Hi all,

I'm getting ready to leave the house in about 10 minutes for my 4th partial glossectomy. This will be my first time that I have to stay in the hospital. I feel confident that is a good thing. Thank you all for your support. Knowing when I come to recover that I will have you to chat with makes me feel very good. Talk soon

Suzanne

Suzzanne, I want to wish you all of the luck in the world and make em proud of you. Will be looking for the post that will come from you after this is over..

Suzanne

Best of luck today. Hope this time its successful. Please take care of yourself and post when you can. Sending good thoughts your way.

Suzanne,

You hang in there. I'm sure you'll be up and about in no time.

Suzanne,
I have been thinking of you today and pray that the surgry is sucessful and you have an easy and speedy recovery.
Malka

Suzanne

Best wishes for a very successful surgery.

Karen

you'll be fine, stay strong!

Thank you all for your well wishes. I can't express how happy I am that I found this forum with such wonderful people. The support and knowledge found here are great.

They gave me cream of wheat for breakfast this morning. I began to eat and the nurse came in and said "is that hot?" I said "yes" and she said "you shouldn't be eating hot food. Would it be mean if I took away?" I thought YES!!! I haven't had anything to eat in a long time. She wanted to give me cold ceral which is too hard and I told her that. She said she would check on what I was allowed to have. So I ate as quickly as possible just in case!! She came back and said it was ok..lol

The good news is, my doctor didn't think it looked as bad and she took less than expected. No muscle was taken so I'm hoping the recovery will be faster. When I got there I was not having pain and she even said we couldn hold off on the surgery. I still decided to have it b/c she said there is still reason to do it. Any thoughts on that? It was kind of hard to make that call on such short notice.

Hope everyone is doing well, I haven't had much time to check out what is happening on the others threads. I'm hoping to catch up tomorrow!! Jim, it's great to see you posting again:)

Suzanne

Happy healing

My grandaughter gave me a hysterical get well card about all the foods and drinks that were bad for you and how what replaced them are now worse and things that were good are now bad.
The conclusion was that if you're sick it's because of something you ate during your lifetime so stop eating - "unless you have a fever, in which case it's feed a fever...though feed it what, I don't know."

Hi Susanne,
Glad the surgery went well and the area was smaller than the dr expected. So next time just tell her to let the cream of wheat cool. Hard cereal after tongue surgery, is she nuts? Hope you have a speedy recovery and this is the last of it.

Take care,
Eileen

lol...that's what I thought. Lets give the girl who had some tongue removed the hard cereal..lol They gave me a banana too. I thought that was strange too. Luckily I ate my cream of wheat fairly quickly at room temperature:) I knew people here would understand why I thought that was so crazy!!

Suzanne So glad to see you up about and as positive as ever. "Less is more" for surgery for sure. Have a Happy Valentine's day - (do a chocolate Ensure Plus )

Hi Suzanne,
Glad you are doing well. I had my day surgery on Thursday and with around 15 stitches that I can count I am back on the liquid and mush diet for the next week.
Sloppy mashed potato with melted cheese last night.
Just had my breakfast bannana/peach smoothy. That stick blender was the best investment ever.
For Valentines Day I should be able to manage a chocolate mousse.
We have to have some treat

Without cream of wheat I would starve. I mix a little bit of coco wheat in with it. Back down to 164 and trying everything that says food on the label. This anneurysm sure isn't making things easier. I'm proud of you Suzanne. You make us proud.

Thank you Jim..that warms my heart. You sure do set a great example!! It feels good to be home. And I have to admit...the "I don't care" feeling that I get from percocet isn't all that bad!!! I like your idea of mixing coco into it..that sounds yummy.

Charm, I like your idea of a chocolate Ensure!! Mmmm. That will be good.

Gabe and Jim, hope you are recoveries are going ok. I will have to check out your posts and see how things are going.

I think I read of post from Pete D and he was saying how gratful he is. I couldn't agree more. This life is crazy but the joy of my family, friends and the people here make me a happy person everyday!!!

Suzanne

Nice to see you back on here already. Hope you are doing ok. Pain meds are a huge help!!!

Best of luck to all 4 of you who are recovering right now, Suzanne, Pete, Gabe, and Jim. Hope all is well and you all heal up to be better than ever!!!!

Thank you Christine. You are an inspiration...you have been through so much yourself and are always here for those of us who need support. I couldn't wait to get back and see how others are doing. As I always say, I am so happy I this site...I only wish I had found it sooner.

Yes...thank goodness for the pain meds. It makes life so much easier. I am also thinking about my fellow friends recovering. Pete, Gabe and Jim. We can do it!!!!

Hi all,

I went for my follow appointment and my doc said it is worse than she thought. The pathology came back as severe dysplasia but the front margin is not clear. Also, she biopssied a small area on my left cheek (my cancer is the right of my tongue) and that was moderate dysplasia. Needless to say I am scared and not happy with these results. Also on my pathology report it says Keratinizing as an adjective. What does this mean? I was really hoping to hear the margins are clear..it's healing well and I'll see you in 2 months. I'm so mad and disapointed. Does anyone have words of wisdom?

Well Suzanne, the 2 months makes it sound bearable. As tough as you are, you are gonna come thru this like a bear thru brush. You inspire me. Good luck Mam.

That is so kind of you to say....I really hope I'm ok. I see what others go through and I'm scared. I just want to wake up and this will be gone and I know that can't happen. You inspire me..you make it all look so EZ:)

Suzanne,

When do you get the biopsy results? I hope that it is early next week so that you don't have to wait. Is this your ENT?
Were your margins clear after your other surgeries? I was wondering if they have ever talked about radiation with you after surgery? It would almost seem logical if the margins are still not clear or close to use radiation.

I will keep you in my prayers and you keep your positive attitude.

Patty

Hi Patty,

I received all of my results this past Friday. The tongue was severe dysplasia and the cheek was moderate dysplasia. My doctor did say she thinks I would be a candidate for radiation in the future. She doesn't want to do it now since it can only be used once. To be honest...I'm petrified to get radiation. I know so many here have gone through it but I am so scared to do that. Is radiation as bad as I think it is?

Suzanne

Radiation is no walk in the park for sure, but like everything else it is as bad as you let it be. Near the end of mine I got very down and was in quite a bit of pain and wanted to quit. I probably would have without a couple of boots in the butt from people like David, Charm and Pete and an interesting story from Brian Hill about termites. But remember that I have had treatments twice so the skin irritation was quite a bit more severe. Everyone reacts differently also. During my first radiation, I had red skin, but nothing very severe and very little dry mouth.

You are fortunate to have this site to research and get information about the radiation prior to receiving it. Also to have the support during treatments. I was on my own for my first treatments and was totally unprepared for everything from the making of the mask to the actually treatments.

What I wonder is why she says that you are possible candidate in the future if your margins are not clear now? I am a little confused about your treatment plan I guess.

Patty

Radiation is not much fun, but it can preserve tissue. In retrospect, it was not that bad.
Considering that you have multiple glossectomies, I would recommend that you consult a CCC with a multidisciplinary team. Does your physician (surgeon?) know why you get recurrences.
There are several people that had IMRT a second time.

M

Intersting...people do get radiation more than once in the same location? I hadn't heard that before. I am being treated at Fox Chase Cancer Center. To my knowledge that is a CCC.

I am thinking it is time for a 3rd opinion. What I find to be frustrating is I've been seen at The University of PA (Penn) and Fox Chase. Both are supposed to great yet both doctors said they don't know why I keep getting recurrences. Shouldn't someone know something? And...the last surgery and biopsy were both my decision. My doctor didn't think I needed either. As it turns out I did need it. That was all based on how my tongue felt to me. That is a lot of pressure.

suzanne

One factor in the re-radiation equation is how much radiation you had the first time around and where. in my case, I already had the "maximum" 7200 GY, but my RO did consider (and abandon)the idea of using the "cyber knife" to treat this recurrence since it could be focused not to radiate my jaw nor the bulk of the prior radiation field. But he and the ENT both agreed that the surgery is the way to go here as it appears my cancer is somewhat "radiation resistant".
At the time, I thought that Radiation was the hardest thing I ever had to do, but now I am much more concerned about the aftermath of the glossectomy, mandibulotomy, neck dissection, free flap reconstruction and tracheotomy. You've already sailed through those and I appreciate your posts.
So, let me reassure you that if you need radiation, it is very doable. My entire team (RO, MO, ENT) all felt that the surgery is far more drastic than the radiation and chemo and had hoped to "spare me" from this. It's fear of the unknown that gets to you. Radiation is often used to "mop up" after surgery. I wish I knew why any of us get recurrences but no body except quacks and con artists even pretend to know.

Suzanne
Fox Chase should be good. Are you seen by a team or just one physician?
Regarding the recurrences: The question is then are these actually new lesion or were they already there before and just not yet visible?
If they are not brand new, then radiation might have worked and given you a "clean slate" This especially, since with radiation you can treat a much wider field.

I would definitely get another opinion from a team (including RO, MO and surgeon)

best
M

Hi Suzanne,
Good luck, keep positive, and Isend you all of my best wishes.
C

Hi Suzanne thinking of you. KATE

If the Drs. reccomend radiation I would absolutely do it. It was not fun but gave me the peace of mind that they took care of business. I'm sorry you are having to deal with this again!

KATE

Charm,

I believe you mean to say that you had 72 gys as each is expressed as 100 rads.

Thank you all so much for the feedback. I am so happy everyday that I found this site.

Anywho....I decided today I am going to Memorial Sloan Kettering for a 3rd opinion. I need a doctor who is going to take the bull by the horns and make some decisions. I'm not sure if I mentioned this but the day of my surgery (in hospital gown with matching socks, IV in, pee in cup and all) She asked how my pain was. At that moment it was fine, so I said it was ok. She said she wasn't sure if we should still do the surgery and what did I think. What did I think?!?!?! I think you're the doctor, you're the one that went to school for ages....can't you tell me if I should do it or not?!?!? So Ray and I both decided I should still do it. As it turns out she was happy we did it. What would have happened if I made the wrong decision? I feel like that is too much pressure. Has anyone ran into this? Am I too picky? I feel like this is something I should be picky about.

Suzanne

I think it is something to be very picky about. You should be making the decisions for your treatments but based on the options given to you by the professionals. I am glad that you are going to Sloan. Even if you gain just the peace of mind of knowing that things are being done properly that is really something. The stress of this ugly disease is enough, then the stress of the medical bills and payment and how to live your life. What is not necessary is the stress of feeling like the doctor is looking to you for the diagnosis or treatment.

Even if you did stay at a Holiday Inn Express last night.

Patty

[quote=Good1]Suzanne


Even if you did stay at a Holiday Inn Express last night.

Patty [/quote]

Good one, Good1!

Deb

Suzanne

First, I never heard of such shilly shalling on the part of a surgeon and you have every right to be disappointed in such an attitude. Good for you to muster up the energy and time for a 3rd opinion at Sloan Ket. I am impressed since it is so daunting a time in your life.
And like all good CPAs, David is technically correct on the radiation nomenclature. I blame my RO still uses the old Rad scale (which even Wikipedia lists as "largely obsolete". ) Moreover, I would not have had to worry about a recurrence if they had given me 720,000 Rads, as that would have been beyond my lifetime warranty and resulted in an involuntary recall to the manufacturer.

Well....I just spent an hour and half on the phone getting everything together for my appointment at Sloan. They will decide if I should see a medical oncologist or a surgeon. I'm no expert, but I think it's time for a medical oncologist. I've only see surgeons so far and see where I am?

Charm..you crack me up!!! I love the "Involuntary recall to the manufacturer"

Just like us here, the woman at Sloan that I spoke to was having a hard time understanding my case. She said "you had 4 surgeries?" in a tone that made me laugh. She said "Well what other treatment have you had" I told her none and we are doing Watchful Waiting. She thought that sounded pretty crazy. So hopefully I can get all paperwork to them asap.

I'm prety sure there is something I need to be doing for the wedding. I've been having "Wedding Nightmares" It's too funny.

Charm...I will be thinking of you tomorrow:)

Good Luck Suzanne! I will thinking of you!

Great news Suzanne!! When is the appointment??

As for the wedding - let's see - you have a groom? and a cake? and a dress? and a person to perform the ceremony? Your done.


Patty

lol....I do have all of those things for the wedding. You are right...I'm good to go. I even have flowers, a DJ, a photographer and food!!!

I have to get my paperwork to SK before they make the appointment. I'm hoping to get everything together by the end of the week and make the appointment for after the wedding. Right now I am going to concentrate on the fun part of my life. Although talking to everyone here is fun too.

I would put comfortable shoes and undergarments ahead of the cake. Probably # 2 after the groom. Of course you will need that dress and someone to perform the ceremony.

Good luck with SK. you have made a wise choice, if only for your peace of mind.

Suzanne,

Keep in mind just in case.... that we do plenty of weddings and receptions right at my wife's restaurant. I am a Notary and have performed probably 15 +- weddings and I'm proud to say not one has ended in a divorce (that I know of). I've married people on boats, on docks, many on the beaches and one in the restaurant that was at the cash register and was kinda strange but they are still going strong after 8 years.

lol.....at the cash register?!?! That is funny. I don't know why I just saw this post today.

I'm still home recovering today. I did go back to work but it hurts so bad. I was thinking after 3 weeks I should be ok. Am I being too impatient?

Everyone heals at a different speed. If you feel better at home right now, then you should be at home. Maybe when you go back you should try 1/2 days or only a couple of days a week to start with. Ease back into it instead of jumping - this is advice that people give me all the time because I am such a jump off in the deep end type of person - or should I say WAS.

Patty

Your laws concerning Marriage are different than they are in Ohio. Ministers, Judges, and Mayors are the main 3 here to perform the Wedding ceremony. I was a 2 term Mayor and performed quite a few. Like you David, the ones I peorformed are still intact. THe 1st was a friend of mines daughter. I was more nervous thn anyone there. LOL But we made it thru.Thses were some wealthy people too and I grew up with the Father of the Bride . We were and are still good friends.

Every one gets impatient with this cancer so you're normal and don't forget that.

Thank you David...it's good to know I'm normal. I'm usually pretty patient but last night I had a breakdown. It was the straw that broke the camels back when I had some problems getting an Rx filled. I hadn't eaten dinner, had to use the ladies room, was in pain, had been out of the house for 14 hours and still had to drive and hour and half home to NJ. I cried almost the entire way!! lol

Suzanne, I think maybe 4 hrs work every other dy until you see how you can handle that many. Hate to see you harm your self in anyway by overdoing things.

Suzanne

Im sorry you had such a rough day. Even recovery from surgery takes a while. A long day doesnt help you right now.

Last year I thought I would bounce right back from having the tumor removed from my cheek. It took me months, a long hospital stay and 55 HBO to heal and recover.

Im wondering if you are like me when it comes to being hungry. If I get hungry I must eat something right away or I end up feeling very sick. When you are so limited to what to eat, it makes it very difficult. Do you get that too?

Please dont rush getting back to your regular routine. It makes you feel better mentally, but physically you might not be ready. Try to take it one day at a time. Hope you feel a little better every day.