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#121950 09-19-2010 06:58 PM
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It's been an incredibly long week. Jim entered the hospital last Monday due to his breathing problems, mass on the back of his head and dehydration. Without going into a bunch of details that lots of people on this site are all too familiar with, when comparing the scans that he did on Friday and then Monday night after entering the hospital, there had been significant change. The tumor in his long had grown over his bronchial tube and caused his left lung to collapse. Dr.'s were amazed that he was breathing at all - he switched over to using his right lung and laboring to breathe. The mass on his head had to be operated on as the E.R. hadn't opened it up enough to drain it adequately. Turns out it is the dreaded MRSA bacteria and was tunneling through his head and neck. So, I brought him home Friday night and then shit broke loose - Hospice kept calling me and wanting to know when was I going to be home as they needed to come and make an assessment of him, drop off oxygen, take vitals...Once we got home the hospice nurse came by and got us all set up...then the wound care began, so with many more calls and the right hand not knowing what the left was doing, we finally got things going...then Jim decided to get up out of bed about 3:30 am and before I could get to him, he fell....then I had to call the Hospice nurse tell her what happened and finally hung up on her because I got tired of answering her silly questions...told her if she wanted to check him out, then she knew where we were....Rallied friends and family the next day and as of tonight, have things running smoother, I even give him his vencomyacin treatment thru his port....so I think he's getting a little stronger - we go to radiation tomorrow to shrink the tumor and give him more breathing abilities....Jim saw the Challenger commercial today during the Cowboys game and got weepy eyed----I'll deal with that next week. I'm off of work next week and then will return the following week...I hate it, too...but need to keep my job so that I can keep insurance going. Liz, if you read this, thank you for sending me pictures of Rob - - - it really helped me handle Jim's bandages around his neck and head as they are the same. All I could think of was thank God you sent these as I wouldn't have done as well as I did. Today is the first day that I put on make up since last Monday and I ALWAYS WEAR MAKEUP!!! Cancer won't rob that from me as I don't want Jim seeing his wife, not look her best even though she has slept about 10 hrs. since last Monday.

Thanks everyone for being there for me....I will post more as time allows.

Hugs,
Paula


Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
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Paula, I will keep you and Jim in my prayers.


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
Joined: Jan 2009
Posts: 476
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Wow Paula! I am so sorry things have spiraled downhill so fast. I wish there was something I could say to make you feel a little bit better but I know there isn't. Sending you and Jim lots of prayers and lots of strength to you. Stay strong but take time to take care of you! Hugs, Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: May 2010
Posts: 135
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Paula, I'm so sorry that Jim (and you) are having such a hard time. Have had you in thoughts and prayers and was wondering how you were doing.

BIG HUG TO YA

D


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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I'm thinking of you both Paula. Know you are in my thoughts and prayers as you go down this path. Many hugs.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Adding my prayers to everyone else's, Paula, and hoping for things to go a little smoother for you and Jim. Wish I could be there to help in some way and to give you a big hug.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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You caregivers are something!!!!!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Sep 2009
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Paula, Ditto to everything said here. You and Jim are also in my thoughts as well. Sending you strong vibes of love. Thanks for the update, too.


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Aug 2005
Posts: 307
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Paula I just wanted you to know that you and Jim are in my prayers too.....you are one strong lady. God Bless you.

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
Shelley K #121971 09-20-2010 11:50 AM
Joined: May 2010
Posts: 37
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My thought's & prayer's are with you all!


Stage 1V scc of toncil 12/1/09
Peg in 01/18/10
35 rads 3 cisplatin
tx ended 03/02/10
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