Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#50305 06-08-2007 05:11 PM
Joined: Dec 2006
Posts: 77
Senior Member (75+ posts)
OP Offline
Senior Member (75+ posts)

Joined: Dec 2006
Posts: 77
Hello everyone. I haven't posted much lately. Mostly because life has been crazy for me. I lost my job and have been working hard to find a new one. The hard work has paid off, I was offered a job this week. As much as I was enjoying my unplanned "vacation", it makes me worry a bit less knowing that soon, I'll have a paycheck coming in. I'll be working for the Minnesota Department of Health in the HIV/STD division.

I am working on raising some money for OCF, because it is such an awesome place. And I am doing my best to get the word out about oral cancer.

My local newspaper is featuring oral cancer in this weeks edition. They tell my story, but I think she did a great job of telling about oral cancer.

You can view the article at http://www.thisweek-online.com/depth.html

As for my health, everything is so far, so good. I have had a swollen lymph node for weeks, but the doc wasn't concerned. I finally left it alone and amazingly, it has now disappeared.

God bless you all,

Amy


Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
#50306 06-08-2007 05:14 PM
Joined: Dec 2006
Posts: 77
Senior Member (75+ posts)
OP Offline
Senior Member (75+ posts)

Joined: Dec 2006
Posts: 77
The article's appearance differs in the online version. The actual newspaper article has more pictures, including my post surgery x-ray. If anyone is interested in seeing this, I can email it to you as a pdf file that shows it as is. It looks much nicer than the online version. Let me know if you want me to send it to you.


Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
#50307 06-08-2007 09:36 PM
Joined: Mar 2007
Posts: 525
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Mar 2007
Posts: 525
Great Job Amy!

Congradulations on the good news from the doctor. Ditto and good luck with the new job.

More and more people are getting the word out. We really need to find a way to have the doctors and hygeinists get the old "profiles" out of their mind and that anything that lasts for more than 2 weeks in the mouth should set off all the bells and whistles.

It looks like the writer did a pretty thorough job. Amy, I do not know what it is, but when you get this disease it makes you an instant advocate.

I still find it upsetting how many miss diagnosis there are.

Thank You again. Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#50308 06-09-2007 12:32 PM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Amy,

Great job and good article althought I don't agree with all that was said.

Keep up the good work.


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.
#50309 06-09-2007 01:38 PM
Joined: Dec 2006
Posts: 77
Senior Member (75+ posts)
OP Offline
Senior Member (75+ posts)

Joined: Dec 2006
Posts: 77
David,

I am just curious about what you didn't agree with. The writer did the research and I didn't verify it all to be correct, not that it would have mattered, because she wouldn't let me see it until it was already in print. But I was just wondering.

Thanks, Amy


Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
#50310 06-09-2007 05:23 PM
Joined: Jan 2007
Posts: 735
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2007
Posts: 735
Amy


Way to go !!!! I would love to see more photos and all so if you could please send me the link I would love it !!


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
#50311 06-09-2007 05:34 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
I'm glad that the article got out, it got the basics right, and told an important personal story. But I was really disappointed with the writer who spent an hour and a half on the phone with me, and still didn't get what I said correct. Then at the 11th hour, 30 minutes before it had to go to print, sent me 4 sentences to proof, not the whole article as she promised the day before. I would have reworded some of the points for her. As to Amy's part, she got the story out and more people will hear about oral cancer and early detection. Every story matters, even if it has a few technical issues or misquotes in it.

Unforturnately this is the way with the media. Some are better than others, for instance Amy Marcus who interviewed me for the Wall St. Journal, not only let me read it all before print to get my quotes right, but had an independent fact checker verify through me and others that the facts in the story were indeed correct.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#50312 06-09-2007 07:12 PM
Joined: Dec 2006
Posts: 77
Senior Member (75+ posts)
OP Offline
Senior Member (75+ posts)

Joined: Dec 2006
Posts: 77
I am still happy to have gotten this subjet in print in my area, even with some errors. I am truly sorry that happened because she seemed to have spent so much time checking her facts. But realistically, I didn't get any input. I told my story and that was that. And you can bet that if I'd have had any input at all, I would have done away with the horrible photos = )

I guess that my "myspace page" has maybe done just as well to get the word out. I posted several blogs about my experience between December 2006 and March 2007. During that time, I received several messages from people asking for more details about OCF. I passed that info on, and maybe, just maybe, some of those people are members today. You can see my page at myspace.com/ickymommy. (my kids picked the 'ickymommy' name.) And lest you think I am a complete teenager--the only reason I have a myspace page in the first place is because my babysitter put me up to it. That, and all us kids are doin' it!!


Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
#50313 06-10-2007 08:21 AM
Joined: May 2007
Posts: 622
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 622
Great article

I got one of the same statements with my tongue SCC. "If it hurts, you're ok, cause if it was cancer it wouldn't hurt."

Famous last words.....

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
#50314 06-10-2007 10:47 AM
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Hi Amy,

Petey, my watch dog, let me know early yesterday that you got your article published. This was the first chance I got during a very busy weekend to check it out. You really did a great job.

Even though some of the facts may be incorrect, the important thing is that the message that early detection saves lives was there. Also making more people aware of the HPV connection, is doing a great public service.

I have an article coming out in the American Dental Association News this coming week and I was fortunate enough to see a draft of the article. It is about the NYC Walk and I wanted to plug the fact that the money rasied was going to OCF. It wasn't in the draft so I told the writer. She never got back to me and I am hoping the she got that fact in as well as a link to the OCF. We really are at the mercy of the writers and publishers.

I hope things are moving along for the walk in Chicago. I'm sure you will be succesful in raising money whether the walk takes place or not. Don't forget to send in the check I sent you for the walk, earlier in the year.

BTW, I don't know what "tater tot hotdish" is, but I would sure take a steak over it any day.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5