#50753 05-25-2004 11:23 AM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Ok I am missing something here, What is happening in Vegas?? I live here, are ya'll meeting up in Vegas or something?? Please clue me in. Ok, My honey works at Cearsar's Palace. Always, Vicki | | |
#50754 05-25-2004 03:24 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Hi Miss Vicki,
I just sent you an email re: Vegas gathering.
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#50755 05-25-2004 06:26 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | This might sound off the wall but I'm going to say it regardless.................I picture Ed as an Eddie Murphy type without the foul language. I don't know why, but when I think of Ed I think of Eddie. Strange I know! Eddie makes me laugh and so does Ed, can't wait to meet him along with everyone else in Vegas.
Dani, Keeley is so beautiful, all my girls enjoyed the pictures. I am sending some your way also.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#50756 05-26-2004 01:31 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Dani, your daughter sounds just like me, except I can talk! If you don't believe me just ask Susan.  My laugh even makes me laugh it is so funny. I remember one time in Columbia, Maryland and we got snowed in for an extra day and while I was in the restroom, my youngest was in there and the scene just hit me a certain way. He was on the throne and I started the giggling and hysterical laughing. We came out of the bathroom literally rolling on the floor. He later told me that he was really scared when I first started laughing because he didn't know what kind of wierdo was in the bathroom with him. And, by the way, Minnie, my language has gotten foul through this whole ordeal...but only infrequently (I hope). See y'all in the desert! Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#50757 05-26-2004 03:05 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Hm. At least he admits it.  Sometimes he's got a pretty foul attitude, too. Under the circumstances - I don't much blame him. Regardless - YIKES! It makes me feel like a drop of water in a hot skillet - jumping around without a purpose. I'm so excited to meet everyone. Hugs to all. I'm off to peruse the posts... Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50758 05-27-2004 09:48 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | My mom was over yesterday babysitting my daughter and she looks soooooo good. She got a tan and she's totally starting to look like her old self again. She complains about the loose skin on her neck around where her neck dissection was so I told her to get plastic surgery and she looked at me like I was crazy. She said thats the last thing I would ever do after all the surgeries she has been through the last thing she would want is an elective surgery. Oops didn't mean to upset her but no complaints other than that and just the amount of time it takes her to eat. She is doing so well I'm sooooo relieved now everyday as a daughter of somebody going through oral cancer treatment my life gets a little easier.
My mom is going back to work the day after Memorial Day she has mixed emotions about this. I think it will be good for her I just hope it doesn't wear her out too much.
Take care everybody. I'm off to the Colorado River again for Memorial Weekend.
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#50759 05-27-2004 10:58 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Dani,
I know what you mean about the loose skin problem. I sort of half-joked with my husband that having radiation was like having a reverse facelift, and maybe I needed to do something to get it fixed. He said absolutely not -- your face is what you are and what you have lived and a sign of character. OK with me.
I hope your mom continues with her great progress. Going back to work can be tiring after this ordeal, so please be sure she doesn't wear down too much early on.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#50760 05-28-2004 05:50 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Hey all, Just wanted to share some photos of my little girl with with everybody. These were her Easter pics. She definately has a way of putting a smile on my mom's face so I thought I would share.... http://mystudio.kiddiekandids.com/viewshare.asp?c=522012313KQTFR9FD Try to click on that link if that doesn't work then type it in the address and hopefully you can pull it up. Have a great Memorial Weekend! Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#50761 05-28-2004 02:21 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Oh Dani,
She is just beautiful! How old is she? I know she keeps you busy but what a joy to have her!
Thank you so much for sharing her with us. Little "day brightener" is she!
God bless
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#50762 06-02-2004 10:17 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Judy,
Thank you. She's my little angel,she is 8 months old and gave me a terrible scare this past weekend. Her fever got up 103.7 and we rushed her to an Emergency Hospital in Parker, Arizona. If anybody is familiar with Parker its a tiny little town on the Colorado River and the emergency room was pretty small. They pumped her tiny little body full of Tylenol and Motrin and gave her shots of antibiotics and got her fever down. They don't know what is causing it so we had to take her to her pediatrician yesterday and she's going to do some bloodwork. She seems much better now but it was a pretty rough weekend for me. Nobody can truly warn you about what motherhood does to you.....
Take Care,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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