy thing.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
mhupe #108997 12-19-2009 09:18 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Teresa, whats most important is everyone being together for Christmas. You are blessed to have a large family.

As far as the scale thing. I would wear progressively heavier clothes and shoes as my treatments went on. Every week I lost weight. It got to the point where my nurse would make me do a feeding everyday when I came for rad. She even started weighing me daily. I didnt realize til it was over how much she was helping me keep my nutrition up.

Best of luck with the continuing treatments.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #109007 12-19-2009 03:34 PM
Joined: May 2009
Posts: 1,412
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Teresa, I would not worry about 3 pounds. I have been losing anywhere from 5 to 10 pounds a week. I so understand the Christmas blues. I have them and it is really hard with small children. They do lift my spirits some. Anyway, I am glad you were able to get a few little something for Christmas and it helped your husband. Just know you are not alone and neither is he.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #109022 12-19-2009 06:00 PM
Joined: Mar 2008
Posts: 3,082
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Posts: 3,082
Teresa

Oh yeah, I am proud and unrepentant about tricking my medical team out of their paranoid focus on my weight before Cancer TX.
I wore heavy boots, blackberry and even lead weights because I knew I had been perfectly healthy at 125 pounds when I ran marathons. Of course I had ballooned up as I got older but just like my Thryoid levels, what is important is that I get back to what I was when I was healthy, not diseased. So relax, this show that your husband wants to live and has a fighting spirit. That translates into him being with you longer.
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #109028 12-19-2009 07:02 PM
Joined: Nov 2009
Posts: 396
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when i read ur comments on how yall weighed urselves down, it made me laugh. thank u for that, i needed a little chuckle! i wasnt too worried about the 3 lbs, but i dont want him to decieve the docs like that. he had lost 30 lbs during chemo, and in trying to "fatten him up for radiation, i only mananaged to fatten myself up :(, he gained 10lbs back, i retained the other 20.

still trying to put weight on him and now i have to go on a diet...

we are looking forward to having our family home for christmas! we only have one at home, the others are on their own. with the exception of one in the navy, they are all within 3 hours of us. we do feel blessed to have them!!

thanks again for the support!
teresa


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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