#61947 10-10-2007 08:15 PM | Joined: Dec 2006 Posts: 21 Member | OP  Member
Joined: Dec 2006 Posts: 21 | Haven't posted in quite awhile, but I just wanted to get it out there that I am now post treatment and it's getting better every day!!!!
Last radiation treatment was on 8-7-07. I had my PEG removed just 6 weeks later. I actually cried when I got my first sip of water down without choking!! I knew it wouldn't be long till that nasty ass PEG hit the road.
That thing was so much trouble. I never could get used to the feedings. Constant nausea and vomiting. I lost 50 lbs!! I'm looking pretty good, though. My doc called me "slightly obese" just before my surgery in March. Pretty hot now, though!! Just imagine if I had opted to not get a PEG! I'd be too hot to handle (except for all these scars on my face and neck)!
I did spend a couple of days in the hospital for dehydration, too. I highly suggest this if you get to feeling a bit lonely at home. Damn nurses won't leave you alone for two minutes. They gotta check this, or adjust that, or fluff this... Oy Vay!! I won't even get into the guy in the other bed. He didn't sound that sick to me. Send his crabby ass home, already. He's been threatening to leave for 5 hours. Let him go!
As for the radiation treatments, I can't say enough good things about those ladies there!! What a fantastic group. They rubbed my back everytime I threw up all over the place and never complained once. At least not while I was around. They also had to endure my "take my mind off things" music for 30 days. Same songs, day after day, after day, after day... Even I can't stand Michael Buble anymore!!! One of them even asked to borrow one of the songs for her sister's wedding. I know she was full of crap. They do or say anything to make you feel better. So Sweet!!
Now I'm home recuperating. Eating is a chore. I used to love to eat (hence the slightly obese comment). Now I dread meal time. By the time I make it through breakfast, it's time to start on lunch. One bite of food, three gulps of water. I have to drink so much to get the food down that I'm full before I really had anything to eat.
Oh yeah, this dry mouth thing, pain in the ass. I never was a big water drinker before all of this. Now? Thank heaven it's free. I think I spend more time pissing than I do breathing!! That includes about four trips out of bed every night. My kidneys are exhausted.
Speaking of exhaustion. I was doing pretty good about three weeks after I finished treatment, but all of a sudden, the last couple of weeks, I feel completely drained again. I spend alot of time sitting on the couch, if I'm not in bed (sometimes twelve hours a night). That's minus the bathroom trips, of course! All things in time, I guess.
Anyway, that's just some of what I've been going through. I'll fill you in on more later. And believe me there is more. THE HAIR LOSS, THE MUCUS, THE DEPRESSION, THE STARES, THE INCESSANT SYMPATHY, THE DIZZY SPELLS... Who new cancer was so much fun.
Tongue cancer diagnosed 12/01. Tumor removed. No chemo, no radiation. Early stage 3 SCC of the tongue recurrance 12/06, well differentiated. Hemiglossectomy, free flap, neck dissection 3/26/07. IMRT Tx finished 8-7-07(30 Tx's). No chemo.
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#61948 10-10-2007 09:29 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | hey Keith
great news and sounds like all is on schedule.
love your attitude its just spot on.
all the best love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#61949 10-10-2007 11:27 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh Keith,
What a sense of humour!
Your poat cheered me up and I'm sure it will for others too!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#61950 10-11-2007 01:55 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Great post Keith!!
Sums it all up VERY well !
Been there, dun that, bought the TEE-Shirt
KC
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | |
#61951 10-11-2007 04:28 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Keith,
Thanks for sharing! I can't wait to print this for my mom, she is having such a rough time lately. Maybe reading your hilarious post will give her some hope and laughter.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#61952 10-11-2007 11:41 AM | Joined: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Keith-
Your post cracked me up. Just so you know, 2 months out of my radiation I sat down to eat a bowl of canned chicken noodle soup. My husband left to go on an errand and 45 minutes later he came back and I was still eating it.
Today (6 months later), I stopped at Taco Bell and had a bean burrito and regular taco, and drank a soda(no ice, slightly flat) in small sips to help swallow it. Delicious. It gets so much better.
Melissa
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
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#61953 10-12-2007 08:14 AM | Joined: Dec 2006 Posts: 21 Member | | OP Member
Joined: Dec 2006 Posts: 21 | thanks Mel_in_CA.
I am so looking forward to someday eating near normal again. I'm just afraid when I can I will put on too much weight. I LOVE TO EAT!!
Tongue cancer diagnosed 12/01. Tumor removed. No chemo, no radiation. Early stage 3 SCC of the tongue recurrance 12/06, well differentiated. Hemiglossectomy, free flap, neck dissection 3/26/07. IMRT Tx finished 8-7-07(30 Tx's). No chemo.
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#61954 10-12-2007 06:59 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Keith,
Oh did that bring back some memories! Especially the music - I burned my own CD and listened to it every single day in RT. Must have driven them nuts. I knew exactly how much time I had left on the table by what part of what song was playing. I would crank it so loud they could hear it through the lead lined doors ha ha!
I had nightmares about puking in the mask (and subsequently choking on my own vomit - but hey I'd have some great company, Janis, Jimi, Keith Richards, Jim Morrison, etc.) but it never happened. I was pretty sick from the chemo for a long time however. You're right on about the RT techs they were great. I still stop in to visit them from time to time to let them know that some people actually live through this (My tech confided in me that they felt terrible about how beat up people got from the radiation).
I never got the PEG - went AMA and lost 60 lbs (screw the PEG). Put 30 back on and stopped there - perfect weight (BMI). It forced me to eat and drink orally and I think that helped me transition to real food much faster - but I had to take huge amounts of narcotics to pull it off - not for the weak or faint of heart ;-)
I had to be rehydrated too but after one trip to the ER figured out I can have it done faster and far more comfortable in the infusion unit (with real oncology nurses (they're the best).
Great post! Tells it like it is.
It'll get better - I promise.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#61955 10-29-2007 06:12 AM | Joined: Feb 2007 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2007 Posts: 34 | I never had a peg tube but did lose 60lbs and let me tell everyone asks how I lost the weight but no one wants to join the program... I'm glad that you are feeling better. And I'm glad that we had the weight to lose. | | |
#61956 10-29-2007 12:43 PM | Joined: Jun 2005 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2005 Posts: 49 | Keith, I wish I could have read this post 3 years ago. If it made me laugh this hard 3 years out I am positive it would have done a world of wonders for me then. Thanks for making me see the humor in it.
When I was bolted down for the 1st time, I was afraid the "zap" of radiation hurt. No one told me. You can imagine how hard they laughed behind my back when I began asking those type of ?'s. Get this one. I was 6 months pregnant and a lead shield had to be built around my belly every time I took radiation . One day, the techs had it almost completely in place and I began throwing up. They had to lift it up quickly and imagine a young man trying to hold onto the shield WITHOUT taking any lead pieces out! (I think the table held 9-12 lead shields.) Bless him for trying to save me from choking on my vomit.
Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker
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