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Joined: Feb 2005
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You are quite welcome. And if you come here to Houston, let me know. I would be happy to lend any in person encouragement for you both!

All the Best!
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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Rebecca, [I'll probably get flak for this] just want you to know- if you all go to Houston and should you be so inclined, Cindy makes a mean Margarita and is a good listener. Stay strong! Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Cindy/ Jam: MD Anderson called Monday & told us to be there Tuesday for evaluation (blood work, chest films, ct scan, surgical, radiology, speech path consults). Surgeon visually defined as stage IV. Radiologists were undecided as to T3 or T4 and also discussed N factor but I don't have my notes w/me right now. At this point, metastasis has not been discussed one way or the other.

The surgeon said she'd call today or Monday w/surgery date (and we'd assumed she'd let us know about metastasis then), but the primary coordinator called last night w/no metastasis news. Hoping the surgeon will still call but don't can't be sure and, if she doesn't, he's not going to hunt down the info (being of the mindset, "the doctors will tell me what they want me to know").

Surgery is currently scheduled for Nov.1. Doc admits it


CG 2 fianc
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Rebecca, well girl, hang on to your hat because this is going to be a rough ride. What they are proposing will not be a walk in the park. If you plan to be with him during this, you need to be prepared for a large amount of time dedicated to this. If you can't do it, he will need some "up close and personal" help after his surgery and later.Please ask whatever questions are spinning in your head now and we will try to answer them.
It's doable[I know because I've done it} but it isn't easy and if you are to be the caregiver, you will need some preparation. Keep talking-we want to help you. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Amy - Didn't check the board over the weekend and am too nervous to post much today. Our MD Anderson surgeon was supposed to have called to schedule surgery today, but since coordinator already did that last week, assume surgeon will have called w/results of chest films & CT scan. It's late afternoon and I haven't heard from Chuck though. . . and I'm scared to call & ask what she said (or if she called even). Hope I'm just being paranoid but over the last 3 wks he's developed an increasing chronic little cough that doesn't sound good at all. Will keep in touch.
R--


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Hang in there, Rebecca. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Dear Cindy,

Your account of your husband's journey is one of the best posts I've ever read. I believe you did save your husband's life. I wish my Uncle had taken over the decisions for my Aunt's care long ago. Her life would be different now but instead, she allowed her depression, stubborness and fear to make foolish decisions for her. She's getting worse with every passing week. It won't be long until she can't get up from that bed that she spends 24 hrs. a day sleeping in.

You made the difference. An assertive spouse CAN make all the difference in the world! YOU are proof! Never diminish your role in this. I know how zonked I feel after speaking to my Uncle trying to give him support and a sense of direction. You lived it everyday. This is just as much your triumph as it is your husband's.

Husbands and wives- we're a package deal.


Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
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Rebecca,
I can't believe this -- I live in PODUNK, TEXAS, too, and we've NEVER MET!!! Actually I live in the Texas Panhandle and our commute to Houston was 8 hours, but worth every minute. If we had only gone as soon as my brother was diagnosed. Like your husband, my brother didn't tell any of us about his sore until 8 MONTHS after it first appeared! Then he went to the doctors in the nearest large city. Big mistake. We should have headed for Houston right off. Anyway, 8 months later (seems to be a pattern, there) he was undergoing the surgery you described above at MD Anderson. Unfortunately, for us, the cancer struck back with a vengance following the surgery and claimed him by June. BUT, what I'm writing to tell you about is the Texas Insurance Pool. It is through Blue Cross, Blue Sheild and they say NO ONE can be turned down. Of course, I have no idea what your rate would be, considering the diagnosis. We were fortunate that David had a wonderful insurance plan that covered so much of his expense. Of course, I think the docs in the first hospital took advantage of that and just wrote him off from the get go and decided to see how much money they could collect - don't even get me started.
Anyway, Southwest Airlines will also help with free round trip tickets for the cancer patient and one care giver. Seems like they provided trips 3 different times for David, then provided them at a reduced rate. Check with the American Cancer Society. They often offer free lodging, though you need to let them know ahead of time. Some churches also have free housing available near the hospitals. Talk to the caseworker MD Anderson assigned you. They can help find these resources. Other than that, don't worry. The main thing is to get your husband the best treatment you can and know you are doing all you can do. Of course, it does help when the patient helps out a little, but, as hard as David's diagnosis, radiation, surgery and inability to talk or eat was on us, I can't imagine how hard it was for him to deal. (He will always be my hero.)
As for the forum, I could never get my brother on here, either (He was a tough guy, too, a toolpusher in the oilfield). So, I would print out the information I received here on his behalf and all the wonderful wishes and words of encouragment and give them to him to read. He was a very quite and private person and it was hard enough to get him to express his feelings to us, let alone in a forum situation, no matter HOW wonderful I told him everyone was. You may have to be your fiance's strength right now. I know it is hard - I've been there - but we Texan gals can do it!
Love you,
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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