#43320 05-20-2004 10:56 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | I feel like a COMPLETE loser, but I COMPLETELY don't care. I was just SOO happy to have PHase II done today (Brachey is Phase III). I'm curious if others went through the crying and the feeling about the mask I did <see below>. The following is part of an email to friends/family this AM:
I can | | |
#43321 05-20-2004 12:41 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Sabrina,
You are soooo strong and sound like you held up so well through all of this. Are you still eating by mouth? I remember wanting to celebrate with my mom on her last day of radiation but she was sooo sick that we had to wait for the celebration. It was the longest and hardest six weeks of my life so I can't even imagine how long and hard it was for you guys actually going through it. My mom went through a lot of emotions with the mask and the machine breaking down and what a pain in the butt it was to wait for the machine to work again. It was very very frustrating for her also.
But great news. My mom saw her Oncologist yesterday and she said that my mom is doing better than anybody she has ever seen go through her type of radiation at this point. She said everything in her mouth looks fine and she is healing beautifully. You can't even imagine the relief my mom felt and what a great nights sleep she got last night. This is just 11 weeks after completion of radiation and chemo.
You are a riot and have such a positive attitude. If your ever in California we will have to meet up. Your posts always have a way of bringing a smile to my face. I love your sense of humor!
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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#43322 05-20-2004 02:49 PM | Joined: Feb 2004 Posts: 1 Member | | Member
Joined: Feb 2004 Posts: 1 | Sabrina, I just wrote you a response that then disappeared just as I was about to post it. This is the first time I have posted to this board. I want to say a hearty congratulations for completing phase 2 of your treatment. Strange, but I think I can picture you--are you the beautiful young blond woman at Mass General who sat with the man with the laptop for radiation at 7:30 each morning? No I am not stalking you.... I was there because my husband, Shel's radiation was just behind you each morning (well, 2 after you), which he also finished today (a course of 33). Double cause for celebration!
I know Shel is looking forward to sharing his radiation story with the rest of you, so I'll leave the details to him. However, I will say that it feels wonderful to have him back home in Vermont--just in time for our younger son, Jordan's, graduation from Middlebury College this weekend. Since we are a local family, we are hosting a party on Saturday for our son, his friends and their guests--a large party, tent and all, for at last count 140 people! This celebration was in the works before Shel got his diagnosis in January, and I am happy that I proceeded anyway. There is a lot to celebrate! The graduation will be particularly moving because Chris and Dana Reves will be the graduation speakers.
Sabrina, I wish you well with your next phase of treatment, and I look forward to hearing how it goes.
Peggy
Cornwall, Vermont | | |
#43323 05-20-2004 03:40 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | HOOray Sabrina! I still have my mask...don't know yet what to do with it but I'm sure it will be fun.  Peggy, Is that the Shel we heard from a while back? and is he still able to play music? Glad to hear from you! let us know if we can help with the "effects"
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#43324 05-20-2004 03:45 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 | Sabrina,
WOOHOO! Psssst...I have to tell you a secret. I boohooed, too, and I still get a little teary eyed when I see the mask on my closet shelf. Just wait; as you get better and journey back for follow up appointments you will get to stop by and see everyone again. When they see how good they helped you get, it brings tears to their eyes, too. I thank them profusely and let them know how much I appreciate what they did for me.
I had a Vietnamese Radiation Oncologist who I was told all over town he was the best in town. He asked me on the first visit if I was really thinking this through with the long drive daily and all. I smiled and said, of course, I hear you are the best. His jaw dropped, he gulped and said OK...let's get going ,then! He runs down the hall to hug me everytime he sees me. As a Japanese descendant, I know it takes a lot for an oriental to express emotions like this, especially to another man. God bless him.
Dani, I am really happy for your mom (and you, of course). Nothing compares to visits like your mom had yesterday.
Peggy, it sounds like a God thing to me! Welcome and I hope your celebration is especially wonderful!
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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#43325 05-21-2004 01:50 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Dani - I was *extremely* lucky, and have been able to eat through the whole process. Well, eating means drinking ensures all day. The rest of my fluids come from virgin jello shots - it burns a lot less and is keeping me hydrated.
My little sister-in-law, Leslie, is moving out to CA (for good, but the parents don't know yet - SHHH). I'll definitely be out there sometime!!
Congrats to your mom! But she better watch out, I'm right on her recovery heels. I'm all about getting this show on the road, folks.
Peggy - I can't believe it. That was me!!! But I don't know about the beautiful part! The laptop guy is Jim, my husband! Now I regret not looking around more. I'm sure if I saw a picture of you two, I'd say "oh yeah!!"
That fishtank drove me nuts!! I have NO clue why I sat next to it every day. I just wanted to grab that stupid clown fish and make him swim somewhere else. I'm mean, COME ON, live a little.
Congrats to you husband (did he have Dr. B----, too - LOVE him) and Jordan! Leslie is graduating from UNH this weekend. She wanted to party-hop, so her celebration is next month and nowhere near as big! Bless you for organizing that!
Ed - I'm VERY glad to hear I wasn't the only emotional rollercoaster. I feel the same for my medical team; I couldn't be more grateful for them. I can't wait to return (healthy) and see them again.
Sabrina | | |
#43326 05-21-2004 03:41 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Sabrina,
You are amazing!!! A real inspiration...
LOL,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
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#43327 05-21-2004 04:59 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Sabrina,
Congrats!!! You have obviously done well, and deserve the chance to celebrate. Think I'll go ahead and say it. "it'll be downhill from here!"
I cried when leaving the last day of radiation too. Although I did not keep my mask. (might have if I'd have thought of running over it with the car!)
Take care,
Dinah | | |
#43328 05-21-2004 05:34 AM | Joined: Feb 2004 Posts: 40 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 40 | That last day of radiation for me was like quitting a lousy job. I hated that waiting room. I hated the elevator. I hated smelling the carpet & parking garage. Monday-Friday w/ weekends off--UGH! So when the bite & mask were offered I told them to toss that thing right in the trash. Outside my car I
Dig.7/03 3cm+ lymph nodes & base of tongue tumor. Radical neck dissection w/removal of one neck muscle, laser removal of tumor. 47 sessions of radiation, 2 doses of Cisplatin & PEG tube 40yrs old non-smoker/drinker
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#43329 05-21-2004 05:54 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Sabrina,
I've been wondering about that fish tank. Fifteen years ago (when Dr. B---- was handling my radiation at a different hospital) there was a fish tank there in the waiting room. I thought maybe it followed him to MGH!
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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