| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | lol...that's what I thought. Lets give the girl who had some tongue removed the hard cereal..lol They gave me a banana too. I thought that was strange too. Luckily I ate my cream of wheat fairly quickly at room temperature:) I knew people here would understand why I thought that was so crazy!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Suzanne So glad to see you up about and as positive as ever. "Less is more" for surgery for sure. Have a Happy Valentine's day - (do a chocolate Ensure Plus  )
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: 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 | Hi Suzanne, Glad you are doing well. I had my day surgery on Thursday and with around 15 stitches that I can count I am back on the liquid and mush diet for the next week. Sloppy mashed potato with melted cheese last night. Just had my breakfast bannana/peach smoothy. That stick blender was the best investment ever. For Valentines Day I should be able to manage a chocolate mousse. We have to have some treat 
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Without cream of wheat I would starve. I mix a little bit of coco wheat in with it. Back down to 164 and trying everything that says food on the label. This anneurysm sure isn't making things easier. I'm proud of you Suzanne. You make us 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you Jim..that warms my heart. You sure do set a great example!! It feels good to be home. And I have to admit...the "I don't care" feeling that I get from percocet isn't all that bad!!! I like your idea of mixing coco into it..that sounds yummy.
Charm, I like your idea of a chocolate Ensure!! Mmmm. That will be good.
Gabe and Jim, hope you are recoveries are going ok. I will have to check out your posts and see how things are going.
I think I read of post from Pete D and he was saying how gratful he is. I couldn't agree more. This life is crazy but the joy of my family, friends and the people here make me a happy person everyday!!!
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Suzanne
Nice to see you back on here already. Hope you are doing ok. Pain meds are a huge help!!!
Best of luck to all 4 of you who are recovering right now, Suzanne, Pete, Gabe, and Jim. Hope all is well and you all heal up to be better than ever!!!!
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) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you Christine. You are an inspiration...you have been through so much yourself and are always here for those of us who need support. I couldn't wait to get back and see how others are doing. As I always say, I am so happy I this site...I only wish I had found it sooner.
Yes...thank goodness for the pain meds. It makes life so much easier. I am also thinking about my fellow friends recovering. Pete, Gabe and Jim. We can do it!!!!
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi all,
I went for my follow appointment and my doc said it is worse than she thought. The pathology came back as severe dysplasia but the front margin is not clear. Also, she biopssied a small area on my left cheek (my cancer is the right of my tongue) and that was moderate dysplasia. Needless to say I am scared and not happy with these results. Also on my pathology report it says Keratinizing as an adjective. What does this mean? I was really hoping to hear the margins are clear..it's healing well and I'll see you in 2 months. I'm so mad and disapointed. Does anyone have words of wisdom?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well Suzanne, the 2 months makes it sound bearable. As tough as you are, you are gonna come thru this like a bear thru brush. You inspire me. Good luck Mam.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That is so kind of you to say....I really hope I'm ok. I see what others go through and I'm scared. I just want to wake up and this will be gone and I know that can't happen. You inspire me..you make it all look so EZ:)
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:)
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