| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Eric, you silly boy!!!! Thanks for self monitoring, saves me lots of time! LOL Sorry... now back to the post! Eric and I know what it is like to be disfigured. Not just a little scar that can be covered with makeup either! What has happened to us is unfortunate but it is not going to keep either of us down! We both are full of pep and vitality and it would take a heck of alot more than our looks to hold us back from enjoying our lives. I used to be very pretty but cancer took that from me but it couldnt take my spirit and optimism. I feel sorry for anyone who thinks that their appearance is really so important that every flaw needs to be concealed. There isnt a person out there who is perfect in every way. All the makeup in the world cant cover a miserable or mean personailty which will shine thru even the thickest pancake makeup. Its very sad that your friends husband thought it better to look nice than to live. He could end up dying or living his life as a disfigured person due to his delay. I would much rather be alive and disfigured than to lose my life because of vanity. In case you havent seen this yet, here is a link to a video of me talking about how cancer affected my life. Notice, I am very disfigured and have my struggles but it wont keep me down! http://www.youtube.com/watch?v=quZb0X8KZTk&feature=BF&list=SPBEBA5E342EAE2178&index=1 ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Re Vanity - First of all, when it concerns the loss of the way one used to look, I don't think it is vanity to remember the physical beauty that was there and enjoy the memories it brings. It's like losing a friend, and remembering the happy times and beauty of those times together. There can be a mourning period and a time for sadness and even depression, but soon it turns to the happy memories that can always be there to enjoy. Choosing Vanity over one's life, however, is just plain dumb, and selfish to those around you who worry about losing you when you lose your life. Secondly, most of us tend to see ourselves differently from the way others do. We get in real close to the mirror and focus on one particular area. Others see a much wider area and are influenced by other physical and non physical things. I was reminded of this years ago in my twenties with a co-worker in our office that no one considered particularly attractive. She was very difficult person to be around and just aggravated everyone. Several weeks after she was finally let go (fired) I happened to be watching the weather news and there was a new young lady giving a portion of that newscast, and I thought, Wow! what a beautiful woman!! Then, as I paid closer attention, I recognized her as the same person we had known in our office and whom no one ever thought was particularly attractive. I knew then, that there are many influences which help us decide what we observe as beautiful. And Christine and Eric are two of the most beautiful people I know!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | The courage of Christine and Eric is inspirational to us all. I was extremely fortunate that all my cancer damage is invisible. My scars have faded to nothing, the plates and screws in my jaw aligned perfectly leaving only a dimple in my chin. Heck the plastic surgeon who did the flap also got rid of the turkey waddle neck when he was putting my jaw back together. I even grew a handlebar mustache so I look the perfect picture of health. As long as I keep my mouth shut and my shirt on to hide the feeding tube, no one's the wiser. Christine's video is very powerful. Anne-Marie is right, those two are beautiful people in the best sense of the word. Even though the subject line is a rhetorical question, I minored in rhetoric, so the answer is NO. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | My husband also took a picture with his cell phone of me when I was hooked up to the IV during chemo. He wanted me to see how far I had come!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Christine, you are beautiful inside and out! You are an inspiration to all of us!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Sep 2010 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | "OCF Kiwi Down Under" Supporting Member (50+ posts) Joined: Sep 2010 Posts: 63 | looking perfect is overrated anyway, 2 yrs 7wks down the track i have a crooked smile still ( though surgeon says could improve it in time ) they took all my teeth and all i would be able to have is implants but since i wont be able to eat harder foods again i can happily live without. under jaw odema is taking its time to subside after dissection and thats about all that annoys me vanity wise. i have to renew both my passport & d/l this year so will have to make an effort to keep my mouth as straight as possible. no contest for me , looking a bit odd against being worm food i preferred the former. ( always looked odd anyway . haha)
45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09 T3NOscc oral(ex smoker ) open tracheostomy , removed oct 12/09 modified neck dissection lymph nodes I to IV rectus abdominal flap + full dental removal 30 day radiation treatment ,diagnosed with lung cancer oct 2011
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I agree - "Looking perfect" is way overrated. We see so many perfect, airbrushed people that after a while, they all look alike and there is no individuality! You almost cannot tell one from the other! And it gets boring. I'm for those differences that make us individuals and interesting and beautiful.
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: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | Christine: I just watched your You Tube video clips and I applaud your courage. You are a beautiful person inside and out. Did you ever notice that people who are so wrapped up in their looks are often very unhappy miserable people on the inside ? Who needs that ? Vanity is highly overrated !
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I guess that I just look sort of lopsided! But, I'm stil here. Yea!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 62 | Eric, you always give me the best belly laughs! Bless you for your sense of humor and your ability to see the funny side of almost everything.
I haven't had outward disfigurement from OC surgery just the mangling of consonants from tongue tethering. I did, however, have Bell's Palsy nine years ago and the left side of my face is still showing a little paralysis and synconesis (sp?) which is when the nerves don't quite get hooked up correctly as they come back on line. Subsequently I close my left eye when I smile and when I close my eyes the left corner of my mouth goes up. When I chew I look like I'm winking at you!
Never realized how vain I was until that happened. Don't like having my picture taken much now but I still do my best to appear well put together. Should the future require more surgery and potential disfigurement I'll accept that as part of the fight. I'm tickled to death to be alive with loving and supportive husband, family, friends and clients.
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
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