#94760 05-01-2009 01:56 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I think the Drs are lining up again to see who makes Jim uneasy. 1st one called this morning and I had to ask what he sees me for. LOL He wants to do the colonoscopy routine but I told him to get in line. Then the Dr that does the scopes on my esophagus called and I will go for that the 13th, sorry Jackie I gave you the wrong date. That will be a nice nap. Now for the call from the Vascular surgeon informing me when he either tries the anneurysm or forgets it and I might have a decent summer for a change. LOL Damn cry Baby Jim
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: Apr 2009 Posts: 17 Member | | Member
Joined: Apr 2009 Posts: 17 | Good luck with all of those appts. and tests! I will be going through some tests as well soon I hope. I see the ENT on the 18th. Monday I see the dermatologist because now the other side of my tongue has white patches just like the left side when it started out. I have burning tongue and throat also. I sleep 14 hrs. a day and just can't seem to wake up, also chronic diarrhea. Hope they find out what's going on here. You sound like a real trooper and it gives me inspiration. It's tough to deal with drs and tests all of the time. | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I never wanted to sleep but after rads, chemo and surgery, that's all I want to do . I refuse to lay down and rest and just keep looking fo things to do. LOL Hyper kid here. I get tired of Drs and treatments but know they are what helps me keep up with life and the thngs I have to do. I never got diarrhea but just episodes with it. Nothing continous just at strange times and strange places. So far I have been lucky to be near a restroom. LOL I sure hope the 18th gets here soon for you to see your Drs. To me there is nothing worse than waiting. I think that's why I try to block Drs and appts. from my mind until it's time. I hope you have a great day and think of happier days. Later ... Jim
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It seems i forgot one Dr appt and it is in the morning That makes 6 and one in the wings waiting.The one in the morning is my Ocologist and thatg is one that we all have to keep. I had it on the calendar on the computer or might have missed.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jackie I will be praying for you on the 1th and take you into the sleep thy will be giving me for the scope and biopsies of my esophgaus. We go the same day. The 18th.
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: Apr 2009 Posts: 17 Member | | Member
Joined: Apr 2009 Posts: 17 | Good luck with all of your tests coming up. You really have a great attitude and positive thinking. I saw my dr. on Mon. and she saw that this thing is on the other side of my tongue as well. I can feel this tumor I guess in my tongue big as a chickpea so I will have it out, can't wait. I'm going to stop thinking about it until I see the ENT on the 18th. Have a great day everyone. jackie | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Dr appt. yesterday. I got the usual hugs and questons from the Drs staff and then went to the room to wait. The Dr came in with his usual Hey Jim, how are you doing.Then he checked my mouth and said your tongue is healed. Then he told me that him and the surgeon are trying to figure out a way to get rid of the pain or control it better. He gave me a week free and a script for Lyrica to try. I see the surgeon this afternoon for his update and opinion. Have a great day all.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | All the Dr did today after he check his surgery for the biopsy and gave me what he saw. My scars from his biopsy arne't quite healed yet and are causing me some pain, which I can handle. He told me I sure look great for all this body has been thru. He told me it's my attitude tha makes me look so healthy and young. My exercising and keeping busy with a garden and keeping my yard nice also help the youthful EzJim. LOL He wishes all his patients did as I do and they would all have better health. See this one in July and the one i saw yesterday I see in August. Report complete for now. LOL Give me an A on my essay will ya.
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: Apr 2009 Posts: 17 Member | | Member
Joined: Apr 2009 Posts: 17 | Great EzJim. You sound like you are a trooper for sure. Have a great weekend. | | | | | 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 | Congrats on a good doctors visit.
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) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well the Dr gave me Lyrica to try . This morning his office called to tell no to get the prescription filled as myh ins. won,'t pay for it. Thjey were going to call in a Script for Neuor something. Dang I forget the name. Typical for me. Have a great day all.
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: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Isn't it great how the ins companies know better than your own doc?
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It is fantastic and if you walked up and kick butt, they wouldn't know who did it. LOL You sure are right about how much they know. I can't ttake Lyrica anyway, I had the runs all day and was afraid to o anywhere afert i worked all morning in my yard. That stuff was wicked, it also made me dizzy as heck too.
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: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | It's prolly Neurontin. Works the same, older drug and less side effects. Maybe good news. Thinkin' bout ya Jim.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Linda , you are right and it is Neurontin, THat Lyrica they can keep. LOL It will save on my detergent and water bill. Nice to see you online.
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
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