| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | OOOOOOHHHHH....Cookies!!!! Wow I wish I could eat those  David, if you can eat cookies, have a few for me. Suzanne, I sure hope we can do that road trip. I had wanted to see Patty. I miss her very much. Charm, it really really stinks, but we must do the best we can. Im a huge believer of positive thinking. I do not focus on WHY ME or wallow in self pity. Sure I have some moments where it bothers me knowing what is to come and how my life will change yet again. I cant stop and worry about this, all that does is cloud my mind so I cant make any progress or enjoy life. I prefer to make the most out of the hand I was dealt and enjoy the time I have right now. Worrying about this only steals my time and energy. I recently bought a mountain bike and rode a 26 mile trail with my son. We had a great time and I will do this again before my surgery. Pete, its nice to see you posting. How are you doing with your recovery?
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That's awesome about your bike ride....man I need to get in shape!!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | 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 | Christine,
That's great. I did not know you were into bike riding. Since I haven't seen you post before I assume your butt was/is a tad sore?
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
More power to you. One reason I keep returning to OCF is a very selfish one: the incredible bravery and strength that people like you demonstrate helps me fight my anger and depression over the total unfairness of it all. Don't we all wish we could have been like the celebrity chef mentioned in another forum who just sailed through treatment and has full remission?
You are right of course about the positive attitude and for the most part I am quite cheerful and count all my blessings. Plus there are positive sides of the cancer For example, I will never have to worry about my weight again and I don't have to apologize for hastily spoken words anymore
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was gong thru thr papers on my desk. I found pattys phone number and address plus in my computer I have a lot of pms from her, I'm just gong to keep them in rembrance. I wish I could have printed out the pic of her in the Illinois Funeral home she was at. Such a beautiful personm amd what a waste of 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | EZJim :thanks for indirectly saying what has been putting me in such a shitty mood.
Christine,
we just lost Patty and we don't want to lose you. Just knowing that someone like you, who has such an indomitable spirit and ultra positive attitude can have yet another recurrence makes me question the preventive or curative powers of mental attitude. Of course, a positive attitude does let us enjoy the time we have, whatever that may be. Our local papers have written up a story about a mother driving a van of kids whom a tree fell on and killed on a short trip from the swimming pool. Sounds trite but I know I should be grateful for the time and life I do have. People like you are truly inspirational,
Charm
Last edited by Charm2017; 07-14-2009 02:37 PM. Reason: format
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | David, I hadnt ridden a bike since I was a kid. My son got me started a few weeks ago. We went on a 9 mile ride (mostly downhill grade) so I thought it was cake and went right out and bought a bike. We next attempted the 26 mile trip which was mainly an uphill grade. I did ok til about the last 3 miles, by then I was wiped out. When I bought the bike, I invested in a padded seat and it was worth it, no sore butt Charm, I understand you very very well. This STINKS!!!! Ive been thru an awful lot already with my 2 rounds behind me. I know just last year you had gone to Italy and now here you are sick again, anyone would wonder the big question of WHY???? But we cant dwell on it or it will make us crazy. When we see things like that chef speak about it, that just makes us angry. How arrogant he was when he said 'dont you know who I am, Im a chef'. He got lucky, so far. I must just continue my life as best as I can. Im trying to cram alot of life into a short time right now. Wasting time worrying isnt helping me at all, it makes me sad and upset. Some days its real work being optimistic, then I just remind myself it sould be so much worse. Dont you even consider losing me, Im not going anywhere!!!! I will be absent for a couple weeks while Im in the hospital, but I will be back I miss Patty very much. She was so kind, level headed, witty and practical. She is watching out for all of us right along with everyone we have lost along the way. Neil, Brenda, Minnie, Lori's husband Ron, Sof, Petey and everyone else who has battled this terrible disease and suffered thru are my heros. They are the ones who inspire me. Its a beautiful evening here in PA. Im going out for a short bike ride and to play with my dogs outside. Thats how I deal with this, by finding things I enjoy doing, it helps me cope. Hope everyone has a great evening
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 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Christine, my recovery is moving right along at glacial speeds. Still have no swallow path and fluid builds up above and below, so I can't speak but lately I have been trying. Turns out the lack of speaking is bothering me the worst as I am normally very talkative <g>.
My daughter has just moved in with me, so I need to keep the clipboard handy at all times, not just when I have company.
It's strange how we sort of get accustomed to this 'chronic cancer'. My third round upset me the least, although the recovery time is affecting me.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 | Christine, Jim and Charm�Think you are all amazing and now we learn the you have taken up bike riding Christine  I also miss Patty as she posted and sent PM�s and emails to encourage me. Some were not long before she passed away. Jim I downloaded the notice with the photo of Patty and will send it to you in an email. I pasted it into a word document so if you cannot read it let me know and I will send in another format. It really is a lovely photo of her and if anyone else would like it just let me know and I will email it to you. Keep up the positive thoughts Christine  Gabriele
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: 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 | Should have including you Pete in the amazing catagory. Also glad to see you posting again 
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
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