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

It's unbelievable to me the way people have been treated or should I say mistreated by the medical profession. My husband was told on three occasions that he had a virus. How hard is it for the oral surgeon to take a biopsy. If you find the right one-it is done immediately. So much pain and suffering could have been alleviated for so many.
Sue

Sue, you are so, so right! I have made it my focus in the drive for awareness.....the necessity for our dental professionals to be better educated about the importance of a proper, thorough, SPECIFIC oral cancer examination of every patient, every single time they sit in their chair. Arghhhhh! If every dentist were like our Jerry Wilck, we'd all be in better shape. That's why we need to learn from those who know in order to teach those who don't. Jerry does all he can, but he is only one man!! The public has to be made aware of the risks, and the signs, and the procedures that should be performed on them by their dentists. They need to demand a good, specific exam. And they should demand a return visit if there is an area of concern. Too often, they are told that it should be fine soon. Not all of these lesions are painful, adn the patient dismisses them until treatment is more extensive. Sighhhhhh....It shoudn't be this hard to get it right, should it???

thank you EZJim for your kind words and thoughts. new to the board here and feel better already. i see from your sig. you have been thru so much, i hope and pray the best for you as well : ) marieka

i agree on the whole doctor front! i don't have a lot of experience with this field (but surely about to) but did go thru quite the ordeal in the infertility field (6 years, 1 ectopic, 2 surgeries, 5 IUIs and 5 IVFs!) this included a completely UNECESSARY surgery to remove my falopian tube (1) diagnosed by a previous doctor. when the new doctor (a way better one) went in - guess what, nothing was wrong with it! he even took photos to show me (poor guy probably feared the worst kinda lawsuit!) should have in retrospect gone for for first one, but so happy at the time, didn't do so. that whole area was all about the money and still is. everyone was a quota and a statistic. unfortunately there are many just like them everywhere. COLLEEN, if you GUT is saying don't go with him, your gut is probably right. although if you see from my first post, i went to the dentist 2 years ago (a new guy) he seemed good actually thorough, however he never presented me with gum disease (which i definitely had) but rather bonded my teeth with no explanation and never refered me to a perio (which he should have) to this day my mother is still cursing him, and well, who knows could have found this a lot quicker, who even knows if the guy even noticed it on the full set of exrays then... i have to say so far i got super lucky with the recent diagnosis and steps since. when i finally got to the perio on my own 2 years later (some guy outta my insurance book who was closest, like i said, real lucky) he not only refered me to the oral surgeon for biopsy, but then called the surgeon (unbenounced to me) to have it moved up immediately. after the biopsy/diagnosis, the same thing happened! the oral surgeon refered me to penn. penn gave me an apt for 6 weeks later - the next day penn called me back and asked me to come in 2 days later! mmmm, probably should have been good indication that this was not going to be so great. two docs in a row, truly going the extra mile, it was something! i am praying my new one is great as well. i am still waiting on my second opinon. i vacuumed today holding my damn cell phone face up! funny part is that the second opinion is from my second cousin once removed - GREGORY WEINSTEIN, who is the head of maxo-facial surgery at penn (ironically) he is also on the top 10 doc list. i am secrety of course hoping he will take me on, but know he primarily does malignancies. but at least i can get a super good second opinion (if i could get past his secretary!) my records got to him last wednesday, tick, tock (maybe i should call his MOTHER!) huh, feels good to vent on the doctors rather than on my tumor, perhaps i will sleep tonight?

wow colleen - i can see why you would rant, who wouldn't!!!
i cannot even imagine the kaos. i would get angry too, like you said it could have been so much easier on you. just posted regarding the doc thread - now i'm all hot under the collar too! will be surely getting back to you tomorrow (going on 11 here, work early tomorrow) talk soon and have a great night : )
marieka

Let's see.....you asked a bunch of questions...but first there are a couple of things that I feel strongly about ( You can see that I feel strongly about a lot of thing!)

1. To me, it was very important to be very open with my family and friends. I can see that you already do this. This is too big, and too difficult to be shy about. You will need the support of your husband especially, and your close family, and your friends, even in perhaps a larger circle than usual. I felt the need to make up an email list of friends that I felt cared about me, and I asked my son to write updates to that list until I felt that I could do it myself. To this day, people ask me how I am doing, and I appreciate it tremendously. They say that they are still praying for me, and I say thanks, that that must be why I am doing so well. Some say that they didn't know if they should mention my illness and surgery, that maybe I had forgotten about it and wouldn't want to be reminded of it. WEll, I do not want to be defined by it, but it doesn't bother me to be reminded (as if it is ever very far from my mind....but sometimes it is!!) I love being in someone's thoughts and prayers.

2. I encourage you to take your husband everywhere--to all doctors' appointments and all testing. Have him look inside your mouth. Let the doctor show him everything, now, and after the surgery. When they take out the obturators, have him look over the doctor's shoulder and see what's going on in there. He will have a new understanding and appreciation for what you are going through. Get yourself a small, bright flashlight, and a mirror that can fit into your mouth, so that if you need him to check something for you, he can do it. Let him "IN" and don't be shy about the changes in your body.

3. Never, ever let this affect your relationship, except to draw you closer by having you walk the journey together. It will do that if you'll let it.

4. Include your children as much as possible, and as much as is appropriate for their ages. Of course you will do your best not to frighten them, and to assure them that mom is going to be fine. But they have to know that you are going through a difficult time, and they have to know that you will have some changes, and some problems that you will have to figure out. A sense of humor will serve you well. You need to let them see you without your obturator, down the line. You will look different and sound different, but you can't hide from your children, and you shouldn't. Home is your safe haven, where you can let your hair down and take your teeth out!!

Give them some special chores to do, so that they can contribute to your recovery by feeling helpful.

5. You will likely have a period of grieving over the loss of part of your body. Remember that it is NOT part of YOURSELF. I had to keep reminding myself that the person I was and am was not changed.....unless I allowed that to happen. ANd I was bound and determined not to let this disease take from me more than it had taken. I was not going to let it take me and change me. I was not going to let it make me bitter and negative.

6. You might go through a period of depression. Let the doctor give you an antidepressant for a while. It will speed your recovery and your return to normal living. I didn't take anything, and I look back and see that maybe I should have. I cried lots and lots, at the drop of a hat. I had trouble getting over this, and it didn't have to be so difficult. (I keep saying that, don't I?!? That gives me the right to advise someone else to do things differently!)

7. Look for the blessings. There are many! Focus on them, rather than on your "loss." You will find new strength in yourself, and your husband, and even your children.

8. You are about to embark on a difficult journey, there's no question about that. But remember that it IS a journey. You WILL come to the end of it, and you will be ok at the end---different in some ways, but still you and OK...stronger and wiser, with a greater faith and stronger relationships. It's not how you would have wished to be spending the next several months, and it's something that, of course, you would love to not have to experience at all, but you weren't given a choice about that. All you can do is to manage it the best way you can. I had to keep reminding myself that, as bad as this is, many people have worse situations. That does NOT minimize the seriousness of your---or my---personal situation. But I learned also that there are many kinds of loss, and ours is only one kind--and a significant one, to be sure. Other people lose limbs, and children, and entire homes and lifestyles...

9. Whatever your faith is, get in touch with it, and let that be a source of strength for you, and for you and your husband together.

That's the sermonette for today. I wouldn't presume to write such things if I didn't feel really strongly about them all. As with all advice, certainly all of mine, take it or leave it....use what feels right to you.

XO--Colleen

Marieka..One question you asked was about getting care for your teeth now, before your surgery. I know it seems odd to be thinking of getting treated before they remove part of your oral structure, but the remaining structures need to be as healthy as possible, and it wouldn't hurt for your whole mouth to be as healthy as possible, so I would encourage you to get back to the periodontist for treatment. You will need your remaining teeth to be as strong as possible, so if you have gum issues, they need to be addressed now, and it seems to me that overall healing will go better if the rest of your mouth is also healthy. Remember, you will get to keep all of your lower teeth, and you will need your remaining upper teeth to secure your obturator, so you have lots of reasons to get yourself back to the perio. pronto!!

(You are going to be sorry you asked me so many questions, because you are going to get lots of answers/opinions over the next few days.)

XO

Marieka,
You are getting very good advice from Colleen, I would add # 10 to the list: get support for your husband. Going through surgeries and treatments can sap your mental as well as physical energies. Just going to doctor appointments and taking tests require much time and energy.
Do let your mother help out. She needs to be there with you as much for herself as for you. No matter how old we are, mothers still worry and want to take care of us. You are too big for her to take on her lap and cuddle in a rocker and you don't need a bandaid and a kiss to make you feel better but there are many other ways she can comfort you. It is very good that your husband is able to take off. Taking care of you, the house and the boys full time sounds overwhelming. He and your mother could work together and support each other. This is a great opportunity for her to enjoy time with the boys and would be a distraction for them.

Malka

Forgot to add this,
Instead of calling your cousin's mother why don't you have your mother call his mother??
Malka