#50924 09-08-2004 01:34 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Yes Nicki I received your photo. Thank you for sending it. It printed out real nice. Sending some powerfull good vibes Tom's way.
Love Ya, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#50925 09-08-2004 02:39 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nikki, Each time will get easier. I kept a calender on my fridge and marked off each day. My radiation was at 10am each morning and it was the highlight of my day to come home and put that X on that day! I still have that calender in a scrapbook on my dresser. The simulation for me was by far the most horrific experience for me out of the entire treatment. I was enormously unprepared for what they did to me. I am very stoic so didn't say a word to anyone until I got in the car and talked to my daughter about it. I hated that mask more then I could ever express in words. When they tried to bring it out to me on my last day I stopped them. I had my whole family there with me and there was NO way my kids were going to see that horrifying thing. For as long as I live I will never forget that first experience of the mask. I remember thinking I was going to have a heart attack and the only thing that got me through was to count, just simple counting. I did get to the point where I wasn't upset by having it put on. The techs were experienced enough to recognize that I was apprehensive even though I didn't speak up about it. Keep pushing for the PEG. I was begging my doc to take it out the week prior to radiation, I was eating well and didn't think I would need it. Thank God that my doc had common sense and left it, or I would have been BEGGING them to put it in around the 4th week of radiation. Take care! PS. how far are you from Va. Beach??
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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#50926 09-09-2004 02:52 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hi, minniea! I was busy tonight reading old posts (I am learning so much by doing that 'research!') and found one from you that says you have 7 daughters!! How awesome! Tom and I have 3 children, but how wonderful it would have been to have been blessed with more. We do have 2 grandchildren already, so that is wonderful!
Today, Tom wanted me to take a picture of him while in the mask. Made ME nauseous, and I could only snap one. He's nonchalant about the process, but he knows it bothers me....
We didn't get to see the doc today; hopefully tomorrow....I am anxious to get this PEG issue settled. As far as I'm concerned, he WILL have it.
We live about 4 hours from VA Beach...my sister lives in Chesapeake, so we get down there from time to time. We LOVE staying at The Seahawk hotel on the beach...it has been awhile, however, and we'll have to see about getting back down there. Will you be in Vegas?
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#50927 09-09-2004 04:04 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nikki, Yes, seven of them, all as different as the next. They are Charity 24, Amy 22, Meg 20, Kelly 18, Mercedes 14, Skylar 12, and Sammy 10. We also have two grandaughters Kayla 6 and Shelby 5 with the third on the way (looks like the name will be Alexandria "Lexie" for short) and she will be here the end of October. I am so very excited about having a baby around again, we are certainly a baby loving family! I live right on the city line between Va. Beach and Chesapeake. My girls attend a small private Christian school that is actually in Chesapeake yet I can see the school from my house. We have been looking for land in Chesapeake for over a year now but not having much luck. I dream of somewhere that I can feel some freedom rather then looking out my window and see my neighbors house. I want some horses for the kids and lots of land so that each of them can build a house right close to me! They all live right here in Va. Beach now which I am so thankful for, four still in the house with us and the other three less then two miles from us. Amy went to University of Maine for her first two years but transferred to a school here when I was diagnosed. She always jokes me that I didn't have to go to such lengths to get her to come home, lol. It was an empty feeling for all of us when she was gone. I'm glad to hear that Tom is getting through the radiation with a good attitude, it will serve him well later down the road. My husband came to one radiation treatment with me, my last one. He just couldn't handle it so my daughter, Amy, always took me. I couldn't imagine having to watch someone I loved having that mask put on. I say a prayer many times a week that it is not one of my children suffering this. I can handle it for myself but could NEVER handle it for one of them. I have always said that if this disease gets me then I have the easy job which is to die and then go to my reward. My husband and children will be left here, without me, to work through the emotions of it all. Guess it's a good thing that I plan on living around 40 more years or so! Take care Nikki and when you get to Chesapeake again let me know. 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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