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#35645 12-06-2007 03:33 AM
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EzJim Offline OP
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It seems each morning I wake up being starved for air into my lungs. It's as if an elephant was sitting on my throat and cutting off the air supply. This morning was the worst yet, I really didn't think I was going to make it. Is this the normal?? What fun this OC is for all of us. Shoveling snow yesterday in the fridgid temps and wonder if that could be why it is so bad today???


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
#35646 12-06-2007 06:19 PM
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Duh! Jim, DON'T do that again!!! You're been through hell, and survived...what are you trying to do? commit suicide???

Get yourself checked, just to make sure! Just DO IT!

Lois


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#35647 12-06-2007 07:18 PM
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I agree jim-get it checked!!!

ps great to see the lady is back ,told you it was just a question of space for a week or two.

enjoy christmas

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.
#35648 12-07-2007 01:13 AM
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EzJim Offline OP
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She isn't back , just visited with her daughter, I thnk it's over but I can live with that.. It's snowing right now and i have to get out for a PetScan. LOL any volunteers? Hope you have a great day.


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
#35649 12-07-2007 02:42 PM
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Jim: Hope you're enjoying the snow! It's supposed to be in the 70's here in Carolina for the next few days...

Keep us posted!

Lois & Buzz


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#35650 12-07-2007 04:21 PM
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EzJim Offline OP
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OK Lois, rub in the sunshine LOL I'm jealous. Had the Pet Scan today. Have a great day in that sunshine !!!! Barb has a sister in Carolina..


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
#35651 12-08-2007 02:39 PM
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I saw her for awhile last nite at her aunts and today fo awhile.. One of you tell her to get her butt back here with me will ya? LOL 5 yrs and then zippo gone


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
#35652 12-08-2007 07:26 PM
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JIM talk to her!!!! Tell her whats in your heart,tell her you need her(which you do even if you wont admit it).Cancer has taken enough from you already dont let it destroy this too. cancer is a sneaky beast as you know so dont put it off,do it now.Flowers,candy,begging ,whatever it takes let her know in real words how much you care and the rest will follow i am sure.
We all need love Jim and she has been through so much with you already.
I would give both my eyes to hear Robins voice and touch his hand just for a moment,dont blow it Jim while you still have the chance.

You may be a tough old boy but that doesm't mean you cant pull on your romantic softie hat and win her back.Its the time of year to be with those you love,so pull your finger out.

love and hugs 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.
#35653 12-09-2007 01:55 AM
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Jim,
HAve you thought of writing to her?
That way you can express your appreciation of her, amend it as you go along etc. to be sure you're saying what you really need to say and how you feel about her>
I hope you get to see her again soon
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!
#35654 12-09-2007 02:07 AM
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First of all, Jim - did you get the PET Scan?? If not, DO IT!
Second - Do stay away from shoveling snow for a while. If you put it off long enough, it will melt. (I know, I used to be a northerner)
And regarding your lady, I definitely agree with Liz and Brenda. "Faint heart never won fair lady". Do whatever to get some of those precious moments back.


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.)



#35655 12-09-2007 03:05 AM
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EzJim Offline OP
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Anne, i got the PetScan Friday and they made me 2 CD to send to Columbus I will mail them Monday and wait for the results. LOL i am no faint heart and have tried everything to no avail,, I'll lewt you know how the scan comes out and have a great day.


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
#35656 12-09-2007 05:09 AM
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Jim,

I woke up several times one night with no air. Doc ordered a sleep study and what was happening was my tongue was falling to back of my throat and cutting air off. I just got a CPAP machine that has a mask the goes over my nose and it forces air down my windpipe keeping my tongue from cutting the air off. Its the same machine that is prescribed for sleep apnea.

Billy


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
#35657 12-09-2007 06:40 AM
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EzJim Offline OP
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Billy...thank you for the info. That was the furtherest thing from my mind as to what causes it.. Have great a Holiday with your family...Jim


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
#35658 12-09-2007 07:18 AM
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FYI, Jim, I was diagnosed with sleep apnea about 4 years ago, so I use CPAP every night. I have to be careful to use the humidifier with it, though, or my mouth and throat get really dry, especially now that it is winter (well, not officially, I know, but I shoveled 5 inches of snow off the driveway this week, so it's winter!).

You might talk to your doctor about a referral to a sleep center for evaluation. Lots of fun, they put about 20 wires around your head and chest, a few straps, and tell you to sleep well!

Jeff


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
#35659 12-09-2007 08:10 AM
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Jim,
I agree with the ladies--
stay away from the shovel
let barb know how you feel--but don't suffocate her. you know her, know her space limits....you can find a way...


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.
#35660 12-09-2007 07:02 PM
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Jim,

As long as you have put this topic out there, it seems like you miss Barb a ton. Here's a questions for you, do you miss Barb or do you miss the companionship of having that someone special in your life.

In the beginning, when you were both posting it seemed like you had an amazing love, concern and compassion for one another. And I think in one post you expressed reluctance to marry even though that is something she expressed a desire in.

Do you think this is all fall out from oral cancer. Or, do you love her and are your ready to propose? We're just a bunch of chicks here wanting to read about a movie type happy ending.

However, loneliness shouldn't be the driving factor in getting her back. Undying love...that would be a more appropriate reason.

I agree with Donna, don't suffocate Barb. Maybe the time apart will be good. Have you thought of starting over with dating and letting her get to know the new you.

I don't think you can go through this type of experience and not realize changes in your life...and, the changes, they are not all bad.

Stop shoveling your snow. Hire a service or ask a neighbor or relative.

Wishing you the best,


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.
#35661 12-10-2007 12:47 AM
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First - you say you've tried everything to no avail and so I am assuming this means proposing as well. If that is the case, then how about this non-original thought: "If you cannot be near the one you love, then love the one you are near". So, are they any others nearby?

Second - you can't make someone feel the way they don't want to or are unable to feel. That is too much responsbility to place on another person. You are responsible for your own happiness. If your happiness includes occasional time with your lady, then enjoy that for all it's worth without worrying about what more there could be. Love is like ice cream. . . . enjoy it now! Don't worry about whether you'll ever have another dish.


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.)



#35662 12-10-2007 02:39 AM
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EzJim Offline OP
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This is for all my friends,, I have proposed ,I have almost kissed her rear, given her space, shed tears with her, and things I said I would never do to keep someone. I believed that just walk away and find another. Here is a couple of examples of how things are going..Yesterday morning in church she came and sat with me. We talked about the church Christmas dinner , which is this Saturday. I asked her if I should pay for her and Her Daughter Samatha. I wrote the check and turned it in. Then I was told she might or might not sit with me at the dinner. Hmmmm, not a good thing to say. I asked her how, when someone pays for you to go somewhere, can you not possibly sit with them. This was at the evening service. I have tried everything that i can possibly think of to convince her that after 5 yrs, there has to be some feelings for each other. I even wrote an oathe as to how I would treat her . She has said things about me that noone should say about another person and keeps adding to them to try to convince others as to how bad a guy I am. I proved her wrong on most of it but there is noway she will appologize , say I'm sorry, or I was wrong. If she were a man her teeth would have relocated to back of her head. I even overlook that and forgave her. It seems she will say anything to make her feel she is justifying her leaving. As for the dating, I have invited her to go out for dinner or where ever she wanted. Why does she try to make me look bad to her friends and family? Self justification? My daughter, a critical care nurse and my 300 lb son that competes in the world's strongest man competition from time to time, wanted to come out here and strighten things out. I told them to forget it and not to even think about it. I don't want to cause Barb any embarassement in the town she was raised. That's it in a nutshell. As for other ladies, I have had no problem attracting them , but I am just not interested in anyone else. Thank you all for the advice and I wish I knew why I can still have feelings for her. Jim


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
#35663 12-10-2007 02:44 AM
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Just a post script,, When we 1st got together, I promised that I would always be her for her . I have never broken a promise . A promise to her daughter is what created this mess anyway. I had to break that promise to try and clear things up between us.


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
#35664 12-10-2007 02:00 PM
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Jeff, I had to move 7 inches of that white stuff. I don't envy you for doing the same .Be careful with your health and take it easy. I'm hyper and have to be busy doing something. That something made me hurt big time. I had another PetScan Friday
and mailed the CDs they made me this morning..Dr Viada is worried about my lungs which encourages me a lot.. LOL


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
#35665 12-10-2007 04:16 PM
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....while we SWELTERED in the 70's today....lol...temps set a new record...


Thinking of you.....keep us posted!


Lois & Buzz in NC


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#35666 12-11-2007 05:17 AM
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Lois, if you keep with this warm sunshine talk, you are liable yo have a visitor. LOL. It's miserabe in the Ohio Valley. We had 2 days of snow, 7 inches the 1st day and 2 the next. Today is cool damp and foggy. Man am I jealous . Thinking of you and Buzz and wishing Barb was here to snuggle with me. Still hoping tho. Have a great day... Old Cold Jim


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
#35667 12-11-2007 07:40 AM
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hi all ,, i hope you all are doing well concidering...i know you all are hoping for that fairy tale ending to a long story.. and yes jim has tried everything.. and like some of you said DONT SMOTHER HER.. well you know how that goes.. when your a person not used to the things he is offering me now then YES it is smothering...there has been alot said and done the last couple of months in this relationship that im sure hasnt been brought to any ones attn. but i guess some things are better left unsaid... as for jims cancer i really dont blame this brake up on that.. as you all know i was there for him and with him thru it.. and i also was told bye his kids there was no other one they would rather have for a step mother then me..but it seems when jim was going thru the worst they would call and and talk and all that but do you know how many times i seen or heard from them from the time he came home and the time i moved out? i need not say...i moved out from jims once before this and was gone 6 mo. but went back because he said things would change and get better.. well that lasted a year.. well maybe not that long but i had told him if things were ever to go bad again then i would leave and never look back... but what i dont get is why he has to blame it all on the cancer..im sure when you dont feel good you can be grouchy but not to an extent as this has turned to..when he had the surgery and all that i was very much in love with him and was hoping things would turn out for the good with his health and all of that and for us too but thats not the case. he expressed at different time that he didnt want to get married and not only to me did he say that.. it hurt ... and i dont feel i need to be where im not wanted.. but only for that house guest... so its better that i move on and wish him the best with his health ,, and i wish you all the best with yours also..oh and no im not saying im perfect in any way lord knows im not and im sure i have done wrong but i do think this is for the best


Barb
#35668 12-11-2007 09:28 AM
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Barb--how brave of you to write!
You are a person in your own right and although we all hope for happy endings, sometimes the happy endings come different ways--splitting being one of them.
I don't think there's a person here, including Jim, who hasn't been amazed at your support of him through surgery etc.
And oh boy, do I, and others I won't mention by name , understand your upset about the apparent lack of concern by others who were 'there' in emergency times, but never seemed to stay the course.
Thank you Barb for thinking of the health of the rest of us, and as for you and Jim, as separate individuals who were once together, and know a lot about each other, only you 2 know what the future can/might hold, together or apart.

Cancer is CRAP, it does change us, but as I've said before to lady partners on this board, it's never an excuse for abuse of any description, in any form. Anything other than that can either be worked through, or lead to the realisation that the relationship wasn't right BEFORE cancer.
Bless you Barb,

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!
#35669 12-11-2007 01:13 PM
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I am glad I came to this site tonight. I respect Barb and her feelings. I did get too read how it is for sure, because things were not too bad this morning when we talked. I had some hope then. As for my kids, Barb is right,they did come to the hospital for the surgery and to see me after. When I came home, they were just like Casper the friendly ghost.LOL. I have taken Barb to many Drs in cities not very near us for surgeries and office visits and would take her again where ever it was. I took her kids to an orthodontist that was 90 miles from home many times too.Some of these trips were before we even divorced our spouses. Have to tell you this. we were at Sam's club 0ne day and who do we see but my wife. LOL We went out the door and Barb asked me what I was going to do. I said we are going back in and then we went up to my wife and I introduced them. Heck, we even stayed at a motel 2 times when we were away from home
for one surgery she had, she told her husband I was sleeping on the floor the 1st time and the 2nd told him I was sleeping on the couch. Oh my we had a LOT of good times. He was dumb enough to believe her. LOL No wonder I love her so much.We had way more good than bad times in our 5 yrs. She has her faults like all of us. She is like a Pitbull when she gets angry and can talk on the phone for hours. Now that upset me. I guess if this is what she wants, I can't stop it, but will keep trying. It will be the hardest thing I ever was forced to do. I have never figured out what I did that was so wrong to make this happen, but I am man enough not to say it isn't all true. I gave her and her daughter anything they ask for or wanted and probaly still would. I like to make people happy and messed this relationship up from what she says. She sure wasn't an angel either, but to me it makes no differnce.. Any thanks fo letting me vent and I will love Barb forever for being there for me. Too bad she doesn't feel that way for my being there for her. OK,, I know all, i have said enough. LOL I hope she sits with me at the Church Christams dinner after I bought our tickets. GRRRRRRRR that would be upsetting, even for me if she didn't. nite all


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
#35670 12-11-2007 01:26 PM
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Barb has never been just a houseguest in this house. We bought it for us as soon as we saw it.This is and was our home. Without Barb here, I'll have to sell it to get rid of having to be here without her. My main reason for not wanting to get married was the age difference, but this OC has not only changed my mind about marrying her but my whole outlook on life. My youngest son didn't want me to get married , but I told him that if Barb would say yes, we would get married in a minute. Really Dad? I said definetly for sure Ryan. He said I'm glad.I had to unload again all . I feel terrible after reading Barb's later all


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
#35671 12-11-2007 06:47 PM
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Lois, I just have to give you some good news. It was 64 here today and at midnight it's still in the 60S.. see we get some nice weather at times. LOL


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
#35672 12-12-2007 05:53 AM
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Lois and Buzz, I'm gald for yesterday , because when I got up at 7 this morning it was back to normal..38 and looking bad today.


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
#35673 12-12-2007 08:28 AM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
This is for all the people that come here and read. I have no one to talk with and seeing as we are all in this together, I thought I could vent. I hope I didn't upset anyone by babbling on and on. I hope you all forgive me for being unthinking. This is for OC not Ann Landers fans. Sorry all. Jim


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
#35674 12-12-2007 05:53 PM
Joined: Jun 2007
Posts: 510
"Above & Beyond" Member (300+ posts)
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"Above & Beyond" Member (300+ posts)

Joined: Jun 2007
Posts: 510
Babble on, Jim...whatever it takes to make you feel a little better...Temps near 80 today, but it's going to be cold and rainy by the weekend! I can't believe what those folks in Missouri are being subjected to! Makes me GLAD to live in the SOUTH!

Lois


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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