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#150607 - 06/10/12 05:48 AM Trying to Get On With My Life
kellijojo Offline
Contributing Member (25+ posts)

Registered: 03/04/11
Posts: 30
Loc: MI
Dealing with a lot of jaw pain and trismus. ENT suggested the tongue blade treatment. Decided to try my own. Went on eBay, and purchased a Molt Mouth Gag ($15) instrument for opening the mouth during surgery. Works well to stretch my oral opening. Much less expensive than a Therabite or Orastretch, since I'm now unemployeed and COBRA-ing my medical insurance.

Sold my sister's house in California. I'm using the money to remodel my kitchen...something my mom always wanted me to do. Wish she was here to see it...It looks wonderful! I know she sees it, but I wish I could experience it with her.

Had my total knee replacement done on Monday. Wow...I certainly underestimated how painful that would be!!!! This has been a heck of a whirlwind year and a half or so. Sister's suicide, Mom's inoperable cancer diagnosis, my cancer diagnosis, mom's chemo/rad, my radical neck dissection, chemo/rad, Mom's metastisis, Mom passing away, Dad's emergency surgery 2 weeks later, Mom's sister dying of ovarian cancer, me losing my job the next day and now knee surgery!

I've been concerned about thickness and pain in my tongue, where the original tumor was removed. My surgeon doesn't seem worried, but with his less than proactive suggestions for the trismus, I think I will ask for a referral to Univ of Michigan, as soon as my knee is rehabbed enough for me to get around. Pretty sure I'm not interested in another go-round with chemo/rad (once really was enough), but would like to know what, if anything is going on, and if there is a way to control the pain (botox injection in the masseter, or the pentoxyfillene/vitamin E for the radiation fibrosis.) I sort of feel like I'm dropping through the cracks. I need to start pushing a little, and see what else is available.

#150618 - 06/10/12 05:17 PM Re: Trying to Get On With My Life [Re: kellijojo]
Deejer47 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/16/08
Posts: 711
Loc: Chico, Ca.
I'm so sorry for all that you and your family have been through.

David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.

#150642 - 06/11/12 02:26 AM Re: Trying to Get On With My Life [Re: kellijojo]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Well you've had a bitch of a year! But you're here for a reason... I'm thinking that's your dad... Definitely change drs. If you feel the need. The knee thng can be very painful and it's a longish recovery! Hugs to you you're insanely strong to go through all you have and come out the other side sane.. smile
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

#150662 - 06/11/12 01:48 PM Re: Trying to Get On With My Life [Re: kellijojo]
cbhh Offline
Supporting Member (50+ posts)

Registered: 12/13/10
Posts: 60
Loc: SC
You have been dealt an awful hand this year. To have knee replacement on top of everything else...yikes! But, as Cheryl says, you are one wicked strong person. Sending hugs and strong healing vibes.
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.

#150991 - 06/18/12 08:16 PM Re: Trying to Get On With My Life [Re: kellijojo]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Sounds like you are taking some positive steps towards getting on with your life. You've been through such a tough time with everything that's happened. Good for you for the deal you got on eBay! Also, remodeling a kitchen can really be a great positive in one's life. (I did it almost a year ago and am still finishing up with it!) If you still have concerns re your surgeon's reaction to the trismus, your thoughts on asking for a referral to Univ of Michigan sounds like a good idea and can get your questions or concerns answered especially regarding ways to control pain (w/ botox, Vit. E, etc). Absolutely you should Not allow anyone to make you feel like you are dropping through the cracks. "Pushing a little" is in order. Do it! And let us know what happens.
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.)


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