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