| Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I have requested that the administrators of the Oral Cancer Foundation Forum remove subject topic that I initiated. It is non-oral cancer related. I persuaded Brian Hill to remove it. He is kind to honor my request. Thank you!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Aug 2010 Posts: 75 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2010 Posts: 75 | I wish the best to you both. This is an opportunity to heal--both physically and emotionally.
CG to sp age 53 4/10 BOT IVb 6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes 7/10 Cispl & Rad 1/11 recur lung mets 2/11 Clin Tr Erb Carb 5FU last 5/11 7/11 Tumor growth began wkly Bleo, Taxol, Carbo 10/28/11 Hospice; Passed 11/7/11
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Wishing the very best for you and your family in all areas of your life. Please stay in touch and let us know how you are doing.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 |
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I didn't get to read it but am glad I didn't. I went thru some strange stuff after my surgery and loss of teeth with what I thought was going to be my wife. poof and she was gone. Good luck to you both. You both need another chance at a good life.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Right on, Jim, there must be a lot of "pouf-ing" going on because right after my son was diagnosed with his cancer, his current girlfriend also went "pouf"! However, he now has a girlfriend who is one in a million and his new normal is better than ever! So, there is life after "pouf".
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | The pouf factor. That is so sad. I guess after 27 years of marriage, I couldn't imagine pulling a pouf, divorce or no divorce. I'm sad that anyone would be made to suffer in such a way when they are seriously ill.
Anne-Marie, I am so happy for Paul! And Jim, please take heart that there are wonderful women out there with more character than the woman who went pouf.
Love, Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jan 2011 Posts: 15 Member | Member Joined: Jan 2011 Posts: 15 | Poufing is not nice. Sorry EzJim and Anne-Marie. Jim, Sandy is right. There are some real women out there with integrity and character. BTW, you did miss some entertaining stuff.
Joel, 52 SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Well, Joel - in my son's case, I think he had to experience a few "poufs" before he could appreciate and be ready for the real woman he has now and has been with for over a year. She is so sweet and caring and loving to my son, I feel I have gained another beautiful daughter. And Jim - Joel is right, you missed some entertaining stuff, but with genuine caring and compassion evident. Joel - We will be thinking of you and sending positive vibes on the 22nd. Hope all goes well.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 |
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | You put a rabbit in a hat, cover it with a handkerchief, and wave your hands over it saying some magical words..... you the remove the handkerchief, and pouf! The rabbit has disappeared!!
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. | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | oh dear...not nice...I wouldn't have dreamt of considering myself a rabbit!!
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @ Jeanna: Poufing is disappearing on a significant other who is stricken with a serious illness. It comes from the sound "Pouf" as in what happens when a magician makes something disappear. It happens when a spouse, fiance or girlfriend/boyfriend can't handle sticking around to see someone through their treatment or isn't able to handle the "new normal" that is their loved one's new existence. These people might go "pouf"... never to be seen again. Very sad. You are the polar opposite of a poufer.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I like Brian's rabbit analogy. I have bunnies as pets. I love my little furbabies! Uh oh...I hope there aren't any bunny boilers lurking in the shadows! hee hee
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Sandy, I love animals too - they are just so delicious!! JUST KIDDING. When Barkley died last month after being my 24/7 companion and best friend for 12 years, I was crushed. The deal that non dog people don't get, is that dogs give you completely unconditional love. You can't get that from most human beings. I don't trust people that don't have a thing for animals.
I have a friend who taught me to fly small planes in the mountains and Idaho backcountry. He takes people out fly fishing in his plane and lands right on the river sand bars (see my blog if you don't get what a deal this is). He has a flea bitten, Heinz 57 varieties, best friend that rides in the tail cone of the plane when he's out in the backcountry, and that dog has been around since I can remember. One day I asked him if he'd ever been married, and he answered through about a weeks worth of stubble on his face, that he had indeed tried it a couple of times, but he much preferred the company of his dog. He said there is a simple test to determine if you want to spend your life with a woman or a dog, and it goes like this.
You take your wife and your dog, and you lock them both in the trunk of your car for about an hour. Then when you come back and open up the trunk see which one is glad to see you.....
Sorry ladies.... it doesn't' of course reflect my opinions, since I've made a marriage stick now for 25 years. Of course it took some practice... there was number 1, and number two and......
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. | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | That wife and dog test is so-o-o-o funny! it's true, though, about the unconditional love - and dogs have done some wonderful and heroic things for people. I have noticed that anyone who has pets is usually a very nice, caring person. I had a very nice, very caring male friend when I lived in Canada who had a goat. My two boys would go visit that goat and pet him almost every day. One day, when I went to visit my friend, the goat was nowhere in sight and as I walked in the front door, I asked where the goat was whereupon he led me to his refrigerator, opened the freezer door and pointed to the neatly stacked packages of frozen meat. I guess it depends on your perspective how you feel about certain animals, but I had a tough time that day explaining the goat's disappearance to my boys.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Brian...I liked your advice and tried to put Aly in the trunk of my Buick. I am now recovering from the severe beating I recieved. I think it may have been different if I actually got her into the trunk though and when I'm out of this body cast I'll give it another shot.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I love how this topic has taken on a life of it's own! @ Brian: Hilarious story! @ Anne-Marie: awwww.....and then....eeeewwww!
I completely understand about losing Barkley. It's something you never completely get over. It took me 4 years before I would have another dog after our dog, Hannah, died. She was my first baby and was with us through all those family-growing years. When we brought our dog, Wyatt, home as a puppy, I started crying when we pulled into the driveway. He was sitting on my lap and was just such a sweet little guy. It made me remember the last time we had our Hannah at home. You are right, it's that unconditional love that you don't get from anyone else but a dog. Wyatt made me realize how much I missed it. I'm sorry for your loss.
Now, as for goats...yikes! I hope Paul knows the real story about the goat. If not, I hope he doesn't read Anne-Marie's post!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @Brian: Loved the pictures on FB! Barkley--Apricot Standard Poodle, right? What a sweet face!
You are still green! Are you still nauseated from last week's forum escapades? haha...:)
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Brian, I am so sorry to hear about Barkley!
I would have never made it through Tx without Edwin and Max Jr., my 2 Bichons Frises (well I guess my wife helped a little too). Max Jr. died last year, of OC, of all things. I got a Maltese (Chase) last year before Max died and that helped the transistion a lot but I still miss Max very much.
I love my dogs - they're better than children. I have pictures of them on my Facebook page.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | And they are so cute Gary
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | 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 | On the one hand I pray that my dogs, both around 4, out live me so I won't have to deal with their passing but on the other hand I would hate for them to have to deal with me passing as they are literally with me 24/7. Me leaving them for 30 minutes is bad enough as the looks of dispare fill they face when I leave.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @Brian: I watched the videos! Wow! Takes guts and skill...and nerves of steel! I enjoyed reading your blog. It is beautifully written.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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