| | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | trusting it is not cancer - prayers going up for Lani
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Has anybody heard from Lani even in private notes. We have been chatting and not hearing from her for this length of time is rare and odd. Just hoping someone has heard...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Everyone,
Thank you so very much for your prayers and hopeful thoughts. Thank you Susan for posting the news for me, and I receive all PMs also by e-mail, so I am getting them and thank you all very much.
The biopsy results aren't in yet. We're REALLY hoping for tomorrow. As soon as I get them and we have a battle plan, I'll let you all know.
The Doctor told my son he's 85 - 90% sure it's cancer, though. He said that the mass is golf-ball size, and not operable, as I'm much too weak to survive it, and also because of its location. It's right at the joining of the upper and lower lobes and the whole lung would have to be removed, and my other lung isn't very healthy, either, so it can't take on "double-duty".
Obviously I've been an emotional basket case since and haven't been very coherent at times. I go from complete and utter devastation to making stupid jokes about this being my last Christmas, so we better get those lights up now. At least the pain is less now - the Doc told my son to give me (and have my PCP made aware) of whatever I need for pain. As long as I don't stand up, I'm doing OK with that issue.
It's kind of pointless to write any more right now. I really need the results and battle plan. Just know that I have absolutely no thoughts of giving up (Doc told my son I would have maybe a month if I did). I will fight this with eveything I can and any strength I can gather together.
Again, thank you all so much. I promise to let you know as soon as I do.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Everyone,
Jus heard from the Docs, and they STILL don't have the results! This is frustrating to them, too.
My Lung Doc is in the process of setting up the tumor board now so that when they DO come in, we can hit the floor running. That in itself was comforting news for me to hear. I'm ready to leave for Gainesville at a moment's notice.
Don't know if I've mentioned it before to the open forum, but my son just graduated from CNA school/training this month. He's just waiting on the state testing board to set him up for testing and licensing. I'm in the best of care here already, and he'll be my caregiver at Shands, too.
Thank you all for everything. Again, I'll write when I find anything out.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | thoughts and prayers are with you gal. waiting is so hard. ((HUGS)) glad you are in good hands.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | 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 |
Lani
Hoping and praying for you.
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: 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 | Yes, waiting is the pits.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Go for it lani and show it that you are your own boss not some disease that you can whip. Good luck and we know you will make us all proud.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Man this waiting is excrutiating for us can hardly immagine what is going through your mind dear friend. I hope you are holding up ok...Never mind I know you are ok...your busy kicking butt!!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Keeping you in my prayers and thoughts as we wait for the news. Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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