Hi Everyone,

So, I figure I now need to hope on the internet and become informed. I avoided google while I was waiting for my first biospy results as I was, as expected, hoping it was just a simple benign lesion. Well, the whirlwind has started and there is no denial that I am now a cancer patient.

Here is my journey so far.

On June 28th, I had a routine dental cleaning (a new dentist for me, one I had been wanting to switch to for 18 months...and yes, that means it had been 18months since my last cleaning) While she was cleaning my teeth she noticed a purplish spot on the roof of my mouth. She took a picture and the dentist wanted to watch it, but thought it could just be an injury from a tortilla chip ect. Went back a week later and it had changed to a more grey and white color and a bump was slightly formed. My dentist was going to be closed for a week for the July 4th holiday and said he wanted to see me as soon as he reopend on July 11th. We were out of town that week so I saw him again on July 18th, he right away said I need to make an appointment with the oral surgeon and he want to make sure I made that appointment ASAP! He said to take this serious and it is very very urgent!

So, I saw the oral surgeon and he indeed said this lesion needed a biospy, it was removed on July 28th, he said he got the entire legion and things went well. On Aug 3rd I went back in for after surgery check and the biospy results. My oral surgeon was shocked to give us the news that it was cancer, mucoepidermoid , the tumor graded a low 2 but with no margins (I am not exactly still sure what all this means. So now referred to Dr Futran at Univ of Washington Med Center...great Dr. so that was a sigh of relief as I did not have to "shop around".

On Aug 10th I had a CT scan and that came out clear, nothing in the bones or lymph system...but I am scheduled for the 2nd surgery (resection) and biopsy on Aug 31st. He said it should be straighforward and no bones will be disturbed. So much more was said but quite a blurr right now. He said they will re-grade the cancer as a whole and we will go from there. Of course the word radiation came up but surgery might just get it all.

So, this is my week to get things in order. I am a 39 year old mom of 3 boys, ages 9,8 and 6. I am very healthy so this really shocked me! I homeschool my kids and we love every minute of it so I need to pre-plan a tiny bit for the possibillity that recovery might be a long road...but praying for the best outcome!

It has been a crazy few weeks, not much sleep and I have soe pain in my jaw after my first surgery (due to teeth sensitivity) and a very dry mouth which wakes me up when I actually do fall asleep. I am not sure what to think as this is a while new set of terms for me. I get the whole lingo thin as I am a pilot...but never thought I would have to learn a whole to lingo!

Thanks for listening....

Hi, Mom of 3
Welcome to our forum - and sorry you have have to be here!
I also feel happier with preplanning, and got as many of my ducks in a row as possible.
I would consider three possible issues moving forward:

1. Child care while you are getting treatments/surgery. If they schedule you for radiation, that will involve some long appointments for 'planning' the radiation and getting you set up for it - you probably don't want the kids along for that. The actual radiation sessions don't take long, but the waiting room may not be the cheeriest place - you will have to decide if the kids should come too, or not.
2. Talking and fatigue. Surgery and radiation may make it difficult to talk for a while. This may put something of a damper on the home schooling. Do you have a friend that homeschools that could help? The home schoolers I know have pretty good support networks.
3. Driving. If you have to be on heavy pain meds, you may be willing to drive yourself, but I'm pretty sure you won't want to drive the kids. This is an area where you can easily ask for help - I had a whole list of volunteer drivers for my husband in case I got sick. As it turns out, we never had to use any of them, but it was wonderful knowing the help was there if needed.

Also, in your post you noted: "So much more was said but quite a blurr right now."

Always take a notebook (and a friend to take notes, it possible) to your appointments. Write down your questions beforehand, and the Dr.'s answers. I asked my husband's doctor for the best case scenario on the healing process and what to expect, and his answer was pretty close to what we have been through.

So glad you found this place. You will get the very best and latest info, plus knowlegeable and compassionate help from people who've been where you are. Sounds like your dentist put you on the right tract to get the biopsy. It is really good to plan ahead and find out as much as possible so that you an ask questions and get the answers you need. It's a good idea if you can have someone go with you to appointments so that you can ask questions and have help remembering what was said. I went to my son's appointments and a couple of times we took his 5-year old daughter with us. I think it helped her to understand and think positive about what was happening to her Daddy. Everybody reacts differently to treatment and some have it easier than others. The waiting room where my son had his Rad Tx was very pleasant with a very nice "cookie lady" who came and talked to everyone, offering them cookies or drinks or to share experiences. A couple of times, a very nice therapy dog came to visit, who had the kindest eyes and only approached anyone if they indicated or showed interest. About the dry mouth, you probably keep water by your bed at night but perhaps a plant mister might help. My son kept one by his bed so that he could spray and moisten his mouth which allowed him to not wake up as much as having to get a drink of water. Do avail yourself of the search functions on this site - it will help in deciding what questions you might have for the doctor at your next appointment. And let us know how you are doing.

Welcome to OCF! You are in the right place to get lots of info and support. I was kike you, cancer didnt fit into my life but somehow I had to put everything on hold and deal with it anyway. You will get thru this! It wont be easy, but you can do it!

As far as your children go, you have your hands full. Every single time someone offers to help, write down their name and all contact info in a notebook. Tell them you will let them know when the time comes what they can do. Even something as simple as picking up a pizza or taking the kids out for ice cream could be a big deal. There will be a million little things that people can do to help out, cook a meal for your family, take the boys to the movies, do a load of laundry, pick up medications or even making sure the homework is finished will be helpful.

Being treated at a cancer center is the best choice. There they will treat many similar cases per year. A whole team of specialists will get together and discuss how to best treat you.

Dont worry about the lingo, you will pick it up and be talking 'medical' in no time. Best wishes with everything!

Thank you all for the great tips - I really will need to learn to let others help - I am so used to being SuperMom! I do have quite a network of support, and a good friend went through Breast Cancer 5 years ago so I have a friend that gets it

I love the spray bottle with water idea and will try that tonight. I cruised around the forum tonight and wow, there are alot of great things said about my doctor, Dr Futran and Carol my NP. He was great on the first visit, talked in plain english, not medical-ese, but then I forgot so many questions (or maybe I am thinking of them now) Mostly about the actual surgery, I have never had a surgery (except the oral surgeon that took the lesion out) but I have no idea what to prepare for general anethesia, except they said no ibuprfen. they precleared me for the surgery so I do not go back in until that day 8/31...see what happens when I stay up late and can't sleep, I start thinking!

Hi Mom of 3 boys...welcome to OCF. I promise you have found an awesome support system here.

You may want to call your NP and talk about any medications you take. I know when I have surgery I get a list of medications that is rather long and you only mentioned ibuprofen. I think their main concern is anything that thins the blood but you would be surprised what actually does that. It can't hurt to check....it wouldd stink to get there and have to reschedule.

As far as anethesia, everyone is different. They give you so many drugs but I think the most common main drug is propofol. Some hospitals will give you something to calm the nerves while your in pre-op (a cocktail they call it at my hospital) through the IV. It totally calms you down on the way to the OR. Just try to realx as much as you can..I found the nurses in pre-op, the anethesiologists (sp?) and the nurses in the OR and very kind people. They do everything you can to make you feel at ease.

It sounds like you have a good support system which is important. I know it's hard....but try to not be supermom. Let people help you because you will need it. I have an 8 month old and had a procedure in May. I was in a lot of pain and all I wanted to do was sleep. My father in law came to our every day in the morning before Nicholas got up and stayed until my husband got home from work. It was great because I was still with him but I could go to sleep when I wanted to which is huge. You will need to rest to take care of yourself for them. Having cancer is hard enough....when you add kids to the mix it even harder.

Finally...I would talk to someone before surgery about pain management. I was diagnosed in 2007...I've had 4 surgeries...multiple biopsies and participated in 1 study. All very painful and I just met someone who does pain management. I sure wish I had met her before!! So, ask if there is anyone that does that at the hospital you go to.

Good luck and I look forward to supporting you through your journey.

Hi there and welcome... Everyone here has given you great advice I just wanted to welcome you and tell you that is completely understand your shock. I'm just a few years older than you and I too was completely healthy. I don't smoke or drink and am a veg head so imagine my surprise. I'm fortunate in that all of my children are university age - I had them very young - so that was one less thing to worry about. Please take one day at a time and good luck on your surgery. I know everything is a blurr right now but try to educate yourself - it can be scary - but knowledge is power and knowing what to expect demystifies things and allows you to advocate for yourself. Take care.

Hi there...sorry you had to come here but glad you found it and have a great doc!

I hope they get clear margins for you and you can heal without having to have adjunctive therapy(rad and chemo).

Glad you also have a good support system...but you need to be ok with letting others help you when you need it, and don't beat yourself up if you can't do some things for a while. Think of it as a not so fun vacation,

As for dry mouth...I tried humidifier by my bed and the spray bottle, and none really did anything. So now I just use dry mouth mouthwash before bed and when I get up. I still wake up with a very dry mouth, but it's manageable.

Will keep you in my thoughts and hope for a swift recovery and clear margins!

Well, I just got the call for my surgery time tomorrow. My surgery will be at 1:00 pm at University of Washington Med Center. Pretty anxious today...waiting...sigh...the day is almost here!

Thanks for all of your tips, the spray bottle really helps the dry mouth.

Praying for an uncomplicated surgery and CLEAN margins!

MOTB: I'll be thinking of you tomorrow. And for the clean margins to be sure.