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