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#101044 08-07-2009 06:18 AM
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Hi,

T is nearing his one year anniversary of dx, with a PET scheduled for the 27th of this month. I have noticed that he is not his usual self...he got quite a buzz on last nite with brew. I have spoken to him and asked him what is going on and he says everything is fine...nothing new.

He goes to work every day and is eating very well. He looks better than he has in a very long time...I cut off his curls last week and with the exception of his ND scar and the hole in his neck, you would be surprised to learn that he went through hell just a short time ago. His muscles are coming back and his stamina increases every day.

Any insight into how it feels to be in this position? Sure, I feel the anniversary and the PET anxiety, but I have no idea of how this feels.

Thanks for some input.


Donna

Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
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Each of us can be different because we all are wired differently but after being told we have cancer we all fear any tests that may tell us we have cancer. While I thought I appeared normal, it was definitely in my mental background every test until I got the results. I am 3 years out and I was just told that I need to have a chest X ray every year for the rest of my life. Even now I dread having to do that which means to me that at a minimum I'm thinking about it behind the scenes.

He does need to be reminded about the alcohol's damaging affect in our oral cavity as he has already shown a predisposition to this cancer. Eliminating all potential oral irritations should be a daily consideration.


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.
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Hi Donna, I know how it feels being the caregiver and experiencing exactly what you describe.
Intensity with a capital I.
Stand by, there may be a lot of intense ups, as well as downs, ahead.
I hope it will even out for you, as it eventually did for my husband.

Ginny



Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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Donna,
I am at the 10 year mark and still get up tight before each checkup. Wednesday was my day at Johns Hopkins and upon arrival after a 2 and a half hour drive my blood pressure was up to 170/84 when my normal is abot 110/65 or some such. So my only suggestion is for you to recognize that there will be weeks like this. I find myself "bighting back" at my wife. She now understands to a degree and stays "off my back" about it. I wish you the best. Cancer sucks for all.
Vernon

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Hi Donna,

I go for follow ups every 2 months and usually my mom goes with me b/c my husband is working. I am usually petrified the day of my appoinment....upset stomach and all those good things. I'm moody and annoyed easily also ( I'm a real peach) luckily my mom goes with me so she doesn't take any of this personally:) It is so stressful because I just don't know what the doc is going to say. Over the 2 years since I was diagnosed I have had 4 surgeries and every other time but 1 there is something "we are going to watch" I wish I could tell you this would get easier but I don't see it getting easier for me any time soon. Just don't take anything personal and be there for him. That is what he will need.

Keep us posted with the PET results....man I hate waiting for results.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Donna, I would imagine that this is your hubbys way of dealing with it. I have noone to complain to or bitch at, I don't drink or smoke so I take the frustrations out on my yards, front and rear. I really have never feared of going to any of the Drs because I know it is a necessity to do it. I look at things differently than most people do and face rhem without any what IFS. Just stick by your man and one day, he might realize it is for his own good to see the Drs as scheduled and he will be happy to see them and hope for some good news.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Jim,

My yard will always be there for your frustrations but be careful in my fenced in back yard as it is looking like a bomb field with all the holes Buddy has dug. I used to take great pride in the way my yard looked but it's impossible to keep up with a digger. Revenge is sweet though as I quietly smile when I hear my wife scream just after I let dirty, filthy, muddy Buddy and Lamont stampede into the house. Oops lol


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.
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LOL David thanks for letting me use your yard. It might not look batter when I finish, but for sure it will be different.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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"OCF Canuck"
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I think anniversaries are like VIVID memories of a bad car wreck. Pour one for me too (JUST KIDDING!!)

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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