Hello everyone.

I was diagnosed with SCC of the gum a couple of weeks ago. It has been caught very early, barely stage I. I spent several days at the Mayo Clinic in Rochester, MN getting all of the tests that one with Cancer needs. I will be having surgery on January 12th to remove three teeth and part of my jaw bone. My outlook is very good. But I am still scared. I have three kids, ages 5, 4 and 2 1/2. My Mom died of Cancer when I was 8, so just hearing the "C" word is enough to make me panic.

I spent a good part of my day reading posts on this site and it has really touched my heart. You all seem like such wonderful people. I don't have any specific questions now, but thought I'd introduce myself. And you can bet that my prayers will be directed to all of you that are going through the same stuff.

Goodnight.

Welcome Amy
I can say you are in a great place, Rochester Mayo. I had 4 teeth removed before the radition.
You are very lucky to have caught it early.
And on a positive note think about it we get check over every 3 months after all said and done, that is a great protection. I have 2 boys 12 & 15. There mother also had breast Cancer 4 years ago, so they got a double dose.
Im from MadisonLake Minn there are a few of us that have the same thing right around here.
It is a emotional roller coaster ride,
I will be thinking of you Jan 12.
Good luck
Chris

Chris,

Thank you for you thoughts and support. I guess if one has to have cancer, living 60 miles from the Mayo clinic is a pretty good luck.

After reading so many of the posts on here, I feel a little foolish even worrying about this. My problem seems so small compared to most. After my surgery, I will likely not need further treatment, less than a 10% chance they tell me. Of course I am thrilled with that news, but it is still a scary road, none-the-less. At this point, I am stressing about waking up after surgery with part of my mouth gone. It's just teeth and jaw bone afterall, I should be able to function just fine, I am told. But still, the thought of it all is making me crazy. Not as crazy as the not knowing part. The week I spent waiting for test results to find out if this had spread anywhere was the very longest, most painful week of my life.

I have not lost my sense of humor, and I don't intend to. That's what I am banking on to get me through. That and the support of good people like you.

Where is Madison Lake? I am drawing a blank.

Amy

Amy,

Take a deep breath. Everybody goes through the shock period. It's a natural defense the body puts up. We are all fortunate to have been Dx, whatever the stage and I hope that surgery will be all you need. I didn't have to have surgery but did have to go through the Chemoradiation Tx. Either way the goal is NO CANCER.

Feel free to ask any question. I think you will find many answers from different perspectives.

GOOD LUCK with the surgery and please keep everyone up to date.

It over by Mankato. There is no getting around the worry. Your sense of humor will help alot.
Chris

AMY, it breaks my heart to see a mother of 3 kids so young have to go thru what you are going thru. There,s something about you and your past that leads me to think your going to do fine. Young children are the best medicine in the world coupled with your great sense of humor I see you being an inspiration to many for years to come.
Best Wishes,
Mark D.

Dear Amy,

You don't say whether your SCC is on your lower jaw (the mandible) or your upper jaw (the maxilla.) Almost exactly one year ago, I had a partial maxillectomy with a partial palatectomy because of SCC on my upper right gum, which had spread to the inner side of the gum and onto the hard palate.

You are correct in that there are others on this board whose problems make me thankful that this is "all" I had to contend with. However, it is a significant event, and a loss that we have to come to terms with. And it is still cancer, an ugly disease whose voice lurks in the back of your brain trying to make you depressed. That is part of the battle....learning to ignore that voice!

Thankfully, in the case of maxillectomies, there are prosthetic devices that help restore the patient to normal function eventually. I was pretty unhappy for a while after my surgery, but I, like you, was determined to take back my life,,,,,and I have! I do everything I was doing before my surgery, with the help and understanding of friends and family.

If you want to talk about it more, feel free to ask anything at all. It is an odd surgery, and there are not many of "us" on this board. There are a few, however, and we are all a bit ahead of you.

I, too, was told that the maxillectomy often results in a complete cure, without the need for further treatment. I have had a one-year check-up, including a PET/CT scan, and I am all clear, TG! and I had only surgery, without radiation or chemo. My surgeon said from the outset that he is very "aggressive," going for a cure. I had clear margins. I did have a neck dissection, because of the size of my lesion and the length of time it had been overlooked by my dentist, and all of the nodes were clear.

One more thing, Amy.....Do NOT apologize that your cancer is not as "bad" as someone else's. It is still quite serious, and many of the things we have to deal with are shared by the others on this board. You will do just fine, and your spirit will see you through. But don't diminish the seriousness of it, and don't feel that you don't deserve just as much attention and concern as others with different circumstances. If things turn out to be fairly simple, we will all sincerely rejoice with you!

I, too, have had these feelings, and I am truly thankful that my cancer seems to be gone. I still have lots to learn, however, and cancer will forever be a part of my life. If I remain healthy....which I expect to do!!....then perhaps I can pass along to others...like you!....some of the help I received from others before me.

Hi Amy -
I just wanted to welcome you also. My husband and I grew up in Winona, now living in Florida, land of black socks and plaid shorts....and voter discrepencies.
My husband has had 3 bouts of SCC (within 5 years), all on gum or inside cheek. He has lost 3 teeth total and part of his jaw via "shaving" with all the surgeries. He never required radiation because all were so small, and had clean margins, so they decided against it. Sounds like that will hold true for you too. He did have a neck dissection with first surgery, and the nodes were also clear. He never smoked and isn't much of drinker, but does have leukoplakia, which may be the origin of the individual cancers. I agree with Mark (and all the posters) that you are young, have much to look forward to, and the cancer was caught early, so you will "do fine". I also have high hopes for you. Who found the cancer? Was it you or a doctor? Keep us updated on your progress.
Warmly, JaneP

I am curous who caught it? Was it a dental professional who noticed something (Doesn't happen often enough)? If so in the dental section of the web site we have a life savers area for dentists that we recognize as being really on top of things and catching this disease early.

Thank you for all of your kind words. I truly felt like I had no place being in a sea of folks that really are much worse off than I am. But you all have really welcomed me and I appreciate the support so much.

Yes, it was my Dentist who caught this, after a bit of prodding by me. It is sort of a long story, but here goes:

Towards the end of April 2006 I had an irritation on my gum on the bottom right side. It didn't hurt, it more felt like I always had food stuck there. I had a 6 month dental check up already scheduled for May, so I decided to wait and ask about it then. They took a look and really didn't think much of it. I went home with a $17 bottle of mouthwash and the instructions to floss and rinse well each day. I did. It didn't really get any better, but didn't get any worse either, until this past fall. Towards the end of September/early October, I started having some pain in the area. The soreness is on both sides of the tooth, just at the gumline. Being a busy gal, I decided that I'd try to hold off until my November 6 month check-up. But then I changed my mind. I just had a funny feeling. I saw the Dentist who still wasn't really suspecting Cancer. He thought it looked more like trauma than anything else. He prescribed an antibiotic and instructed salt water rinses and to come back after the antibiotics were done so he could re-evaluate. When I went back, he was very concerned because it didn't respond to the antibiotics at all. He said that he hadn't seen a case in a long, long time, but he thought it was possible that it was cancer. He got me an appointment with an Oral Surgeon immediately following my visit with him. The Oral Surgeon took a biopsy, but told me that it was very unlikely that this was cancer. She told me that cancer didn't hurt. Since mine hurt, that was a good sign. She told me that getting cancer on your gum is also very rare, that's not where it usually shows up. I am a 37 year old female, she told me that it would be very unlikely for this cancer to strike someone like me. And it didn't look like cancer, she said. I went home and got on the internet, which was foolish because is caused me more worry. I saw a photo of some gum cancer and it looked exactly like what I have in my mouth. Exactly the same. I went back to OS to have her check that the biopsy site was healing okay. This was a week later. She didn't have the results yet. I explained to her that I had done a bit of research and I was convinced that it was Cancer. She told me "I'd almost bet my life that it isn't cancer, quit worrying." I left her office feeling a bit better, but I still couldn't shake the feeling. And then another week later I got a call to come in to discuss my results. I knew it was bad, but of course they wouldn't confirm that. I didn't have a sitter, so I told them that my tiny little kids would be coming. That's fine, they said. Thank God that at the last minute my neighbor volunteered to watch them. I can't imagine having them there with me while I heard that news. I am actually quite angry at the OS for poo-pooing my concerns. I know that it didn't affect my TX, because she got me hooked up with an awesome Surgeon at the Mayo clinic. But still, I have no trust in her whatsoever. I will NOT be seeing her again. If I need follow up care from someone closer to home, which the Mayo Doc said I would--I will not go to this OS. I am sure that she is a fine Doc, but I don't trust her. My hubby thinks I am being to hard on her, but I really think that she should have been more honest with me. She could have at least agreed that it was possible it was cancer.

And for those of you wondering, I am a former smoker. I quit a few years back. I am not much of a drinker but I do like to have a beer after mowing the lawn, times like that. In fact, up until a few months ago, I hadn't had even one sip for 5 years. I was either pregnant or nursing for 5 years straight. I figure if I can survive that, cancer should be a piece of cake, right? They tell me now that I should never, ever drink again. Ever? Of course I won't, if it means that I can live. But it's weird to think that I won't be able to ever have one beer again. Small price to pay to be able to see my kids grow up though. Now if they tell me that I have to stop the diet coke, I'll be in big trouble.

The Surgeon at Mayo told me that I have my Dentist to thank for getting me treated so quickly. If he had put it off or tried other things himself, there is no telling how much worse this could have ended up. But one thing that sticks in my mind is back at the May appointment where I first mentioned this. I had an oral cancer screening as part of the visit. I remember him saying "oral cancer, negative".

Thank you again for all of your support. It's nice to have people to lean on that know what it's like.

Good Night!

Amy

Amy, you are being to modest, it sounds like you have been thru a ton.I used to enjoy a beer myself watching my wife mow the lawn, haven't had one in about 9 yrs but still enjoy watching her mow the lawn.
Amy I can,t help but think of how many times where I have heard of stories like yours where you are assured that it's nothing only to turn up cancer. Most doctors are competent good people and I wonder the opposite,-- if they said they thought it was cancer and came back negative we would be angry for days of needless worrying. Why Don't they just say I don't know let's wait for the results.
Truly wishing you the best!
Mark D.

Mark,

Your message gave me a good laugh. Having a beer while watching your wife mow the lawn, that's funny stuff. Sounds like my hubby.

You are right about the opposite; I think if a Doc said "cancer" and then it wasn't, I'd have been upset about that too. In fact, when my Dentist said cancer I was so afraid. I started shaking like crazy. And then when I got to the OS and she reassured me, I was kind of angry with the Dentist for suggesting such a thing. I thought "how dare he say Cancer, when according to the OS, it so clearly is not Cancer?" I guess if I would have heard something in the middle, it would have been better for me. And the other thing was the length of time between biopsy and results. It was more than two weeks. I started to get the feeling that no news was good news. Certainly if I haven't heard anything yet, it isn't anything bad. Of course, everybody else reassures you that this is the case. I have a coworker that is a 2 time stomach cancer survivor. She told me that if it were cancer, I'd have heard in a couple of days. If they suspect cancer, she said, they put a rush on it. But my OS didn't suspect cancer. I guess it's truly water under the bridge now. It truly didn't affect my care. I am getting the help I need and that is the important part.

Thanks for your support. Oh, and for giving me my morning chuckle.

Have a great day!

Mark,

Your message gave me a good laugh. Having a beer while watching your wife mow the lawn, that's funny stuff. Sounds like my hubby.

You are right about the opposite; I think if a Doc said "cancer" and then it wasn't, I'd have been upset about that too. In fact, when my Dentist said cancer I was so afraid. I started shaking like crazy. And then when I got to the OS and she reassured me, I was kind of angry with the Dentist for suggesting such a thing. I thought "how dare he say Cancer, when according to the OS, it so clearly is not Cancer?" I guess if I would have heard something in the middle, it would have been better for me. And the other thing was the length of time between biopsy and results. It was more than two weeks. I started to get the feeling that no news was good news. Certainly if I haven't heard anything yet, it isn't anything bad. Of course, everybody else reassures you that this is the case. I have a coworker that is a 2 time stomach cancer survivor. She told me that if it were cancer, I'd have heard in a couple of days. If they suspect cancer, she said, they put a rush on it. But my OS didn't suspect cancer. I guess it's truly water under the bridge now. It truly didn't affect my care. I am getting the help I need and that is the important part.

Thanks for your support. Oh, and for giving me my morning chuckle.

Have a great day!

Hi, Amy. Your story sounds much like mine. My dentist overlooked my cancer, which began on my upper right gum, by the cheek. I complained of tenderness in that area, and I also complained of ear pain on that side, which is noted in his very brief notes. He noted "some pocketing." At the next visit, six months later, the lesion was still there, and he cauterized it!!! He still called it a periodontal problem, or an injury. I doubt that he even read his tiny little note from six months before. He did not have me return for him to check whether or not it improved. Then, two months later, when I returned because I noted that there was something not right on the inside of my gum, he scraped and cauterized it AGAIN, calling it ANUG (which used to be called "trench mouth" in the olden days.) Never did he instruct me to return for him to be sure that the lesion resolved, and never, even when it was obvious that this lesion had spread from the outside to the inside of my gum and onto the hard palate, did he recognize it as cancer. When I returned the following day, insisting to be seen, he sent me to the periodontist, who immediately recognized it and sent me to the oral surgeon, who took a biopsy. The dentist is clearly at fault for "failure to diagnose" and he certainly allowed my cancer to progress and necessitate a more extensive surgery. I have no idea yet whether this delay will cause me more problems, such as metastasis or recurrence. Needless to say, he will not be seeing me professionally again!

Dentists have a grave responsibility in the area of early recognition, and the public MUST be informed about the danger signs of oral cancer, and how they can take more responsibility for their own oral health. In my case....and in yours, Amy, ...we were doing what we thought we should.....getting regular check-ups with what we thought were well-trained dental practitioners.

I think that one very simple thing, at least in my case, that would have made a difference, is simply to have the patient return for a quick check to see if a lesion does or does not respond to treatment after several weeks. This would have saved me 8-9 months of allowing this cancer to continue to grow in my mouth. I know NOW that I should have checked it myself, but I was not told that there was any concern, nor was I instructed to check it. He simply said, "That should take care of it." It didn't!!

August,

Wow, your story and mine really are very alike. They mentioned ANUG to me also, but the hygenist pointed out that this would be the first case she'd seen where it was localized and not all over the mouth. The Dentist agreed. I am not holding too much against my Dentist here. Yeah, he gave me the "oral cancer negative" thing back in May. But once I came back, he promptly got me the care I needed. But I can't help but think that in May, this was still in pre-cancer stages. Maybe not, but you never know.

I am pretty new to all of this, so I don't know a whole lot about the different surgeries and such. Mine is on the lower jaw, but I am wondering if it is somewhat similar to your surgery? I am just wondering what to expect after surgery. I am having 3 teeth removed and part of my jaw. He doesn't think he'll have to take any nodes from my neck, but he'll decide that during the surgery. The PET Scan indicates that this has not spread from the gum, but he said that sometimes when he is doing the surgery, he sees more than what the scan shows, in which case, he'll remove some nodes. I am afraid about eating and talking, though he tells me that I shouldn't have a problem with these things. But I still can't help worrying about it. Did you have any issues with those things? How about your spirit after surgery? I am expecting to feel relieved that the spot is gone, but upset that so are some of my teeth. It's just teeth, I know. And they will reconstruct it later. But still it's giving me an uneasy feeling.

I can't wait to get to the surgery point. You know, it's very strange to be able to feel and look right at your cancer. I imagine that other kinds of cancers bring their own horrible stuff, but somehow, being able to look in the mirror and see the crap creeps me out. I have quit looking myself, but others ask to see it. Just last night, a coworker wanted to look. Um, I am not a sideshow.

I hope we can keep in contact. I love the messages that I have gotten from everyone. But it's nice to have someone that has had (sort of) the same thing as I. Also, I haven't seen any statistics, but according to my OS, cancer presenting itself on the gum is pretty rare. It seems so, because most of the internet stuff you find is geared towards other sites.

Have a good day.

Amy
I had the same surgery as you are going to have. back in June. I suspect mine was more extensive than yours will be since they removed about 40% of my jaw and rebuilt it with fibula. Also, I had a complete neck disection as well, along with tissue transplants from my arm.

That said, I woke up able to talk, and started eating within 4 days of surgery. Hang in there, and if you have any specific questions for me, please ask away
Wayne

So tell me, how long was your recovery. How soon did you feel good again. My Doc says 2-4 weeks, does that sound about right? Though yours was more extensive, it'd be nice to have something to compare it to.
months.

And how are you feeling now, 6 months later?


Amy

Amy,

Unfortunately, delayed diagnoses like yours happen all too often, which is why it's so important to continue to get the word out about early detection. I was told over and over again by my dentist and my PCP that the suspicious (and painful) area on my tongue was nothing serious and that it would likely resolve itself. When I insisted on seeing a specialist, I was referred to an oral pathologist at a major dental school who categorically told me that it couldn't possibly be cancer because it hurt and because as a non-smoker I didn't fit the oral cancer risk profile. I finally ended up getting to an oral surgeon who did recognize the seriousness of it, and quickly performed a biopsy, which led to the start of my treatment.

My surgery was somewhat different from yours, so I can't comment specifically on what your response might be. However, most of us here who have had surgery have found it much easier to deal with than radiation -- I know my tongue and neck were healing quite well within about 3 weeks after the surgery was done.

Keep us posted as you go along -- you'll continue to find lots of support here.

Cathy

Amy, I see that Wayne has had the exact same surgery as yours, but I am still willing to answer any questions that I can for you. I was pretty alone with my surgery, not knowing about this site and not knowing anyone else who had had such surgery, and I want you to have all the support that you can get.

My surgery was on the top. I lost five teeth, and the accompanying maxilla ( the upper jaw bone.) My four front natural teeth remain, as well as the rest of my teeth on the "good" side.

My surgery was different from yours in that the removal of the maxilla and oart if the adjacent hard palate left a communication between the mouth and the sinus cavity above it. Patients with this type of surgery must wear an obturator...like a retainer....like dentures....sort of.....It attatches to remaining teeth and has a 3-dimensional part that goes into the opening to seal it off so that the patient can speak and eat and drink. Without it, all of these functions are difficult or impossible.

One time I forgot that I had the appliance out of my mouth, and I answered the telephone. After mumbling some sort of greeting, I had to hang up, since I couldn't hold a conversation! I hurried to put my appliance in, and when the person called back, I answered, and they said, "The funniest thing just happened when I called your number......" I just played dumb!

anyway....your surgery will be different from mine. I dona' tknow if they will do some sort of reconstruction at the time of surgery or not. Maybe they will just put a plate or bar across ......You will want some help with your children for a couple of weeks. And yes, it is "only" three teeth and part of your bone, but it is an important loss to you, and you will feel that loss. You will grieve for it. Head and Neck surgery seems so personal, because your head...your face.....are how you present yourself to the world. It's hard to have a condition that affects how you look, and one that others can see at a glance. But you will come through that wondering, unhappy time, and you will realize that you are lucky......that you didn't lose a leg or an eye....or a hand.....and that your surgery will not keep you from doing the things that you love. You might even not have your face changed at all, but if there is a change, accept it as who you are and as your battle trophy and a sign that you have fought an enemy and won!

Ask any question that you wish.

Hi Amy,

I'm sorry to read about your situation and I want to wish you luck on January 12th.

I always wonder where the theory that if it doesn't hurt, it can't be cancer, came from. I see this so many times on the board and I know, that I had pain in my tongue before my diagnosis was made. Also, any sore that doesn't go away in a maximum of three weeks should be biopsied.

I can't tell you how many of my patients have given me a hard time when I suggest a biopsy. You would be amazed. Since my cancer, it has gotten a lot easier to convince them.

I feel like I need to comment about whether a doctor should tell a patient whether or not they think that they have cancer. This is a topic that really has no right answer. If you tell someone that you think it is, they will worry until the results come back. The worrying won't change anything, and they have been miserable for nothing if the results are negative. On the other hand, I think it's wrong to play it down and say it's not, when it could be. After all, the biopsy is being done because "it could be". My choice has been to say that it probably is nothing, but we will have to wait and see what the results are. This to me, takes the middle road and doesn't get the patient any more upset than they already are, just because they need a biopsy.

In my case, neither I, my oral surgeon in my office, my hygienists or my partners thought I had cancer. SCC can look so different each time it presents itself, that unless it has a classic look, anyone can be fooled. However, as I said before, putting off a biopsy longer than 3 weeks, is not a good practice.

You will probably have some options for replacing your missing teeth with some grafts and implants. Depending on the amount of bone removed, a fixed bridge may also be possible. Right now all you have to do is get the surgery done and get on with the healing. The waitng is a very difficult thing to do.

Again, good luck and keep us posted.

Jerry

My lesion also was painful. I have a tendency to have aphthous ulcers on the gums of my rear molars, probably caused by small chewing/brushing injuries, and they produce a painful, tender area on my gum. My cancerous area felt just like that.

Sorry to be slow replying Amy. I was feeling pretty good by four weeks. By the time radiation began at 10 weeks I was feeling quite good...that changed of course with the radiation. The biggest ongoing problem I have had is with the doner site on my leg. They removed the entire fibula to rebuild my jaw, and I have some nerve damage as a result. A bad limp and limited walking are what I'm stuck with, BUT, I'm doing it cancer free.
Wayne

Wayne,

Don't feel bad about being slow to respond, it's a busy time of year.

Did they do all of your reconstruction in the same surgery that they removed the cancer? I understand I'll be having a couple of surgeries to do that. But in my case, I don't think I'll be losing quite as much jaw as you did. Maybe I'll be okay without it for a while.

You have a great attitude about dealing with the limp because you are now cancer free. It's amazing the things that don't seem like such a big deal so long as we can still be alive. Sure I'll be mourning the loss of part of myself, but so long as I am around to see my kids grow up, I can do it. That's what is keeping me going for sure. I grew up without a Mom and it pretty much sucked. I don't want that for my babies.

Amy

Amy,
Yes, I had the full meal deal done, all at once. 17 hours on the table, they removed the tumor and the inside of my mouth on the left of the tongue, rebuilt the jaw with fibula and titanium, took tissue grafts from my forearm for reconstructing the inside of my mouth, and then skin grafts from my thighs to close up the donor sites on my arm and leg.

Although I dreaded the extended time in surgery, in retrospect it was all done at once, no partial healing and then more surgery
Wayne

I again wish to thank you all for your messages. I am having a hard time finding the support I need elsewhere. Don't get me wrong, I have plenty of family and friends that are so very helpful and loving. I am not even kidding when I tell you that I am on the prayer list for 11 different churches. My Sister and one of my Brothers are so very helpful when it comes to child care and that kind of stuff. They also offer support, the best they can. But the support that I have been getting from people close to me is that I should really quit worrying because it's pretty minimal cancer. They tell me that "you'll be fine". I know they all mean well, but it makes me feel like they are minimizing the whole situation. I guess they don't know what else to say. And, they are probably right, I will likely be okay. But I have Cancer. Yes, it was caught early. Yes, I probably will be "fine". But as you all know, when you have this DX, you are scared.

I know that most, if not all of you have had your TX. Or are going through it right now. My fears are likely in a different stage. But aside from the fears about the surgery, I am feeling really emotional. Even though I have been told that I should be okay, I am still really sad about this whole deal. I am a strong person, I don't rattle easily. But this has gotten me rattled.

My hubby and I had an argument tonight about Christmas. We are financially in a bit of trouble now. He is a construction worker and winter is slow. I will need to take time off for surgery, which isn't going to be covered by STD because of the pre-exisiting clause. So money is tight. He is upset that I bought so much stuff for the kids for Christmas. The thing is, I didn't spend very much money. I did some really good sale shopping. He thinks that they have enough already. I agree, they have plenty of toys. I know that this holiday is not about how many presents, but more about family. But they are little kids. I want them to wake up to a few things on Christmas morning. I am really looking forward to seeing their excitement. I want to have this memory to get me through. I figure I'll be out of commission for a couple of weeks. I just want a good memory out of this. Hubby thinks that I am crazy, I think. He thinks that I am "going overboard" because I think this is my last X-Mas. Well, I don't think that this is my last one. But is my last Christmas before my TX starts. It is significant to me. Have I completely lost my mind?

In all fairness to hubby (Brad), I think he is scared. Even though my outlook is pretty good, I am sure he is worried. He just really sucks at showing his support. I really know he supports me, he just really stinks at it. That is why I am so very appreciative of you guys (and girls). You people are awesome.

Amy

Amy, Brad is no different than any other spouse/caregiver...he's as terrified as you are. I was told early on in my whole journey that cancer is one of the true acid tests of a relationship. You find out a lot about what you're both made of.

My wife was and is the one who, when I would get feeling too overwhelmed by everything, would bring me back from the edge of losing it with rational, compassionite discussion.

On more than one occasion, it was through a swift kick in the you-know-what that I needed, and she was there to give it to me. Without her, I would NOT have survived this ordeal.

She has been with me every Second of every Minute of every hour, of every day that I have fought this disease. After surgery, I suffered respiratory and cardiac arrest sue to complications, and was in a chemically induced coma for 5 days.

They tried to get her to go home but even security wasn't going to convince my 120 lb. wife of anything. She took blankets off of a cart, cushions from a waiting room couch and made a bunk on the floor beside me in ICU, until they fully understood that cooperating with her was going to be a lot easier than fighting her.

I had so much nonense go on with my family during the early stages of my diagnosis that I severed all contact with my Mother and sisters; they were simply making everything much more difficult to deal with.

Some people simply don't deal with this diagnosis well at all; another fact. I called the noise ( and it was noise, not communication or support) "hollow talking".

It came from a variety of sources; people who simply did not know what to say, or people saying exactly what you didn't need to hear.

You and Brad will have the toughest time during your treatment. In may ways, Brad will have it worse. You see, your choices here are really pretty simple...be treated and live, or don't. You and I know what your choice is, so does Brad.

I said it will be worse for him because he will be watching the woman that he loves, the Mother of his children, get sick, probably sicker than he's ever seen her before, and will be unable to do ANYTHING for you but offer you his love and comfort.

Trust me, and convince him, that is ALL you need to get through the next phase. Give the rest of your support network specific jobs to do, instead of letting them come up with ideas.

Assign them the things that you normally look after in your life, and forget about them. They will feel like they are really helping you, because they are. You won't have to worry about those tasks you gave away and can concentrate on you, and getting well again.

Enjoy your Christmas. We ALL spend too much money on the kids this time of year. That's a fact. Our kids are all adults, and it hasn't changed a bit.

There will NEVER be enough money, yet we always make it through somehow, just like you. In 20 or 30 years, you can look back on the Christmas of 2006 and laugh about the concerns you and Brad may have over money spent, I garauntee it.

In the big scheme of things, it's really not that important. What is important is this is the first Christmas that cancer is part of your life. It'll be an unwelcome guest this year, and each year after this one, you'll make sure it doesn't get invited back for dinner, O.K.?
Wayne

Wayne, what a phenomenal post. There's a lot of teamwork involved in surviving this disease and you've captured what's really important so well. You and your wife clearly passed that acid test of relationships.

Amy, you're not nuts, you're trying to create a wonderful memory to get you and your family through the rough times ahead. Take Wayne's advice and enjoy your Christmas. I look for sales too, you really can get a lot more by doing that.

Regards JoAnne

Wayne, I was reminiscimg about my dad tonight and how I'll miss him and mom at X-mas time. Well wayne I don"t know how old you are but I,m 50 and I can't help but see my dad in you. Your fight for not only your life but to think beyond that and appreciate your wife and her struggles as well is a good life lesson for many of us. Amy I think Wayne is a good example to follow.
Good luck Amy.

JoAnne, Mark,
Wow. Thank you for the compliments. I'm very touched. Mark, I'm only a bit older than you at 51.
I have spent my adult life being the guy in charge. I manage a major international airport and have a lot of people looking at me for decisions every day. This disease was one thing I could not rule out of my life by sheer strength of will; I needed help, and not just from the medical professionals.

In many ways I am glad that cancer found it's way into my life. That sounds really sick, but I am. Without cancer, I would not have had the humbling experiences that I've had, and I would never have truly known how amazing my wife is, or what decent, caring adults my children have become.

The same holds true for family and friends. I have had my life enriched by these discoveries, far more enriched than deminished by what cancer has taken away. For that, I will be very grateful for the rest of my days, but especially when I spend Christmas Eve with them all. I
certainly didn't expect to be here for the holidays six months ago.

I will also spend some quiet time tomorrow, by myself, thinking about those people who fought the same battle with this demon that we have, and lost.

We're about to hit the highway and start "visitin, and eatin" the important parts of Christmas. From my heart I wish EACH and EVERY one of you the finest things, and the finest times over these holidays. They truly are a blessing to all of us
Wayne

Wayne,

Thank you for your message a few posts above. I am not gonna lie, it made me cry. But they were happy tears, sort of. What you had to say really made me think about what is really important.

Even though I am only getting started in this battle, I am also feeling like cancer has given me a gift. In the "waiting week" where I didn't know the extent of my cancer, I really took a "look see" at my life. Remeber, at the time, I thought it very possible that I might be dying. I am pleased with some of the changes in me.

You see, I don't really ever sit down. Well, I do, but it usually comes with another task: fold laundry, balance the check book, pay a bill. Nohing fun really. I work second shift, Brad works days. We don't usually see each other during the week. But I am always in fast forward. I have three little kids. There is always something to be "done" around here. Cooking, cleaning, etc. So after my DX, I started taking note of what goes on around here. The truth is, I put my kids off. I give them the "I am cleaning" reponse all of the time. Don't get me wrong. I love my kids very much. They are well taken care of. But when they ask me to do something, I often tell them "NO". I have housework, or errands, or work.

So the very day that I found out I had cancer, I had an "ah-ha" moment. At 1:45, I found out that I have cancer. I came home. I cried. I tried to rest. I went out and bought expensive steaks for dinner. The origanl meal was tater tot hotdish, but that just didn't really seem fitting for the occasion. Just as we have a nice meal to celebrate good news, we decided that a nice meal was in order for the sucky of news too. So we ate. During dinner, Samantha (my 5 year old) asked if we could drive around and look at X-mas lights. I said "yes, we can go right now". She was surprised. I could tell by the look on her face. She wanted to know if we had to wait until I cleaned up the dinner mess. "NO". Do you have to do any laundry first? Again "no". We drove around and looked at lights. We realized that the more modest the neighborhood, the better the display. We got lost. We came home and had hot cocoa and candy canes. It maybe the most fun I have had in a long time. But if I didn't have cancer, I don't know that it would have happened that way. First of all, since I work at night, we don't get to eat a meal together very often. And when I am here, lots of stuff seems to take precident over what is really important. I actually have cancer to thank for realizing something very important. I used to think that there would always be time later to look at the X-mas lights. Now I see that there is no time like the present.

I have a really facinating life story. I don't see it the same as others, but even I'll admit that my life so far has been an interesting one. I have had many people tell me that "they" should do a documentary on me. The life I have lead so far is unusual, to say the least. It makes up who I am. It fuels the "I am scared because I have cancer" thing. Maybe when it isn't 2:48AM on Christmas morning I will share it. Heck, I don't know if anyone is even interested. I haven't been on here long enough to know if people share more than cancer stuff. We'll see.

But for now, I just want to wish you all a very Merry Christmas. I am enjoying mine. I just got through playing Santa, which can be quite tricky if you are'nt careful. At least I dodged that bullet tonight. No kids came down and caugh me in the act. Yeah Me!

And Wayne, I talked about you at Christmas Eve dinner tonight. I couldn't remember your wonderful post word for word. But it didn't matter. I just told them all how you are one smart guy. Smart and caring, that's what i told them. Thank you for helping me to see the light.

Good night

Amy

Amy,

Congrats on playing Santa and not getting caught!

I'd love to hear your story when you have time to post it.

Merry Christmas.

Loretta

Amy,
Your experiences and Wayne's mirror many insights and emotions that those of here have shared. I have heard from several people, as strange as it may seem that "cancer is the best thing that ever happened to me." Certainly it is not the best thing that happens to all cancer victims as we can attest to here from the losses and suffering of dear friends.
But, having said that, I , like Wayne and you Amy, had my life and perspective changed in positive ways from cancer. I found out how many people loved and cared about me. I found out what was important in my own life, and although I am far from a "smell every flower" Pollyanna, I certainly do appreciate whatever time I have left on this earth and I am thankful that I am still here and living such a good life, and able to share it with my wife, children, 88 year old mother, siblings and friends.

I wish the best to all of you.

Danny G.

Amy, you made my Christmas. We just got back home from spending Christmas Eve with my wife's family ( on a farm 4 hours from our home).

Being a farm, internet is not on the grid to any degree yet, and I admit to spending a good bit of time last night wondering how you were making out. I'm so pleased that I was able to help in some small way.

I hope that your day was FILLED with the magic that is Christmas. You certainly filled my day with it

Merry Christmas one and all!
Wayne

Wayne,

I can honestly say that I had a great Christmas. I didn't dwell on cancer too much at all, though I tried to use it as an excuse when my sister wanted to smack me because I was poking fun at her. "Certainly you wouldn't hit a girl with cancer would you?" We laughed about this. Of course she wouldn't hit me. And just between us, cancer or no, I could take her! The only thing missing from today was snow. Can you imagine? Minnesota and no snow for Santa. It's pretty rare. We need the blanket of white to cover up the brown grass. My living room looks like ToysRus vomited in here; if we had a fire, the place would melt with all of the plastic. I can honestly say that our decor is now "early Fisher Price"! But it's okay. Kids are only little for such a short time, I can live with the mess for now.

And this might be one for the record books. I think that it is entirely possible that I am the only cancer patien ever to gain 8 pounds in the month following thier diagnosis. I am not even kidding. If it is food, it's for me. I have not held back one tiny bit this holiday season. If I felt like having seconds (or thirds) I did it. I have struggle for years with my weight and have recently lost a ton of it. Eighty pounds to be exact. I have about 30 more to go. Well, now I guess it's 38 more to go. I decided that this was the year to quit worrying about my calories during the Holidays. I am calling it the "Amy's first annual holiday food fest". I am going to quit worrying about gaining ten pounds between Thanksgiving and New Years. I kind of hope to gain ten pounds every year. It'll give me something to do in January. Don't worry, I'll do good the rest of the year. Or, most of it anyway.

So to sum it up: Cancer is the best shitty thing to have ever happened to me.

And just in case you are wondering, I am going back to eating like normal tomorrow. I'll probably splurge on New Years Eve, but I gotta get back to normal. Gotta have all of the fruits and vegetables and other good stuff that I can handle. I want to have my strength for the surgery.

Merry Christmas to all, and to all a Good Night!

Amy

Okay, this is going to be a long one. If you don't feel like reading it, that's okay. It's not about cancer so much as it is about who I am. I really would not expect strangers to be interested. But I realized that you guys aren't really strangers at all. From the first day on this site, I have felt really embraced by everyone. I guess that somehow, we are all related in this disfuctional family that is called cancer.

Here goes:

I was born to a Mother that was 16 years old. With the help of her parents, she realized that she was too young to care for a child. Then I was adopted into a wonderful family. The people who adopted me are my parents. I will always refer to them as my parents, because they are. Their names were Pete and Elaine. They were both 45 when they adopted me. They had 5 biological children, all boys. They wanted a girl, but were afraid of trying again. They figured they'd probably end up with another boy. Not that there is anything wrong with boys, but they needed some pink in thier lives. So they adopted a girl, who is my sister. We are not related by blood. A few years later, they decided that she really shouldn't be the only girl in this sea of testosterone, so they went to adopt another girl. That's where I came in. My childhood was a good one, but there were some serious hiccups along the way. When I was eight, my Mom died of lung cancer. She was sick a while before she died. I was pretty little and remember little of those days. One memory stands out. I was at a friend's Birthday party and my Mom came to pick me up. She was very ill at the time. She had a massive bloody nose and was holding a purple wash cloth to contain the bleeding. I was mortified. I was so embarrassed. I was 7. I didn't realize that the woman would be dead in a mater of months. Though I said nothing, I still feel just horrible about that. She didn't want to be that way. She didn't want to embarrass me. Heck, she was probably embarrassed enough for the both of us. I remember very vididly the conversation where my Dad told us she had died. He was so very distraught. This was his High School Sweetheart. He'd lost her. He was left with seven kids to finish raising, all alone. My Brothers were all older at the time. My youngest Brother, Chirs was 17. My oldest Brother was almost 30. But my Father was now soley responsible for my Sister, who was 12 and me, who was 8. After my Mom died, my Dad never slept in a bed again. He would sleep on a couch, he would sleep on the floor. Never, ever did he sleep in a bed again. He remarried quickly. Barely one year later he married a woman named Ruth. She was not prepared to come into to a ready made family such as ours. She was widowed by a husband who died at the home of his mistress. Ouch! She had no children of her own. She didn't have a clue about Mothering young girls. I am sure that my Dad remarried so quickly because he felf that he needed to have someone to Mother my sister and I. Ruth was an alcoholic. She was functional, but she was an alcoholic. She went to work and then came home and drank. My Dad was blind to this for a while. You see, he worked a job where he didn't get home until nearly 10:00 each night. She was in bed by then, sleeping it off. He did get wise to the situation later on, but by then he felt that he couldn't go. I do believe that he loved this woman, but it was never the same as the love that he had for my Mother. Though there were many challenges along the way, I loved Ruth too. When I was a mere seventeen years old, they retired. They moved to Wisconsin; to a city about 3 hours away. They put me up in an apartment. I was going to be eighteen in six weeks. Once shool was out, I could make my way on my own or I could move with them to Wisconsin. But I was 17. I didn't realize that it would be stupid to toss away all of those years of schooling just to have a bit of fun now that I had no grown up to make sure I actually got to school. I blew it. I didn't do anything fun. I stayed up late, doing God knows what. I slept late, missing all of my classes. I didn't graduate. I didn't really care all that much. My Dad was disappointed, but jeez. I know that I did the wrong thing, but he was the grown up. He shouldn't have left me here alone. I did eventually get a high school diploma, but not until just a few years ago. Please don't get me wrong, my Dad was an AWESOME guy. . He and I were very, very close. I truly believe that he did what he thought was best. You see, Ruth had lots of money. He didn't. He really thought that he must do what she said because she was his future. As a parent myselft, I can't imagine doing these things. I loved this man very much and I am really sure that he meant no harm. So off they went. They moved away. I needed a job or I needed to move to Minong, Wisconsin. I didn't want to move. I found a job. In 1994, Ruth died from liver failure. A direct result of her years of drinking. And then in 1995, my Dad died from a heart attack. He was all alone in his house in the woods. He called for an ambulance and then ran around the house pulling out all of his important stuff: titles and keys for cars, wedding rings, safety deposit box keys. And then he sat down in his recliner and died. I still get teary eyed just thinking about him being there all alone.

When I was eighteen and a half, I met Brad. Right from the start, I knew that he was "the one". He made me feel safe. We got married 2.5 years after we met. It was my 21st Birthday that we got married. He is 5 1/2 years older than I. We spent a year or so just having fun. Then we decided that maybe a baby would be in order. Turns out, that wasn't meant to be...at least not yet. We tried for many years to have a baby and nothing ever happened. I probably would have headed in for fertility treatments, but Brad was opposed to that. He was of the school where it would happen if it was God's will. I am sure that I could have talked him into it if I had tried harder, but it didn't come to that. In October of 2000, I found out that I was pregnant. It was a real shock. We were so thrilled. I had some complications, but in June of 2001, Samantha was born. We had just celebrated our 11th Wedding Anniversary. We figured that this was a fluke. All of those years and nothing. We truly thought that this would be our one and only child. But again, we were wrong. When Samantha was only 9 months old, I found myself pregnant again. In December 2002, Kelsey was born. Our family was complete, that's what we thought. By this time, you would think that we'd have figured out where babies come from. But when Kelsey was 8 months old, I found myself again pregnant. Bradley was born on Mother's Day, 2004. I gave birth to 3 children in less than three years. Wow. What a change of lifestyle for us. We thought we'd never have kids. I had a very good job at Blue Cross Blue Shield when my first was born. I fully intended to go back to work. But when my maternity was over, I wasn't willing to be away from my baby. We were not financially prepared to have me stay home, but we worked it out. I returned to work about 18 months ago at another company and now work 2nd shift to minimize the child care situation.

After Kelsey was born, I had really started having thoughts about my Birth Mom. Though my parents always encouraged me to search out my bio family, I never really felt the urge. Until I had kids of my own. Once I held my babies in my arms, I realized that they were the only people in the whole wide world that I was related to by blood, or the only ones I knew anyway. Though I was interested in meeting my Birth Mom if she would go for it, I really would have been happy just to find out some health history information. I started the search in the Fall of 2003. She was located in the summer of 2004. There is no way I could have imagine that this would turn out they way it has. This woman has embraced me and my family right from the first meeting. She lives in Alabama but has traveled to see us several times. I have been to see her twice, once alone, and once with my girls. She is different from us, to say the least. We live the average lifestyle and sometimes struggle financially. Our house isn't spotless every minute of everyday. We work for other people. She is financially well off, owning her own business. She lives in a beautiful home, one that is always spic and span. She has been married and divorced three times and never had any other children. She admits to feeling a bit sad that she wouldn't ever have any Grandchildren. Now she has 3 of them. My finding her has changed both of us for the better. Before I searched for her, I worried about what I'd find. Was she in prision? Would she have job? Would she hit me up for money? Then it turned out that she was financially, WAY better off than us. I certainly wasn't after money, we have our own and get by just fine. But I can see where that might have scared someone in her position off. But it didn't, she is forever going to be a part of our lives. I know that my Brother Chris feels threatened by my relationship with her. He feels like I am disrespecting my parent's. But I don't feel that I am. I have not forgotten about them, nor will I. My Birth Mom has an important place in my life, but she isn't replacing anyone.

And now I have Cancer. It worries me a lot, even though I have been told that my outcome should be a good one. You just never know for sure, it's cancer after all. Cancer isn't something to take lightly. I know it is nonsense, but I can't shake the feeling that I have let so many people down. I waited so long to have my kids. The thought that I might leave them breaks my heart. I waited 35 years to find my Birth Mom. I know that it would about kill her if something happened to me. And Brad. I know he'd get by, he'd have to. I could never forgive myself if I left him to raise these kids alone. My Mom died when I was eight and I barely remember her. My kids are five, four and two. If I died, they'd surely never remember me.

As you can see here, all of my life experiences have brought me to the feelings that I have now. I guess that it is sort of interesting to see just how what you have been through affects so much in your life. The one thing I'd like to take away from my journey with cancer is this: I want to know that I am a better person than I was before. I want to know that I never take anything for granted again. If I want to do something, I am going to do it. And I want to never miss an opportunity to tell the people I love, just how much they mean to me. I guess that's more than one thing,isn't it?

Thanks for taking the time to read this, I know it was long.

Amy

Amy, just reading what you've written tells me that Cancer has already changed you for the better. I'm pretty sure it will continue to, but I'll offer up a little advice to you while you start your journey through the treatment process. Remember...cancer does NOT define who you are.

Don't ever say, in public or in private that this demon MAY beat you. Don't let it, period. It can and will do a lot of things to you physically, and treating it will not be pleasant but there are a lot of things cancer can't do

It can't cripple love. It can't shatter hope. It can't corrode faith. It can't destroy peace. It can't kill friendships, and it can't suppress memories. It can't silence courage, and it cannot invade the soul.

It can't conquer your spirit if you refuse to let it. You talk about feeling guilty...stop it. You did not wake up one morning and decide to have cancer; you have nothing to feel guilty about.

It's already given you the gift of insight. There are other gifts that it has to offer if you're prepared to take them, but like anything of value, it won't come easily. The treatment is harsh, but there will be good days, and lots of time to reflect. Keep doing spontaneous things...looking at Christmas lights through the eyes of a child is an amazing experience. So are a lot of other things.

It doesn't define you, but you can use it to your advantage in defining who you really want to become.
Wayne

Wayne,

Again, thanks for the good advice. The part that I am still having a hard time with is the "don't ever say that it may beat you" part. My head knows that in my stage, it's really doesn't have much of a chance of beating me anyway. But when I am lying in bed at night, my mind goes about a thousand miles a minute. One of the thoughts always comes up "what if they were wrong, what if I am one of the 10% that gets false negative results from the PET scan, what if it has already spread?" After reading your message, I vow to try to stop this. It isn't healthy, and I know that.

In fact, I recently lost a dear friend to lung cancer. He was 55 years old. By the time his cancer was discovered, he was terminal. He had some treatment, but only to lengthen his life by a few months. There was never any doubt, he would not be cured. I visited him exactly one week before he died. He spent the final weeks of his life in a wonderful hospice home. On my last visit with him, just days before he passed away, he was still making plans for the future. He told me of the trip to the cabin that he planned for the following summer. He told me that for his 60th Birthday, 5years away, he was going fishing in Canada. At the time, I felt really sorry for him. I was thinking that his mind wasn't right, and it probably wasn't. But he was with it enough to know that his days were few. He he chose to dream and hope and plan. I think that's a pretty good example to follow too. If a guy that has just days left of his journey can dream about what he'll be doing in five years, so can any of us. RIP Bob, I miss the heck out of you!

Good night!

Amy

It's tough to do, Amy. There is no question about that at all, but you can't for even a second doubt that you are going to beat this. You are. Bob beat his cancer too, don't you see? He refused to let it defeat his spirit, and he refused to let the cancer define who he was.

The outcome for him was not the one he would have chosen without a doubt, but he did not let it defeat the person that he was.

You can play the "what if?" game forever, and it won't change one single thing. You already have the news we all dreaded getting; you have cancer.
"What if?" won't change that.

I'm not suggesting you deny the reality of the situation; cancer kills, and does so very effectively. What it doesn't do is kill everyone it strikes. Far, FAR from it.

You'll be amazed as you move through the treatment process how many people you will meet who are cancer survivors. YOou have already met a lot of oral cancer survivors here.

Could you get a false scan? Of course. You could also get hit by a bus crossing the street tomorrow. The odds of both are pretty slim, so don't sweat it O.K.?

If sleeping is a problem, talk to your Doctor. There is NO reason to be losing sleep over it.
Wayne

Wayne,

Because you are a cancer survivor, you know a lot of what us "new" people are going through. You know certain feelings first hand. But just because you have survived cancer, that doesn't make you an expert.

What makes you an expert is this: you are a good person. You have real feelings for people, whether you have met them or not. You care about others, just as you have been blessed to have others care about you. And I truly doubt that cancer is the only reason that you are such a wonderful supporter. I know that even before your cancer, you were an amazing person. And I am really starting to believe that at least one of the reasons you were put on this Earth is to do what you are doing on this site. For your helpful insight is probably one of the best gifts that you have to share. I know that your family is blessed to have you here, alive for a long, long time. That is probably the most important thing to you, and it should be. But if there was another reason that you are here, I'd say it's to help people like me. Help us feel like we aren't crazy for having the feelings that we have. Though I am quite certain that you'll never admit it, you are a real breath of fresh air, a real gift to all.

I am sure you will think I am a bit crazy, but one wish I have when my treatment is done is to meet you face to face and give you a giant hug. I am not kidding here. I would really like to meet the man that is you. I am sure you think this is odd, but don't. Your words have really helped me and for that I am so thankful.

Give your wife and kids a big hug from me. Thank them for sharing you with the rest of us.

Amy

Amy, I can't tell you how much I appreciate your kind words. I'm so glad that I can help you feel a bit better about things.

My wife is the one who deserves the credit. I went through all of the same feelings. The "revelations" that I had during my treatment we spurred by her insight and compassion.

As for that hug....I'm looking forward to it!
Wayne