Jim, you are always such a wonderful supporter and upbeat responder. I hope when I need some support, you are still out there, sending your good vibes, from your state of good health, which I know you are gonna have!

Mareika...I have so much to tell you, that I am glad we have until July to work on it! Since Jim likes to listen in, I'll just write here. Nobody has to read our long correspondence if they don't want to, but they are welcome. I hope others will write too.

Here is my story, ....the short form....went to the dentist regularly, though it was a new dentist for me, after my regular one retired. ...had tenderness by a rear upper molar, and some ear pain.....the dentist wrote a brief note: "note some pocketing, and pt. complains of ear pain." 6 mo. later...same complaint...this time he writes, "note some pocketing," and he cauterized the area. Two months later, I noticed a rough area on my palate, looked, and immediately knew I was looking at something bad. I went to him, and he STILL did not even consider that it could be serious. He cauterized the palatal area this time, not even re-reading his past notes...not even considering that this creeping area of funny-looking tissue on the outside of my gums, and on the inside of my gums, and on my palate could be anything but ANUG...What they used to call "trench mouth." He asked if I had been under stress, since this is what college kids get at exam time. (By now he has ignored...and cauterized my cancer two times!! he didn't even recognize it when it was staring him in the face!!) It was a few days before Christmas. He gave me a single antibiotic pill and sent me on my way. The next day I returned, concerned that it was more serious than he thought it was. He said he didn't have time to see me! ....trying to get out for the holiday...I insisted....and he didn't even look but sent me down the street to the periodontist, who took one look and said, "oh, no, this is not periodontal." He sent me across the street (small town) to the oral surgeon, who took an excisional biopsy and sent it off. Two days later came Christmas. Two days after Christmas the report was back: SCC. I said I wanted to go to MDAnderson in Houston, and he said I should go to a particular surgeon at LSU in Shreveport. I said I would go talk with both. We made the appointment for S'port, but we couldn't get in touch with MDA. I was on the interstate with my husband two days after New Year's, on our way to our first meeting with the Shreveport surgeon, when the cell phone rang, and it was the surgeon's nurse, saying that they ahd a cancellation for surgery the next morning, and did I want it. I was so shell-shocked anyway that I didn't know what I was doing. I ahd not even met this doctor, and I had not spoken with ANYone about this problem! We ended up taking the surgical time, turned around on the interstate and went home to get some things, and started over on our two-hour trip. We arrived late, of course, so my exam was rushed, and the pre-operative preparations were done after hours by people ina rush to go home. I had no prosthodontic consultation, nor did I know I should have had one. I had some amateurish molds made by the residents, I spent time in the car calling our four sons, who all moved heaven and earth to get there by morning, and at 7:30 the next morning, I was in surgery, not having any idea at all what to expect.

My surgery was beautifully and skillfully done, but this rush has plagued me. I was stunned and depressed and mystified, and confused and uninformed. I know now that the rush was not necessary, and that I should have had a consultation with the prosthodontist. Because I didn't, I suffered tremendously with the painful, make-shift surgical obturator.....unnecessarily. but I didnt know better. I couldn't eat, because my teeth didn't touch anywhere.

anyway....you won't have any of these p roblems. Your story will begin differently!!

I'm fine now, but it didn't have to be quite that difficult. Now this same surgeon wants to do a reconstructive surgery. He has just begun to do them, and he has done only 4 or 5. They ahve been successful, and he lectures all over the world on various topics of oral and maxillofacial surgery. But this casual treatment of me, the patient, is something that I do not appreciate, and I hesitate to get into it again.

I plan to have a consultation at M. D. Anderson to find out their opinion of surgery for me. It will be difficult to break from this surgeon, because I know it will change our relationship, so I don't quite know what to do. I am smarter now, and I know how to ask for what I need. But I didn't know that then, and I feel strongly that they did NOT take good care of me.

In fact, this same surgeon met me (very generous of him) at my prosthodontist's office recently, when I had a concern about an irritated area on my tongue. He examined that area thoroughly, and declared it ok. ..said everything looked good, and said he didn't need to see me for another six months. I asked if he didn't need to look at the surgical area, with the obturator out, and he said he didn't htink so. Can you imagine, not even looking at the area where a recurrence would occur?? and then telling me that he didn't need to see me again for six months?? I don't appreciate being treated so casually. I do see a good ENT here, so I will get examined, and I will keep my appointment with my surgeon just to spite him, but I am on my guard, and I don't like that feeling.

blahblah....that's enough ranting for now. I always get hot under the collar when I tell my original story. I am doing quite well now, after a shaky start.

XO

XOXO