hi, i am a 39 year old wife and mother of two terrific little boys. i want to start by stating that i do not have cancer, but will be undergoing a total maxillectomy in july. i found my way to this site after weeks of up all night searches for just anyone to talk to about what is about to happen. the only way i could even find any info on my upcoming surgery was thru oral cancer sites, as there is very little infomation on my tumor. after not going to the dentist for a couple of years and ignoring a lesion (which seemed to me nothing but an irritation on the roof of my mouth from my daily regimin of captain crunch cerial) i had developed gum disease and subsequently two loose teeth. my fear of the dentist probably would have kept me away longer, but the loose teeth thing freaked me a little. so finally, i went to a periodontist and within 2 days i was forwarded to an oral surgeon and biopsied. a long agonizing week later the surgeon came back with "pleasantly surprised it is not a malignancy, as i expected - but concerned about what it is." i was dianosed with an ameloblastoma, a rare, usually benign bone tumor of the jaw. in my case the maxilla, which is even more unusual as if it weren't rare enough. he did not offer much info, except that it was disfiguring and that it would have to be taken care of. i was sooo grateful and incrediably thankful it was not malignant and rushed home to tell my half-crazed family and friends. then of course, got on the internet. the more i found and found out, the scarier it got. by the time i met with my new maxofacial surgeon i already knew the grim facts, just didn't know til after tests how much jaw would be lost. turns out it will be 3/4 of the maxilla and the bottom of the sinus cavity, much more than we thought and we were stunned. i remain still stunned weeks later. i am fuctioning but still just can't get my head around it. i met with the prostetic doctor this past week and got the molds done and heard all about my upcoming months and issues. left even more scared and concerned about speech, swallowing, eating and the like. she, like the surgeon, totally downplayed reconstruction options with mentions of reoccurance. first i heard about how it would be many many surgeries and again back to prostetic issues and painful recoveries. also added was not closing the sinus due to the flexibility of the graph would forever compromise the prostetic. since then things seem even more bleak to think that even reconstruction is not such a great option and was told that most do not opt for it. i still cannot get over a couple of loose teeth can lead to this and feel like i am walking in some parallel universe. i am terrified about the surgery itself and what to expect, waking up, the pain, eating, cleaning the wound and the long term effects. it just seems so enormous to me and even makes the way past 6 years of infertility treatment look like a picnic (afterward we were blessed thru adoption.) i guess i thought the trying times were behind me. my friends and family are being forever supportful, but of course, don't know what to say. i was hoping that even though what i am going thru is nothing compared to so many here, that i could connect with someone who had this same surgery. would like to know whatever you are willing to share big or how small. i feel if i can get some feedback on the true reality of it, perhaps i can accept it more and maybe even breath...thank you.

Dear Nervous,

Of course you are terrified! I want you to take a deep breath and then I want you to know that you are going to be ok. I am one of the few....but not the only one....on this wonderful site who have had a maxillectomy and palatectomy. Mine is not as extensive as yours might be, but I have an acquaintance who has had removed almost as much as they are discussing for you.

Do NOT feel that reconstruction is not an option for you. At 39 you have plenty of time for a conservative waiting period to check for recurrence. My acquaintance here in Louisiana has had reconstruction for her non-malignant tumor.

I am sorry that you have to go through this, but I think I can help you with some questions. Feel free to write me here, or to email me at [email protected] . I don't get to the forum every single day, but I do check email several times a day.

I have lots to say, but first I want you to know that there are others on this site who will also have advice, so I want you to stay connected here, as well as emailing me.

You are fortunate to live near some wonderful medical advice in Philly, as well as some of our most generous forum members.

I hope to hear from you. I do wear a prosthetic, having lost about a third of my maxilla--on the right--and about a third of my palate on the right side.

You do have a challenge ahead, but at least you do not have the added worry of malignant cells metastacizing to other organs. That's something to be thankful for! You are going to be ok, and there are many talented oral professionals who can help you regain function through good surgery and good prosthetics. Have hope! You can do this. Please write!

XO--Colleen

I have a friend with the same type of tumor you have. Upon meeting her I didn't even realize she had had such extensive surgery. She looked wonderful. I won't downplay the experince she had but you'll come through it especially if you try to stay positive. My husband had reconstruction following a partial mandibulectomy and looks great also. He had the bone from his leg grafted to his lower jawbone. The plastic surgeons can do amazing things today. Stay strong and keep coming to this board-the people here are truly inspiring!
Sue

thanks for writing me, i so appreciate it!!!! it is so nice and comforting to hear that i am not alone! i will be going to university of pa hospital and lucky that its only 20 minutes away and from what i hear awesome for this! currently waiting on my second opinion and have been glued to my cell like a lunatic (darn holiday!) i have so many concerns and questions and hope you don't feel bombarded! haven't been in a forum for a long time (since my infertility days) and know sometimes things don't necessarily want to be relived. so truly, if i overstep, let me know : ) firstly of course, the surgery. i read on some sites horror stories which certainly didn't help me out and was wondering how you felt upon awakening, could you swallow, breathe, talk? i know the first prostetic (1 week one) will be in there but wonder about swelling. when i had my little biopsy i had unbeleivable pain for the first 2 days. i swear most of it was total nasal pain and general gum pain from my gum disease. the wound pain was not so pleasant but not nearly as bad as the rest of it. my husband ended up calling the surgeon at 9 p.m. as he was ready to bring me to the e.r. i am hoping it was a fluke, but of course worried. obviously the biopsy was on the pallette, yeah, close to the sinus' but not nearly as close as we are about to get! i assume i will get lots of drugs i am hoping i can knock myself out for a little bit : ) docs also told me i would be eating relatively quickly and finding that kinda hard to imagine too. were you able to, and getting even more personal, did it feel different, or taste different? lol, just lost like 23 lbs. since new years' - officially off my diet now! doc also said only a couple of days in the hospital, not surprised by this since they rush everyone out these days. was your stay similar and how was homecoming. my mother wants to spend 2 weeks to help with the family and all and well, although she is a great mom, she makes me pretty stressed in general. my husband can take a week and my boys (4 and 7) will be at camp which i will be extending hours for that month (8-6) so i guess i don't think her help is that needed. am i wrong??? doc stated one month recovery, the first two weeks the worst of it. from that point all everything is about life adjustments. read articles about cleaning the area and already freaked and grossed out. i am sure it will become a way of life, cause lets face it, it has to. the only grateful thing with the prostetic doc was that appliance #2 would be 24/7 for up to 6 weeks. it won't have teeth (not the best surprise) but i won't have to deal with the wound yet (outweighs the teeth!) you would think with 2 boys (dirty, so gross little guys) diapers, virus' etc. this would not be an overwhelming factor, but somehow it still is. i keep imagining the first time i look in there and my heart sinks. i keep reminding myself about anyone losing a limb, sure it felt the same way at first, then they put on their appliance and went to work! did you need a lot of adjustments at first before healing was complete? how hard was it to adjust to then and how is it today? are you cancer free or still in the midst? i know i am so lucky that it was not malignant. i have been a smoker since i was 15 and now i will be quitting, another thing to add to the list of things that suck : ) i have read thru a lot of posts and oh my gosh, i just cannot imagine. there are so many brave people out there and hope that i can take their example...
thanks again for getting in touch, looking forward to hearing from you (happy holiday!) marieka

Marieka, I will email more answers, as I know that most here are not interested in the nitty-gritty of maxillectomies, but as for the issue of reconstruction, I don't think you have to give up on the idea. Yes, at first it would only make sense to make the best of the obturator.....and probably for several years..to be certain that they have removed all of your tumor. Even if it isn't "malignant," it might recur, due to some small molecule left behind. They can surely be more vigilant if they can look directly. My surgeon said the same thing, but at one year, he was talking about reconstruction, saying that actually, the PET scans today are so sensitive that a PET/CT would detect a recurrence before he could see it. I haven't had reconstruction, but I am seriously considering it.

It will, like Sue described, involve the use of the fibula from the lower leg, along with tissue, skin, and a blood vessel. These are installed into the mouth, with the bone forming a new maxilla, and the skin and muscle forming the roof of the mouth. The blood vessel is threaded into the neck to connect with circulation there. You don't need to know more about that now, but don't feel that you will never be able to have that done. I can't see why, at 39, anyone would tell you that you couldn't eventually have that.

In the meantime, I have spoken with a specialist in prosthodontics at Baylor Dental School in Dallas about ways to secure an obturator in the absence of the maxilla and palate, though I have not lost that much structure and am able to secure mine with my remaining teeth. He told me (and showed me an article showing photos of someone JUST LIKE YOU who had had this done, and you can too, very soon after your surgery) that since this patient had no teeth to retain the obturator, he installed implants into the remaining bone in her sinus cavity, either the pterygoid bone or the zygoma. These implants served as clips to hold the obturator in place, and she looked great! This is something that should be able to be done as soon as you are healed.

You said something about not being able to have a soft repair....From what I've read, he's right about this. If you close the palatal opening with only skin, you will not have a way to secure the obturator, so you can't have a dental appliance.

I tell you these things, even though it is premature to discuss them, so that you'll know that there are solutions out there. Things are not as bleak as you feel now that they are. The field of prosthetics performs miracles every day in giving people back structures that they have lost.

You are correct about so many here having dealt with so very much. It is humbling. That does NOT, however, diminish your sense of loss over your own situation. I think that we all feel grief and a sense of loss over these structures we give up, and the functions we have to adapt, but I promise you that you will find blessings in this experience along the way. I won't say that it's an even trade, of course, but there will be blessings that will help you through it.

It sucks, for sure, but since you don't have malignant disease, I don't suppose that you will have radiation or chemo? Do you know if that is a possibility with your kind of tumor?

It's interesting, isn't it, how they can say that your tumor is not "malignant," when there is nothing "benign" about it!! It's bad, and it has to get out of there!! But at least you don't have to worry about it going into other vital areas. That's something to be thankful for!!

You will make some good friends here, and those who have come to care about me and my situation are now among the blessings I count. You will learn lots about yourself, and your husband, and you will find that your friends, if you let them, will do anything for you, and will be more caring than you ever could imagine......IF you let them. IF you invite them to share in your experience.

I had NO time to prepare or to worry. I knew absolutely nothing before my surgery, so I think that there must be some desirable compromise between having time to prepare and having too much time. Gather all the information you can, and at some point, after you've done all you can to choose your medical personnel carefully, the time will come for the Journey to begin, and at that time, it will be almost a relief to finally get started, .....a beginning that will be the first step in getting it over with and getting back to normal....even if that is what we on the forum call a "new normal."

You will have accommodations to make, but you will do much, much better than you think.

You don't have a choice about it, of course, so at least you don't have to struggle with that decision.

I'll email you my telephone number, and you are welcome to call if you wish.

I wish I could make this go away for you, but I can't, but I know that I can help you through it, and give you some information that I hope will calm some of your very natural fears.

I mentioned an acquaintance who had much of her maxilla and palate removed. She has had reconstruction, and you would never ever know she had had surgery....not in her appearance or her speech. It will not happen overnight, but the reality is that there will be a solution down the road for you, so never give up that hope.

I'll email tomorrow. Ask anything you wish. I'm not shy. If I can help you, it would be a blessing to me.

XO--Colleen

THANK YOU!!!! COLLEEN AND SUE, your emails have REALLY made me feel better. i cannot stress enough the comfort in knowing there are people to talk to who truly understand! i mentioned to my mom last night finally finding this site and she was just so happy for me (and prob. relieved as she has run outta things to say at this point : ) The reconstruction options brought up are such a relief. when you go on-line its just a mass of terms, flaps and such, most of which i cannot understand (at least yet) and i don't need to yet, but it helps to know the future options. i know now that the down-playing regarding reconstruction (when i was asking the docs) was really because of the recurrence, temporary, but not forever. not sure why i didn't piece that together earlier, probably the cloud i have been in. knowing that the options are there definitely helps when i think about the long term! yes, ameloblastoma does have a recurrence rate. the doctor did not get into it yet (next visit) but from what i can gather around 24% after the surgery. i am not sure how long is considered a safe-zone to consider reconstruction (next visit) some sited 5 years, others 8 (like i said, a mass of info, could and hopefully be much less?) no chemo or radiation, we had asked about it as well, in hopes to perhaps shrink it, so much would not be lost. surgeon said that it is "basil" cell oriented and that it would not be very sucessful or responsive. many articles compare ameloblastoma to skin cancer (obviously without the cancer!) the cells they believe could have been there since infancy as they should have created tooth enamel and for whatever reason (big medical mystery to date) they didn't and lay dormant til recently. other studies suggest trauma can cause them which is even more interesting because as an infant i was actually electricuted in germany (where i was born). after of which, i had several reconstructions as a child and they did an awesome job. if that wasn't trauma to the mouth? anyhow, sat there at the time wishing the radiation, but after learning more from this site and others - grateful to say the least not necessary. also wanted to clear up this "total" maxillectomy diagnosis. apparantly, total does not mean total (but according to surgeon, over the midline they call "total") in reality, i am losing approx. 3/4 of the maxilla (a 9 tooth span and above) from the right "eye-tooth" (i think, the one to the right of the front big tooth) thru to the end of the left top line. i apologize i should have been clearer and sorry to COLLEEN who went the extra mile (you are AWESOME!) so yes, as far as the prostetic i will still have natural teeth to support it thank goodness! AGAIN, sorry about the terminology! THANKS AGAIN and look forward to learning more. the more i learn, the more i feel in control of what is about to happen and although still pretty depressing, it really helps. please too, i would really like to hear about your issues as well.... marieka

Dear Marieka,

I am elated to hear that "total" is not really total! That will make a huge difference in your being able to manage an obturator appliance until they clear you for reconstruction. You might find the appliance satisfactory and choose not to have the surgery, though at your age, and with advances being made every day, I'll bet that down the line you will opt for it.

Your amount of loss is EXACTLY the same as that of the person I know who has just completed her reconstruction. She had a tumor which was invasive but not malignant also.....I don't know the type. It's been a long road for her, because she went for a long time with just the obturator, and then attempted a reconstruction by a method no longer used, and it failed. She had the fibular graft procedure by my own surgeon, and now she looks great.

You are fortunate in ways that I was not: My surgeon's office scheduled me for surgery so quickly that I did not have a pre-surgical consultation with the prosthodontist, and that has plagued me ever since. You will be much better prepared with good molds for your appliances. The only molds I had were done by the residents the night before the surgery, and my surgical obturator was very make-shift. It was a shame, because it fit so poorly that I couldn't close my mouth, and my remaining teeth didn't even touch, so I couldn't eat, and it hurt like crazy...NOT from the surgery, but from the poor construction of the appliance. I didn't know it didn't have to be that way, and it was a long time before I could eat. I lost 20 lb. in the first two weeks, and 5 more later (I needed to lose them anyway, but that was a hard--and unnecessary way to do it!)

You will be much more comfortable, due to proper preparation and immediate professional involvement by your prosthodontist.

You will not remove that first obturator. You will have some surgical packing in your sinus cavity. This appliance is designed to secure that packing in place for a week or so. When you go back after about a week, they will remove that obturator, which is more like a plate than the next one will be, and remove miles of gauze packing material. Then they will place your "intermediate" obturator. I didn't remove mine for a few days, but I was instructed to do so. When I finally got the courage to do it, I got scared and couldn't get it back in, and my sister had to take me to the local oral surgeon (not my own surgeon, who was two hours away) and he showed me how to get it in.

Your instructions seem different, since you say you are to leave yours in undisturbed for 6 weeks or so. By then, you won't be quite as spooked as I was, though of course it will take some getting used to. You'll get the hang of it pretty quickly.

Interesting history and interesting ideas about how your tumor began..... You'll never know, of course, just like most of us, with our SCC tumors. I did smoke in college, but that was 37 years before my cancer appeared. That's a stretch, if you ask me. I drink alcohol only rarely, and I even got tested for HPV and was negative.

I am soso glad to know that we are helping you to feel better. It's still going to be a challenging time, but part of my difficulty was the lack of preparation and the breath-taking surprises that kept coming my way. I was wide-eyed and terrified, and though I have had excellent surgery, the presurgical preparation and post-surgical support have been disappointing. It makes a huge difference, and when I hear of people who are choosing doctors and feel that they don't get enough attention or that their doctor doesn't have patience with their questions, I encourage them to keep looking. That attention, that willingness to help the patient prepare for these major changes in their lives, is part of the treatment. If they themselves, or a primary member of their staff isn't willing to do this, then they are not giving their patients total care.

More later...

XO--Colleen

By the way, my "hemi-maxillectomy" begins after my eye tooth on the right side and extends to include the rest of the maxilla and teeth on that side. I have lost the bone containing "only" five teeth (would have been six if the wisdom tooth had still been there.) I have also lost about 2/3 of the palate on that side, though not quite to the midline.

You said that your intermediate obturator will not have teeth. I don't know exactly why not. They might not function well..or at all....but cosmetically it seems that you could have some. Add that to your list of questions. My first one didn't have teeth either, but it had a build-up of material that simulated teeth and filled the space that teeth would have filled. This was on the side, not the front. Even if the fake teeth are not perfect or expensive, maybe he can construct that appliance to include some. I sure would ask!

hi again : ) could that be a smile? your advise and past experience is awesome to hear! yes, the 2nd prostetic has no teeth. it begins right after they take out the 1 week one and will up to six weeks (asuuming its the inter one). the no teeth reason given (be sure i asked pronto!) was that it weighed the appliance down during the healing process, causing further issues of fit. in addition she added that there would be many adjustments during this period. my opinon is that the protocal with the teeth added on is probably a pain in their ass. after the up to 6 weeks i get the 3rd which will have the teeth and after the mouth is healed entirely the final one. final as in a new one every 6 or so years. do you find that the appliance has harmed any of your anchoring teeth? i read articles about this prob. at 3 a.m. but wasn't sure if it was due to all the pressure of supporting it, or if it really pertained to the teeth condition after chemo and radiation? my teeth presently are not in the best shape. like i said earlier, gum disease is what brought me there to begin with. i think i am pretty sure i should go get cleanings or whatever they do for that asap (though i so don't want to) as i would assume i want everything in best condition as possible? i did ask prost. doc this and she said it didn't matter. god knows how many cavities i have (as soon as the perio saw the lesion he was DONE with me!) he never even let me know what else showed up in all those x-rays! funny how i was dreading the whole gum scaling thing and nervous about losing those 2 original loose teeth (lol, could be so lucky!) mmmm, at least there is a whole lot he won't have to bother with! i had asked the prostetic doctor what do you like do with the dentist afterward and she said you take it our for work? that sounds, well, like nasty and somewhat crazy. have you had any fillings or anything done since? just wondering... sounds like your friend is doing well, is it done with one surgery, or several like mine had mentioned? i imagine, it must be like starting over but with a much better ending.. i am glad and relived to hear it is something that the future can hold. i cannot believe how quickly you had surgery! i would have gone crazy. at first it sounded like it would be rather quickly for me but i begged for july. literally begged (was crying at that point!) june we have the adoption picnic, by boy's birthdays, shore and a famiy cruise. i am going to add in whatever else i can for sure. i cannot imagine without proper consultation how confusing and overwhelming it must have been for you! even with all that, it is still so much. you must be very brave, not just for getting thru the process, but also for having such a great outlook now. so glad that you are out there : ) talk soon!

I just want to say, whatever you have and whatever they do, there are a klot of us that like to read post on here. I don't know what you will go thru , but you have my prayers. It can be frightening anytime they work on you. Good luck.

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

Marieka,
I'm confused. I thought you already were being treated at HUP. Why isn't the one doctor at HUP calling the other and getting you the appt. What dept is your doctor in and who is doing your surgery, dental or otorhinolaryngology? Since you do not have cancer, they might not give you an appt as quickly as some other patient, but I have always been given an appointment in another dept within a few days. I don't think any of the secretaries in otorhino ever answer their phone unless it's another physician calling.

I've been at patient at HUP since 1997 and have met your cousin although he was not my surgeon. I also spent a lot of time in the dental dept in 1997. I'm curious as to who your doctors are. Since we are not supposed to post doctors names on the board, email me the names of who you are seeing - [email protected].

Tkae care,
Eileen

Malka, you are soso right about both help for the husband, and allowing Marieka's mother to help.

My personal experience was this: I am older than both of you most likely, and all of my children are grown. My husband is a physician, and he is a loving, helpful person. But he had to go back to work at some point after my surgery. My sister came to stay with me. It was the perfect solution. I got dressed every day, and she knew just how hard to push me to eat and move. She also knew when to be quiet and let me doze, and when to suggest an outing, and when to try to think of something that I might enjoy eating or drinking. She brought her knitting (making me a prayer shawl, weaving her prayers for me into it while I slept!) She took me to the local doctors when I was scared, and we had a little outing every day. She greeted guests when they came. She came a couple of days after I came home from the hospital (I only stayed in the hosp. a couple of days...maybe not quite long enough.) and she stayed for 10 days. I cried when she left, though I was ready to take care of myself by then. I don't think I would have wanted to try to take care of myself during that time, nor would I have been able to care for children at all. And for your husband to try to do it all would really be stressful for him. You would find yourself trying to protect him by being an extra good girl and not being any trouble. I think you should ask your mother to come and share the duties. You can either set yourself up in the middle of the action, or put yourself in your bedroom away from things. I always liked to be in the middle of things. You can get a baby monitor to call, or a bell...or a cell phone. Give your mother the gift of allowing her to help, and give your husband some support by not allowing him to have all of the responsibility. You will perhaps need to go back to the dr. during this time....or you might think you do...and what will he do with the children?? (How old are your boys?)

Yes, let your mother come, by all means! If everybody talks frankly in the beginning and gets some things understood, it should go fine. This is a time when you have to let go and trust other people. They love you , and they'll do fine.

thank you!!! i am saying a lot of that lately and to so many! no matter the words, they are not efficient enough to express just how grateful i am to have found such caring people out there. to know i am not alone and to be able to get such wonderful advice and information is just amazing...

malka - thanks for posting and for your advice : )
hope this finds you doing well?
the whole mom thing has somehow seemed stressful to me but feel i should use my energy elsewhere. starting to think i may need her a lot more than i thought! plus, it never occured to me til the other day (in my new-found haze), that my hubby might really need her too. i did actually ask him (after i was crying how i would want to be alone - new found haze and depression mixed in) and instead of replying the way i thought he would, he said he wasn't sure? never expected that and i think for the first time since this started i realized, i am not the only one who needs some support (like you said). he may not be able to be strong enough for just everything and everybody (like the rest of us!) god knows he will be stressed and worried as well. so anyhow, even though my gut still is saying NO MOM, i think the big picture may have her in there after all. our little guys are hard enough already : ) please come back and talk again soon!!!

colleen - your list is AWESOME! keep it coming!
i think although we have never met - we have a lot in common in terms of our "thinking". i am very open myself and so far have not had a problem talking about it, of course, well, hasn't actually happened yet. i suppose, time will tell the aftermath. my husband so far has been wonderful and at every appointment. he will have a lot to handle for a bit but has always been thankfully great with the kids and the kitchen, so at least he won't be too shell-shocked. the only thing i guess freaking me out on the list is the aftermouth of my mouth. i can't help but think about it and even though i have seen photos on-line of course it is not the same. i am still mortified and dare i say disgusted. even though it will become a new part of my life and daily routine, i still cannot grasp it. i never even thought about him checking it for me, were there worries in the beginning? i did see here and there concerns about cleaning it right, infections and whatnot, was it hard for you? i am sure it had to take a lot to get used to. since you are farther down the line than i, how overwhelming was it and is it today? keep hoping it will be like all things unknown - you have to do it, so you do and get used to it. most of the time it isn't as awful as you imagine it, here is to hoping! i really loved your list, it was so wise, realistic and compassionate. thanks is NOT enough : ) don't worry about swarming me with info, i need all i can get to prepare and lucky you are out there to prepare me!!! marieka

COLLEEN, lol - you were writing while i was writing!!!!
i like the bell idea, finally a time i can actually get away with it : ) i know she is dying to help, perhaps i don't even have a choice but suppose i will give it a go. my boys are 4 and 7. they do know mommy has a boo-boo being taken out and was soooo upset when my older boy, ben, asked if i was going to die! i have been working hard since then to reinforce that this was not something for him to worry about. i am sure he picked up things, not to mention the feeling of our house in general and that makes me beyond sad. i was even thinking for now on in (besides quieter more private conversations) to perhaps not let him know when the actual surgery is until i am done in the hospital to alleve his worrying and let him enjoy himself at camp. the thought of his fear is far worse than my own. i am worried how this will effect us all and maybe my mom would be a good distraction (at the very least the house will be clean!) anyhow, will need someone to hand over the good drugs!!! my next appointment is the 11th with the surgeon and will get my surgery date then. feel like i am kinda living in short term. want to cram in as much summer as possible beforehand - not to mention eating everything i love... talk soon, hugs, marieka

MALKA! JUST SAW THE COMMENT ABOUT MY MOM CALLING HIS MOM - ACTUALLY IF I DON'T HEAR BY WEEKS END GOT ONE BETTER. GOING TO HAVE MY GRANDMA CALL HIS MOM, BETCHA THE PHONE WILL BE RINGING THEN : )

Marieka--I'm so glad we are helping you to face this surgery. It's a big deal, for sure, and the more info. you get, the better prepared you will be to cope. I can tell that you are spunky, and you will do fine. I wish you didn't have to go through it, but maybe this can be your biggest life-challenge, and in that case, take it!!

OK...Starting at the beginning...As I said, I had little preparation, and no prosthodontist consultation, so I went in "bare." We arrived into Shreveport for a 4:00 appointment. 5 min. later, he knew what he needed to do (I'm a pretty classic case, I suppose) and at 7:30 the next morning I was in surgery.

(There were some sagas connected to the hospital stay too, but that's another story....such as their not being able to tell my doctor sons where I was after the surgery. They had trained at this hospital and they ranted and raved until somebody found me in the burn ICU...)

You will not have a neck dissection, so I don't need to talk about that. You will be swollen, and bruised....not a pretty sight for sure. You will have the surgical obturator installed....probably wired or stitched in in some way. You will have gauze packing in your sinus cavity, and I suppose that your nose will not be open because of it.

I could talk. I was afraid to drink or eat. I didn't know what had been done in my mouth and what the current situation was. I was afraid of choking. I had an iv, of course, so it wasn't vital that I eat and drink, but nobody came and taught me that it was ok. The make-shift obturator was so painful, jammed into my jaw joint, that I had difficulty moving my jaw to talk and , later, to eat. You won't have that same problem.

My surgery was on a Wed. morning, and I was released on Friday morning......a little too soon, probably, but all of my family are doctors...my husband and three of my four sons...so I guess they felt that I would be ok. I was ok, but nobody made certain that I could swallow....and I couldn't because I was afraid.

Do not be afraid to swallow, though you have to do it carefully at this point because of your nose being packed. It's tricky. TAke little sips.

Here's a suggestion that I still use: Get a small mister bottle.like for plants or laundry and fill it with clear water....Keep it handy for spraying into your mouth and throat. It gives you a bit of a drink without your having to actually swallow, and it moistens all your tissues and feels good.

Another suggestion: Get some Biotene mouth wash. It is made for dry mouth. Breathing through your mouth will make it dry and bothersome. I put some Biotene in another small bottle....like one you might carry hair spray in your purse in, and use it often..I still do....and distribute it around my mouth. It helps with the dryness.

Another suggestion: put some vaseline (or, my favorite is Mary Kay extra-emollient night cream...like fragrant pink vaseline) on your lips before surgery. Your lips will take a bit of a beating. Keep it handy at your bedside for after surgery.

(I still keep these three things by my bedside, and I carry another small bottle of Biotene in my purse.)

Another suggestion: Tell the anaesthesiologist that you want some anti-nausea medicine in your anaesthesia. I tend to get nauseated after general anaesth., and sometimes they automatically add the anti-naus., and sometimes you have to ask for it. It is expensive, I'm told. Just say you need it. You don't want to get nauseated.

An observation: As long as I was on the narcotic pain meds, my lips felt oddly numb/chapped. I couldn't make them comfortable. I've noticed this before. As soon as I changed from the strong stuff to non-narcotic pain meds, my lips felt better.

So...I could talk..and I had to remind myself that my body was fine. I could walk fine, though I kept forgetting it! The first day you will be groggy and hooked up to the iv.

The pain is not the same as belly surgery pain, but there is pain, of course. This is not small stuff! So do NOT hesitate to ask for pain medication and to sleep. It is not your job to entertain visitors!

When I began to try to swallow, I had someone stand near me in case I choked. I took very small sips, and I found that using a straw was easier than trying to transport liquid from the front to the back of my mouth. It was several days before I had the courage to try, and then I was still a chicken.

The truth is, it is a little easier to swallow at this point than later. Your mouth will be totally covered, and no food or liquid can "get lost" anywhere. I worried about that.

One thing to be aware of: Your jaw will likely be in a state of stress and will not want to open very wide. Ask your surgeon when you should begin to work on getting it open more. You don't have to worry about it at the very beginning, but after several weeks, you need to exercise your jaw to be certain that the tendons don't scar down and prevent opening later. At first I had to use a flat baby spoon to place food in my mouth, but I worked hard, and it got better and now is just fine. I still stretch my jaw opening a number of times a day.

At home, I was still sleepy, but I could talk and enjoy being around others. I didn't want my grandchildren around, however. I didn't have the energy for them.

I could talk on the phone, though my bad obturator made my mouth hurt after talking a while. People were amazed. Me too!

I came home on a Friday, and my sister arrived on Monday morning. I dressed every day, and we went on short outings every day. I was talking just fine...went to show her my church, and visited an elderly friend...to the drug store.

The next Tuesday, nearly two weeks after my surgery (a little too long) I returned to the surgeon for the next stage of the saga....the removal of the surgical obturator and the packing. I'll start there next time.

The rest of you wonderful forum readers, if you have read to the end of this, you deserve a prize! I am writing things to Marieka that I should email, but on the chance that it might help someone else, now or later, I am just going to post my personal stuff here. Please feel free to ignore it if you wish!

XO--Colleen

thank you. tearing up a little over the reality, but need to know. funny how the littlest details in life can suddenly seem so important. the helpful hints are terrific will be stocking up for sure (and totally sure no way i would know on my own!) will absolutely stay tuned and so appreciate the continuation....
off to bed (11:45 here) work tomorrow and payroll to do (at least i pay myself : ) nighty-night, marieka

Marieka, I had worried that too much information might create problems. I think I'll give you a break. You have asked some very good questions, and I will answer any that you really want to know about, but I don't want to give you things to worry about. I want to comfort you. I can't, however, do what I really want to do, which is to make it go away and take away the reality of it. I just want to assure you that you WILL make it through, and that there ARE ways to cope with the details.

You've asked some good questions about the future which you don't really need to know about now, but if you really want to know, I'll be glad to answer. I presume that, since you are wondering, you want answers.

Let me know what you most want to hear about.....what you need now to feel better prepared. Too much information might just be upsetting and overwhelming. I don't want to do that to you!!

Let me add one nice note: Before my surgery, I was a singer..not professional, but a good, trained amateur. I sang at church, doing some solo work and helping with the children's choir. I had just established a city-wide audition-only chorale and we had had our first concert when I had my surgery. A nerve was damaged in my neck that damaged my voice, and I thought I would never sing again. I was bereft! I DO sing now, not quite at the same level, but I do well, and I cantor at church, alone, and I sing some solos, and I am loving my music again. One of my jr. singers looked up the other day and said, "Miss Colleen, you have the most beautiful voice I have ever heard." I know that she isn't a true judge of musical talent, but it meant the world to me to hear that!! I just wanted you to know that life goes on, though changed in some ways,and solutions are found, some easier than others.

Later.XO--Colleen

Have a great day! We'll "talk" later.

XOXO--Colleen

thanks for your words, as always! kinda crappy today, long day, no sleep, blah blah blah. cannot wait til baseball season is over and overwhelmed that school is about to let out and gonna have to find a way to change schedules all over again! apparantly, there is a 2 week gap between school and camp, in usual circumstances, would have this all taken care of way before now! in addition, this sunday is the adoption picnic. it is once a year and all of sam's (my little guy) birth-family comes (like 30 of them!) they are awesome (and the whole experience is amazing every year) again, have not even planned how to feed them all - another thing i usually would have done before now! house is a mess, making it worse just a general feeling of outta control, grrrr. i know, give myself a break, unfortunately, the rest of the universe just keeps on going! tg tomorrow's friday! read your last post and appreciate your concern. i am ok, and i truly feel the info gets at least that issue somewhat in my grasp. it certainly makes me sad, but at the same time it's a whole lot better than having it all be one big surprise! listening to you, further down the line, with your upbeat attitude, proves to me that life will go on (differently, but still the same : ) don't feel like you have to use "kid gloves" i can take it and you are only helping me (even if it feels like you are giving me gloomy info at times!) just wanted you to know this, cause i don't want you to be concerned. i can tell you are a wonderful and caring person, who would never want to hurt anyone, the fact that you take so much time to help others is something you should be proud of : ) as i am sure it helps you, it sooo helps others! how great that you sing, not one of my talents (actually i am an artist, or at least trained to be) it is always so awesome to find a niche in the world that you are not only good at, but feel good doing (if you can spread the passion to others, even better!) thank goodness you can still enjoy it and share it with the world!!! off to bed, sleep tonight, maybe... talk soon!
marieka

Colleen,
Your posts are wonderful and insightful. I think many will benefit from reading them as they are! Mom's DX and TX while totally different, we used a lot of the same suggestions.
You rock!
Marieka,
Don't make yourself crazy in regards to the party, it will all come together, and from what you've told me you have plenty of help right near by--ask them to help you--it will get their minds busy on something else besides you! Have fun Laugh a lot--it makes you feel better. I think everyone here will tell you that. There is a thread on here somewhere about laughter being the best medicine--can't recall where and my computer is acting up, someone will probably tell you where. Some of it is a little warped--which makes it even funnier down the road!
Love,
Donna

Donna, now nice to "hear your voice"! You've had a long road to travel with your mom, and I value your opinions. Marieka, this is one lady you should listen to!!

I will be going to a family wedding this weekend, so I'll have to be "quiet" for a few days.

I do have to echo Donna about the party...What a fantastic event!!! And please don't let the house being in a mess or plans not made make you crazy. With that many people around, who can see the house anyway. I promise you that they won't care and will only feel more at home. Do you think that THEIR houses are all neat?? Can you ask everybody to bring something and have a pot-luck picnic? Or can you get by with Stouffer's lasagne and chicken fettucine? They are good and easy and serve a crowd. Add some bags of salad and some brownies, and you've got a great meal.

Will you tell this group about your upcoming surgery and recovery? This would be a group who would want to know and to be given the opportunity to be supportive.

Have a great weekend. We'll "talk" later.

XOXO--Colleen

Marieka....I'll bet you had a great adoption family party! I hope it took your mind off your troubles a bit. Did you tell this group about your upcoming surgery? Sometimes it's hard to drop not-so-good news into a pleasant event, but I hope you found a way to share it with some of the folks that are so important to you. They need to be part of your support team.

You seem to be really concerned about taking care of your mouth after your surgery, so here's what I was told to do: At first, during healing of the surgical edges, after I was allowed to remove the intermediate obturator, I was told to take a cloth (I chose some lint-free woven pads, and I found that my thumb was the best tool...Some cotton pads made for makeup removal come apart too easily.) and rub the edges gently with the cloth and an antiseptic solution (Peridex, or a generic.) It didn't hurt. And I did not go into my sinus cavity--just around the edges.

I was also told to use table salt and warm water and rinse my sinus cavity. It feels good, even if it is a little odd. You will find...or at least I do...(I still do this daily)..that plain water is uncomfortable to those tissues, since most of our body fluids are saline-based. If my solution is not comfortable, it means I didn't add quite enough salt. Stupidly, I still use a salt shaker and shake 10-11 times in half of my drinking cup of warm water. I should measure what is a good amount and then use a little measuring spoon, so I wouldn't be always guessing!

I brush my remaining teeth just like always, with the obturator out, being careful to floss well. The teeth that help to hold the obturator will tend to allow food to pack around them a little.(Remember that there is a saying, "Floss only those teeth that you want to keep." HAHA)

I also brush my teeth with my obturator in, just like I had a full mouth of natural teeth.

You will not be needing this information for a while, but you have seemed curious and concerned, so here it is....not a big deal.

Right after surgery, you'll need to ask your dr. whether or not he wants you to brush and use toothpaste.

If you use a mouthwash, use an alcohol-free mouthwash, like Biotene...or Crest alcohol-free. The alcohol will burn, and it is also not good for oral tissues in general.

So....not such a mystery, eh??

Now...it's your turn. Ask me a question. It's not like you have to know EVERYthing before your surgery. You are not going to be in Siberia where there are no computers. You can write at any time with a specific question, and I'll zoom you an answer if I have one.

I'll email you my phone number too, so you or your husband can call me if you or he wants to.

What's next??

XO--Colleen

Marieka,
You do not need a studio or a great amount of time to create art. Whatever your medium just create miniatures. Get yourself to an art store, go online, order catalogues find something new to work with. There are even water miscable oils available. There are magazines such as American Artist, The Artists Magazine and several on special topics. They have very interesting websites and newsletters. Make an "art" project with the kids - I take a sheet of 140 watercolor paper and get 16 small pieces which are great for little hands. This is less expensive than coloring books and much more fun. Give them some water color pencils, a cup of water and watch the fun. I often carry a "kit" with the paper, pencils,sharpener, eraser, a purse size water spray bottle, and a few q-tips and a small cosmetic brush fit in a medicine bottle. I make quick sketches and the grandkids make beautiful refrigerator art. I tey to followthe advice of an intructor who recommended that we "Do Art" every day. This does not have to be an a big project, some days I just look around and compose a picture in my head or maybe jus ddodle a grey scale using dufferent techniques, imagine how to create a certain color in different media, etc. Just do something creative even if it is only setting up some fruit or a flower in a nice arraingement.

Malka, I know that post was not aimed at me but I have been trying to get back to "doing art" everyday--especially some painting and that post was a great encouragment. Thank you.

Marieka, I hope you had a great party. You are getting great advice here fom some amazing survivors and I hope it is setting your mind somewhat at ease.

Nelie

hi malka & nellie...not sure where the art stuff came from? anyhow, funny cause i am actually an artist, so don't mind the info one bit : ) private art school since a youngin and graduated from moore college of art and design in philly. always fun for the kids and theraputic as well! hope you are feeling well and feel free to read on and join in, all opinions and advice is so appreciated anytime : )

hope the wedding was fun colleen! just re-read your post, what a long day. lance came down with something so decided to give him the bed. yes, pretty generous i know, this way he has all the room in the world - and so do his germs!!! so all comfy in the basement (finished obviously). thanks for the cleaning info. probably all obsessive with it, cause its like the one thing so far that obviously involves ME dealing with the wound. i shared all your suggestions with lance and he of course said he will watch when they take out the one-weeker. i definitely am relieved at the idea of having a basis to judge on. i made him promise he won't make any disturbing faces, he hugged me and assured me that he would never. i don't know why i am so disturbed with this part, seeing it, it seems almost vein and i don't really think of myself like that. i guess, well i know, i will just have to get over it, really its the least of my problems! is the removal of the first one painful? i have read in some spots that it is, did they numb you first, does it take long? while on the cleaning front in general, how do you know if it IS clean in the beginning, does anything like, come out (scabbing, etc.). and oh yeah more, the dentist...the prost. doc said that you take the obturator out for dental work (i.e. cavities, etc. later on) is that true, just don't quite get it, like wouldn't it, drilling etc. make you sneeze? and lance had a question too, when you have a cold, does caughing/sneezing call dislodging of the obturator and how about when it is not in? wow, i do have some odd questions don't i, i am sorry, i hope not too many... funny how you can keep coming up with more when you just cannot stop thinking about something. wednesday is my next consult with the surgeon. i have been a little concerned this week about how much experience he has with this type of surgery. i was SO floored at the last visit with the plan that i neglected to ask. he is a maxo-facial surgeon in the dental/maxofacial dept. but it seems to me (though could be certainly wrong) that more patients in the cancer dept seem to have this surgery than in dental? even when i went in for my molds when the assist. came in to x-ray she assumed i was a cancer patient due to the maxillectomy determination in my file. so now i have this total concern about his experience and what can go wrong. i assume nerve damage, etc.? still waiting on my second opinion from big-wig second cousin once removed. YES MY MOM IS HAVING MY GRANDMOM CALL HIS MOM FRIDAY if we do not hear back by then! hate to do that, i really do - but can't take much more waiting. not all his fault, in his defense, as it appeared that i kinda missed my niche when my records weren't there for him like they were supposed to be (figures!) i am not expecting him to do it, as i believe he specializes in soft-tissue cancers, but I KNOW he knows my surgeon and the protocal, so i am SURE he can at least recommend or not recommend him. hopefully by weeks' end i can unglue myself from my cell! so on wednesday supposed to clear the surgery date and go over pathology. there are 4 types of ameloblastomas (one is malignant, but super rare on top of already rare) and the pathologist who did biopsy was absolutely certain it was not (phew...) i am pretty sure from my own research that the pathology will determine my recurence rate? perhaps you know more on that end. also, taking your advice, next week i am going back to the original periodontist who started this all for my scaling/gum disease. i practically laughed when his office called today, the billing dept, to let me know my coverage, apparantly will be charged by the "quadrant" - can scratch more than one of those quads off that bill! luckily and unbelievably, no cavities to report, small miracle. so decided to take the month of june to enjoy summer and get my house prepared for my mother. like i said she always stresses me out, probably cause she is like a total neat-freak who actually wants the vacuum cleaner lines straight! so i am ending my last round on e-bay (i am a die-hard seller) to make time to get my closets clean (not to mention the guest room and bathrooms, ugh!) hope things are great with you and write me when you can...hugs back at you, marieka

P.S.
thanks all for asking : ) the adoption picnic was awesome! my boys had such a great time and my little guy's birthfamily (20 of them) so enjoyed spending time with him! i DID share my upcoming news with them and they were all so supportive. they even game my sister-in-law all their e-mails to get updates when it happens. it was really a great day and a terrific distraction!

UPDATE, had another apt. today with the surgeon, it will be on JULY 24th. will have another scan end of this month case there is more growth (good grief please NO). STILL NO WORD still from the other guy (who as you know have been waiting on for a second opinion for some time!) now i am getting well, pretty ticked all together. i mean, come on, he could of at least passed me on to someone else if not at all interested! so...ANY SUGGESTIONS FOR SURGEONS WELCOME! am in philadelphia, pa. hoping to find a good referal and really hoping to get into someone's office before S-day, it would certainly make me feel more at ease. did get one name so far over at jeffereson and calling tomorrow. feel free with any suggestions to my personal email (since names and all) i feel kinda like me and my tumor really belong anywhere. maxillectomies are definitely done more often in the cancer department than my department (maxofacial/dental) but since obviously not malignant i am not being seen there. of course this makes me somewhat concerned to say the least, I mean who wouldn't want to be in the department where they are performed more? i was assured today from my surgeon that he has done these before but still feel uneasy (let's face it will feel uneasy anyhow : ) HAPPY THOUGHTS TO YOU ALL AND THANKS AS ALWAYS FOR LISTENING : ) marieka

Marieka, My surgery was done by a maxillo-facial surgeon. He has both an MD degree and a DDS degree, so he is very well prepared to do this surgery.

Also, as luck would have it, I really wanted to go somewhere else, and I couldn't get an appointment there before my appointment with my current surgeon. We went ahead with the surgery, and it is a phenomenal job. If I had gone to the other, larger cancer center, I would now have a scar on the outside of my face, whereas I have nothing (except my neck scar, which isn't pretty) on my face at all that shows that I have had any oral surgery.

I do want you to get a second opinion, however. You will feel soso much better about your upcoming surgery. You will likely find out that you are doing exactly what is appropriate, but if not, then you will have to make some decisions...But first you ahve to choose someplace to go, and soon, so that you will have time to make decisions.

You will need to take your scans and pathology reports with you, so be getting copies.

XO

GOT A SECOND OPINION APPT SET UP! just made this a.m. on 6/16. having records released hopefully smoothly this time...

feel a little more "in control" if there is such thing, and certainly feel that another opinion will make me feel more at ease. interestingly, this doctor, although at another hosp. now, did work at my present hospital's dept not too long ago.
today, now that i have a date, started to go over more things with my boss' in terms of my absence. still other sort of stressy details to consider, mostly - my older son's camp ends the very first week of august, which leaves him the rest of the summer with yours truly and my sister-in-law. am going to look into finding another camp for a couple of weeks after his gets out, probably better for him anyhow (i am boring, even under the best of circumstances : ) my mom is planning to come for surgery and stay a week, my step mom the 2nd week and my mom is willing to come back the 3rd if needed (hopefully NOT!) how are things your way going???????? great i hope : ) marieka

Marieka,

You don't mention where you are going for the second opinion. I was treated at Fox Chase by the Chief of Head and Neck Surgery there. If you would like to contact his office, send me an email. There is a link to my email address under my name on the left.

Also, as you can see, I live in Yardley, Bucks County and if there is anything I can do, please let me know.

Good luck.

Jerry

thank you sooo much jerry, will be emailing you NOW : )

AWESOME DAY - HORRAY!
DID GET MY APT WITH THE LONG AWAITED SURGEON I HAVE BEEN SEEKING (many of you know who i am talking about!) After much contemplation and stressing I emailed like the best letter of my lifetime to a different assistant than whom i have been calling (and getting nowhere). It was a GREAT letter, even with some added flattery (but of course) what do they say, catch more flies with sugar (mmmm, something like that) couple of hours later his assistant calls and immediately puts me on the line with HIM! he gave me i suppose a lame explanation regarding "conflict of interest as we are related", which was all like i said lame. face it, out of common courtesy, could have easily just refered me to one his collegues in ontarhio WEEKS AGO! a few minutes later, sort of flustery like, he stated he was putting me back thru to his assistant and to tell her he wants to see me. i thanked her of course for forwarding my email to him and she stated that she was not sure what happened, felt it was unexcuseable and was scheduling me asap. SO IT IS THIS WEDNESDAY MORNING! i am SOOO RELIEVED! i was just feeling very ill at ease with my surgeon (especially this week when he agreed that maxillectomys are handled much more regularly in the other dept). i also did not like that i asked him if i needed another CT to check for new growth, as it is over a 2 month period from first one to surgery date. he stated yes and wrote the script, BUT I KNOW that if i hadn't said it, he wouldn't have ordered it... in any case, whether second-cousin once removed, top 10 doc guy does it or not, i know i will be getting a very good and much warranted second opinion - finally....
THANK YOU ALL FOR YOUR EMAILS AND SUGGESTIONS (especially WILCKDDS, it was a pleasure talking to you this evening : ) off to get the kiddies to bed (and me too, at least smiling a little this time : ) marieka

Marieka,
Your news is awesome!! You should be proud of yourself for being your own best advocate and speaking up for yourself. It takes a lot of sugar to make fudge but, it works a lot better than vinegar.
I am happy to see that you are much more upbeat and positive than in previous posts.
Have a great weekend!! My thoughts and prayers are with you.
Cheers,
Mike

You keep saying this guy is the top 10 doc, but the question is 'top 10 in what'. I believe it may be laser surgery since he was only 1 or 2 in the country that did it on the larynx back in 2001 when I met him. This is not the surgery you are looking for. You want him to refer you to the top notch surgeon in that hospital who does the surgery you need and I'm not certain your cousin does. You also want his opinion of the guy in the dental dept just in case you don't like the one in otorhino. Usually they can get you in for at least a brief consult with the other doctor while you are there, but since your appointment is on a Weds, the other guy very well may be in surgery. Most appts are on Monday or Thursday there.

Good luck on Weds. and take your list of questions and make certain to get a referral if need be.

Take care,
Eileen

Mareika,

Good luck on Wednesday. I look forweard to hearing about what you find out.

I called Fox Chase this morning and left a message leaving it open ended as to whether you might call them.

Jerry

thanks GERRY and everyone! will post again wednesday!
marieka

I have been lurking around reading your posts Marieka ... I just wanted to wish you all the best for Wednesday.
You have a fantastic attitude which is going to be a blessing and will help you through the coming months.
Take Care
Marica

Dear Marieka...I just wanted you to know that many of us have you in our prayers today, hoping that you get answers and a direction that you are comfortable with. I will check later, hoping that you have posted.

XO--Colleen

PS--Marica is soso right....Your spunk and your attitude and our energy and your sense of humor are going to help you tremendously in the journey ahead. Believe me, you will come out fine, changed, but fine. After all, what is life but one change after another??

HI ALL! TODAY WENT GREAT!!!! he WILL be doing the surgery (2nd cous guy most of you know) on July 14th. i cannot begin to tell you how relieved we are and from what we learned today my reservations about my first surgeon were certainly justified. i was right that i need a re-scan (and should not have had to ask) to check for the new growth and will now be having both a CT and MRI the week before. during the consult today he had a radiologist come in to review my last CT with all of us. he was hoping to perhaps risk some of the 1/2 margin to save more of the sinus support but unfortunately the tumor is right on the midline (got happy there for a moment). however, the MRI will reveal a different spin on it and there may be a chance to save some of the bone behind the area. this was never considered before and obviously, even if it is not possible, it is great that it is least being investigated. the entire time everyone was real "careful" not to "name" anyone, but then he started talking about the "skin graph". lance and i were like, WHAT SKIN GRAPH??? he was at this point VERY SURPRISED, explaining that it was part of the protocal. even added that he was going to speak with him because not only was i not properly consulted, but wanted to make sure that the first surgeon planned on doing the graph at all! i, as you all know, was already plenty concerned after last weeks apt, that was pretty much upgraded to alarmed at that point. mostly just incrediably glad i went with my gut. of course he could still be a very very good surgeon, but our impression still remains that it is not often done by him, nor done as often in his dept. so anyhow, we left feeling relieved. he was incrediably thorough and surprisingly personable, compassionate and even funny! yes, not what i expected. who knows, maybe i got him on a good day, he certainly made mine better. it was worth the fight to get in and worth the wait. funny, the reality of the surgery itself kinda hit us right back on the way home. the distraction was nice while it lasted. but at least i feel much more comfortable now with my care, which is a whole lot better than last week : ) THANKS ALL FOR ALL YOUR PRAYERS AND HOPES TODAY, I BELIEVE THEY FOUND THEIR WAY TO PHILLY!!!
talk soon, hugs, marieka

Marieka,

I am happy to see that everything went so well for you today. Still don't understand his reluctance to see you from the get go, but I believe that he is a little quirky. He runs hot and cold. In any case, I have heard nothing but good things about his surgical skills.

My prayers didn't have too far to go from Lower Bucks to Philly.

Please let me know if there is anything I can do to help out.

Jerry

Well....good for you! Being confident in your care is #1 on the list of things needed as one faces such surgery.....and of course #1-A is a qualified surgeon, and in this case, a TEAM of qualified professionals. I am soso relieved that you persevered and got to those who are best equipped to do this complex surgery.

Skin graft....My surgery might not have been quite as complicated as yours, since it did not involve my sinus structures, but I, too, have a skin graft. They were planning to take it from my thigh, but they ended up using a synthetic product, and all went well.

Now...Anytime you are ready to ask more questions, fire away.

I am glad that you got your surgery date moved up. There is absolutely no reason to torture yourself much longer thinkthinkthinking about it.

And I'm glad, too, that you will have the best of screening methods done right before your surgery. Everybody is built differently, and they need to know exactly what they need to do before they begin.

I feel so much better about things for you!!!

Let me help in any way you need. Just holler!

XOX--Colleen

Marieka,
You have made a great journey from your initial uncertainty and fear. Congratulations on following your gut and perservering. My prayers are with you that all will go smoothly from now on.
Malka

Marieka, That is wonderful news and it sounds like you really were right to follow your gut about the other doctor. When facing any kind of big surgery, confidence in your doctor is essential. You now have a doc you can be confident in and people here who have been through where you are about to go. Not to mention all of us others who will keep you in our thoughts as you go through it. Short of not having to have the surgery at all, you're in a great position going into it.

Nelie

Good news and good luck.

Marieka,
Glad you finally had your appointment in otorhino at HUP. I never thought you should be on the dental side of that hospital. I'm curious why you are waiting so long for the surgery if this tumor is still growing. Are you certain that postponing this until it is convenient is a wise idea and did the dr. discuss that with you? I think you are in good hands. Good luck.

Take care,
Eileen