#70175 02-20-2008 06:47 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Well, I did what I said I was going to do....rode down the A1A in honor of our friend,Petey B, and pulled the tops off countless "Forget Me Nots" and threw them into the wind. I needed to do that for Petey, and for everyone we have loved and lost. It was a strange kind of release for me, one that gave me hope for the rest of us. I also threw them up in the air for all of you who are battling, and for all the caregivers, in the hopes that you may never let your spirits drop.
I love and admire so many here--forever you will be in my heart.
Donna
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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I hope Petey was looking down. I know he would have had something to say.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | My guess would have been him bent over laughing as the state trooper pulled us over....
I can talk fast at times, really fast. Instead, I was in tears and laughing at the same time. I probably looked a bit insane. I explained why and what they were exactly--have to say he was very cool and blessed everyone. Then he told me it was considered littering and not to do it again....I said ok but? just this one last bunch, please? He rolled his eyes,asked me to wait until he was at least a mile ahead of us.
Ed asked, "Have you ever heard of the term pushing it?" Well...yeah. What the heck was his point?
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.
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | [quote=Donnarose]My guess would have been him bent over laughing as the state trooper pulled us over.... [/quote] I couldn't agree more !  Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | How thoughtful of you to do that Donna. Such a nice gesture. I'm sure Petey was having a chuckle when the cop pulled you over.
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
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hope you are doing well Jim!
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.
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Donna...THANK YOU for honoring Petey AND for posting to let us know....I really, really needed to relieve myself of these pent-up emotions I have been supressing since Petey's passing....Something changed in me the day he died, with the loss of others, Robin, Wally and others...and I have never quite fully recovered emotionally..No, I can't properly explain my feelings, but between your posting and the disheartening news of Bren, at least I have unburdened myself of some of that long-held grief tonight...Hopefully I will again feel comfortable posting and reading the forum......soon
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!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | When Robin passed we handed the baton to Petey and unfortunately he was not able to run with it for long.His loss turned yet another light out in my life,and i know Bren felt it badly too.She took up the challenge and ran and ran with it,and it was easy to forget that she was never given hope in the first place.But that didn't stop her she gave it her all.
Now i am watching the last of our little band who all travelled together last year fighting for life.
Sometimes it is all too much to bear and it opens wounds that are still very raw.
I spent quite a few hours tonight reading all my e-mails from Bren and Petey and all their old posts,and my heart is so heavy.
What i had forgotten is that in all those posts and e-mails there were the success stories.People like Dan and Margret,Deb and Bill,Jeff,Alan Collen,Eileen,Anne Maries son,and many many more who won their challenge and have moved back in to the mainstream of life.
For that we must give thanks,and for Robin,Petey,Rich,Brian,Walley,Pauls Mum,and all the others we remember your struggle with love and pride,and tonight a very very tearful smile.
love to all 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.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Lois,
I was honoring Petey and everyone here who has lost someone they love...and in doing so hopefully letting everyone here know how special they themselves are. Not to mention, it was fun and kind of like a healing at the same time. I'm happy that it made you feel better.
Oh, I want to say something about Bren here....I can't find the words my heart is feeling. I wish we could all be with her "Suey" right now, and the rest of her loved ones.
Take care Lois.
Love,
Donna
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.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Liz,
You've said it all! I too spent quite a bit of time reading old emails from Petey, Bren and YOU--when you were going through the worst of it. I've always been amazed and awed by everyone here, God love and bless you all.
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.
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Donna
I too would like to say thanks ...I have also had a really hard time since Peteys death ..and alot of the others as well. And now this news of Bren ..
I know it sounds crazy ..but it is like somtimes I feel like if I just stay away from the forum it will all go away ..and I know it isnt real and it isnt true. And I need you guys more then anything ..But the reality is soo soo scary .
And while you want to move on to a some what normal life ..you find yourself questioning why me ? Why was I the lucky one ? When will it be my turn to go to battle again ? It is like a sense of relief and a sense of guilt for me all at once .
I just finally had my biopsy and I will get me results on Tues.. I love you all so much and even the ones that are no longer here... I just hate this that all ..
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Shar we all hate this dreaded disease. I for one have never questioned "why me". I know you are a very brave lady just from the few words we have exchanged. You have a few little feet in your life that has to add to your worries, which I would venture to say, not many of us are still raising families. I know that some are. Just be brave Shar and face it head on.. I wish you the very best with the biopsy results. My last rad today and then more viopsies Tues before the implants te 29th. Must admit, I am worried too.
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
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Good morning Shar and Jim,
Shar--it's been so long since we chatted, I think about you often.
Jim, you're going to do great!
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.
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