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"OCF Canuck"
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"OCF Canuck"
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Yep, Josh...getting stranger by the moment - I took up guitar 2 years ago (my C-G change is causing me a fair amount of grief as my fingers don't want to listen to my brain). I found that playing also helped with the mobility in my wrist, which is totally back to normal. My voice is slightly lower than before and I have some issues with higher notes, but all in all not too bad. I'm practicing hard as I have a performance in 10 months at a charity event.

I found the same with singing, as they syllables (especially "s") meld into one another so the enunciation is a bit easier.

They took a bit more than half of my tongue, so I needed the graft. I told the surgeon to make sure they lasered it as I didn't want to feel like I had a hair in my mouth all the time, lol!

For PT at home, I found that lying flat on a bed and using a pole or broom handle over my head was one of the more helpful exercises - it also stretches out the back from general poor posture from overcompensating on the right side.

Love your dog, by the way - he's beautiful.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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Yeah I had trouble with chord changes for a while, but eventually it becomes pretty fluent, second nature. My voice is the same, but I also haven't started radiation yet, so it might very well end up a little different. Hopefully not, but there could be worse things than a changed voice. I used to be a pretty shy guy, but my freshman year of high school I played piano and sang in front of a full auditorium, around 1,000+ people. I was the only person at the talent show to get a standing ovation, it was a very humbling situation and certainly helped me get out that shy phase.

I'm sure I can look up some PT exercises online, it would probably be more convenient as I could go at my own pace according to what my body tells me. I don't know if it's from the swelling in my neck or not, but my left shoulder blade seems to stick out a little bit more than my right one now. I hope that goes back to normal.

Thank you! He is currently sleeping at my feet. He's a very loyal friend and I could never ask for more in a pet than what he provides to me. I brush him for a good 20 minutes a couple times a week, so his coat is very well cared for.


Josh, 24, don't smoke/drink

5/29/13 Biopsy
6/3/13 DX stage 3 HPV- SCC at BOT
6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches
6/21/13 PEG
6/23/13 Incision opened to drain infection
6/26/13 Discharged from hospital
7/22/13 IMRT starts
Joined: May 2013
Posts: 134
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I used to be a tenor, now a solid baritone. Also lost a bit of pitch control but that seems to be getting better so there is some hope. Honestly, I wasn't that great to begin with. I have encouraged my musician friends to record what they have written now. I had several songs in the works that I wish I had recorded BC.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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I'm a professional musician by trade. Guitar, mandolin, vocals. I'm worried about my voice. At this point, 10 weeks post Tx, I can sing but I'm definitely not where I was pre Tx. The surgery has made my throat a little smaller due to scar tissue. I won't know the ramifications for some time.

Playing is not an issue. I have weakness in my shoulder due to nerve damage but I haven't lost strength in my hands or forearms. I'm playing a wedding ceremony this Saturday (instrumental music only...no singing). It's my first gig since treatment. Unfortunately, I have a few gigs I booked for August that I'm going to have to cancel due to my voice not being up to snuff frown

"T"




57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Posts: 8,311
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Wow with all this musical talent we need to start the OFC Cancer Choir! I will exclude myself as I don't even sound good in the shower.


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.
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I was a tenor in my high school choir. I was one of only four people from my school to make it to regionals, and one of two who qualified for state. Unfortunately, I was also involved in theater and both the baseball and swim teams, so I had a conflicting schedule and I wasn't able to go to my state audition. I'm definitely not expecting my voice to be 100% the same, and I won't really be disappointed if it isn't. I find just as much joy playing as I do singing, and just as much joy listening to other people play as well. I think it's awesome to see all the musical talent on here.

David, I couldn't help but crack up at your comment, haha. Singing isn't always about sounding good. Don't get me wrong, in terms of being a performer it is absolutely about sounding good and all of that, but just for enjoyment, if it's relaxing and makes you happy, sing your heart away. I've gladly sang with tone deaf friends because of how much I knew they enjoyed it. I would actually purposely make myself sing not so great so not stick out.


Josh, 24, don't smoke/drink

5/29/13 Biopsy
6/3/13 DX stage 3 HPV- SCC at BOT
6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches
6/21/13 PEG
6/23/13 Incision opened to drain infection
6/26/13 Discharged from hospital
7/22/13 IMRT starts
Joined: Dec 2011
Posts: 126
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Posts: 126
Hi Josh,
Glad to hear you are doing well! Your story sounds very similar to mine - diagnosed at 24 with no risk factors, HPV negative, stage 3, hemiglossectomy,chemoradiation, the whole bit. I feel like being young and getting this type of cancer was actually somewhat of an advantage, as you can bounce back quicker!

Unfortunately, I used to love spicy foods as well, however I can rarely tolerate any spice anymore. I hate to be the bearer of bad news, but it was actually the radiation that caused my intolerance to spice, not the surgery. But I feel like my tolerance is getting better by the day! I live in New Orleans and I was able to eat crawfish this season, which I was so excited about.

Hang in there, feel free to send me a PM if you want to talk!


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
davidcpa #167599 07-09-2013 09:41 AM
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[quote=davidcpa]Wow with all this musical talent we need to start the OFC Cancer Choir! [/quote]

Could you imagine a choir of OC survivors? We would have the "all's good" section, the "hoarse" section (Think Tom Waits/Joe Cocker/Stevie Nicks/Kim Carnes), the "gloss" and "partial gloss" section (in which case "humming" may be the answer)and the "electrolarynx" section which would be very cool for techno stuff ;)~

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jun 2013
Posts: 49
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Joined: Jun 2013
Posts: 49
Hey Josh, your furry buddy is beautiful and the best part of therapy!!! Your pics made me smile - lots of love there!
Dogs rock!

Barbara (wife of Richard)


65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
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Posts: 22
Emily, that is crazy how our situations sound just about identical! While it does suck to not know "why" you get cancer, especially while you're so healthy and at a young age, I completely agree about having the advantage of being able to bounce back quicker. It's a double edged sword, really. On the one hand, getting it at a young age is horrible (getting it at ANY age is horrible, but I believe everyone understands what I mean) because of the reality that even with advancements in the medical field, nothing is guaranteed. Of course that doesn't at all lower my spirits in terms of being completely confident I'll kick it's butt, but I am a realist and I do understand how serious it is, I just don't focus on that aspect. On the other hand, our bodies can handle more and recover much much faster. My age was the main reason I wasn't given a flap, they said my body is strong enough to heal well without one. Also, there are worse things than not being able to eat spicy food anymore. I would learn to deal with that. I will definitely take you up on the PM offer. =]

Fishman, reading that provided me with the best laugh I've had in a while! Thank you for that!

Barbara, I completely agree with you! I love my girlfriend to death for all she's been doing for me and how much she's been here, my family as well. But that alone time to relax when it's just me and Timber is time that really just lets me rest, all while I can sit back and reflect on things and still have company and relieve some of the built up stress. I actually wrote a paper for my college psychology class about the effects animals have on people, and there are studies that show so many positive effects, such as simply petting an animal releases endorphins that help you relax. There was also another study I focused on that talked about how kids with autism who generally don't connect with anyone and hate being touched, find ways to really connect with dogs because the dogs love unconditionally and they show such patience with the kids. A lot of people highly underestimate the value of having pets.


Josh, 24, don't smoke/drink

5/29/13 Biopsy
6/3/13 DX stage 3 HPV- SCC at BOT
6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches
6/21/13 PEG
6/23/13 Incision opened to drain infection
6/26/13 Discharged from hospital
7/22/13 IMRT starts
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