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#166952 06-22-2013 06:43 PM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
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Joined: Apr 2011
Posts: 9
How do I cope with the way I look? I am struggling with swelling in my face that makes me look freaky and disfigured. I am embarrassed to go out sometimes. Sometimes I don't care, but sometimes I don't even want my family to see me. I know I don't feel this way about other people, eg., don't care what they look like. I would appreciate any advice or if there is a smaller group dealing this issue.
Thanks,
Judy


1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
Judy L #166953 06-23-2013 12:57 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Adjusting to a new appearance can be a huge challenge for some people. Just remember we are all of our own worst critics and are more harsh when we judge ourselves. But at the same time, this is one thing that can be especially difficult for women to handle. In time your swelling will subside and you will be back to normal. Many times even the worst scars will lighten and become unnoticeable. Some people cover things up with makeup and dress with turtlenecks and scarves. OC can be so difficult since it affects the head and neck areas which arent the easiest to hide.

I am permanently disfigured from OC. Im not talking about some swelling either. Mine is severe, I am missing half of my lower jaw and have no teeth. I will never forget the shock I felt when I first saw myself in the mirror and didnt even think it was me as I looked like a monster. I used to be pretty but even after several reconstructive surgeries its obvious I am not a normal person anymore. Children would be afraid of me in the grocery store which was hard to adjust to for a while. Now I go out and give public speeches at OCF awareness walks and speak to students about the dangers of smoking. But no matter what I look like on the outside, I am still the same person inside. That is what you need to hold on to and go out with your head held high. Nobody can take away your inner beauty and strength. Looks will fade in time anyway.

Just in case you were curious, here is a recent article with my photo. This was in the OCF newsfeed which is free to subscribe to.

New Face of OC article




Christine
SCC 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 smile
Judy L #166954 06-23-2013 03:30 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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People don't see what you see when you look in the mirror. Most of us, when we look in the mirror, are looking for imperfections. For one thing, when we look in the mirror, what we see that is on the right side, is actually on the left side when others look at us. And, when others look at us, they are influenced by the total picture - not just the physical aspect but the influence of all the senses. This was proven to me years ago while in my twenties, working for a large company in Chicago. There was a young woman in our office who aggravated the $%#% out of everyone until finally after being fired twice, she was gone. No one thought of her as being particularly attractive and no one missed her. Then one day, as I was watching the weather news on TV, I saw a beautiful young woman who was the new weather girl. I admired her beauty but after several minutes, as I looked more closely, there was something familiar about her and I then realized with a shock that she was the same unattractive (to us), fired twice girl from our office who had been having an affair with the married weatherman! We had been influenced by all the negative aspects of this difficult person and could not see the physical beauty. It works in reverse as well. If you allow all the beautiful parts of what makes you unique to the world, people will respond positively to you. Those who may only look at whatever imperfections there are, are not worth your time.

Listen to what Christine says. She is one very beautiful lady!



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.)



Judy L #166958 06-23-2013 06:21 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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I couldn't have said it better myself. Dare I ask what the swelling is from?


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #166962 06-23-2013 08:15 AM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
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OP Offline
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Joined: Apr 2011
Posts: 9
I have a pretty uncommon cancer and a very rare presentation of it. The cancer is metastatic and spreads through the lymphatic system in my neck, blocking most of the drainage of my lymph system. For a while the usual treatments worked fine, particularly massage and exercise, which I did every day and with some wonderful therapists. But as the cancer has continues to spread and increase, it does not work. Now I am on steroids which help a tiny bit, but which cause swelling in other ways. (no win, huh?)

I know that I do not have that much time left available to me (no violins please!), but I just want to enjoy the time that I have with friends and family. The frustrating thing of course about OC is that from the neck down I am "healthy" and in good shape.

Appreciate the comments, it makes me think a lot about self-perceptions, what we see versus what we feel, and how we judge ourselves...



1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
Judy L #166970 06-23-2013 11:45 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Mucoepdermoid Carcinoma (MEC), Salivary Gland Carcinima.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Judy L #166982 06-23-2013 05:54 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Judy, I do understand where you are coming from. Christine and Anne-Marie have given you some great advice and from a good perspective. Please continue to live and enjoy your life. Don't hide away. You deserve more.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
ChristineB #167634 07-10-2013 10:30 AM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
Member
OP Offline
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Joined: Apr 2011
Posts: 9
hi Christine,
How long did it take to "adjust" I am so impressed with your attitude. How did you manage it? Any and all advice appreciated. My left side of face is huge and eye often swollen shut. NOt to whine...but. Between you and I we would have one "normal" face." It is hard not to laugh sometimes, and hard not to be depressed at other times. Is there a specific group that deals with these issues, being in public and so forth?
fondly,
Judy


1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
Judy L #167642 07-10-2013 12:06 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Judy, I have always been a very strong person. I was a single mother who raised children without any help. There was no one else but me so if I didnt do it, it didnt get done. When you live your life always being responsible for others, there is no other choice than to deal with whatever comes your way. Im sorry but I dont have any tips on how to help you adapt to your new normal other than to keep going. You are still you inside and those who know you and love you know you are still the same even if the outside package has changed a little. We are always our own worst critics so it might not be nearly as bad as what you think. Sorry, but I dont know of any support group that deals with disfigurement. Maybe try putting some effort into helping others, it can be a positive way to keep your mind from your own troubles by helping others with theirs.

Do the best you can with what you have. Best wishes!!!!


Christine
SCC 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 smile
Judy L #168751 08-01-2013 07:30 PM
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Feb 2007
Posts: 790
FYI Judy passed last week. Wonderful person. I had the pleasure of meeting her last summer.

http://albany.patch.com/groups/obit...r-albany-assistant-city-manager-19572013


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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