| | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | The update so far.
The speech terapist really stepped up. She was walking out of the building as I was walking in so she got a full face shot of all of my swelling. As we started talking, I explained that I am in limbo. I have no appts. until the middle of April and I am really concerned that this is holding my healing back. She agreed. Long story short. She now has a list of my next Dr's appts. She will be emailing them (RO and MO) letting them know what she saw and what she suggest we start doing. I am to call the RO today and schedule a sooner appt. So we can get me refered to the PT clinic she works at.
And in a completely unselfish move. In the parking lot, before we got into our cars, in between Florida spring thunderstorms, she quickly goes over the massage techincs I should have been doing this whole time, along with a quick and easy month exerice that includes popcycle sticks that should help with my bite.
This lady is today my hero. I don't know if she will ever in her life need anything from me. But let me tell you now, buddy, all she will ever do is have to ask. I'm there. Period.
Oh, and the massages, I have almost got my teeth to meet already.
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Amy it sounds like you have a true professional in your corner that actually cares about people. You are so fortunate. The massage is interesting. I am having light massage and stretching in PT and it is starting to help. I am familiar with the popsicle sticks and have some in my kitchen.
It is always refreshing to hear positive comments about someone that went the extra mile to help. I hope the improvement continues for you.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It's too bad there aren't more people like her in the world. Some are so uncaring and in love with their selves, that they think the sun rises and sets just for them. Usually they are so far from reality that they could have pretty eyes, but blank. I like your therapist already and will never meet her. It's nice to go to someone you respect and admire.
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: Sep 2008 Posts: 130 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Just got back from the RO. Speech and swallowing therapy for me. I have been given a stronger pain med. Life is good.
Oh, and the best part. I don't have to see him for another three months. Things are getting back to normal.
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | 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 | Thats a great feeling when you hear the doc make your appointments further out. It means you are doing very well. Congrats. Hope your pain meds are working and you are feeling ok.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Amy I just have to say congrats from this corner. I'm mostly just reading in here tonite. I need educated more.
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
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
