Thanks Tim.

I appreciate the encouragment.

It's so HARD to stay positive right now.

I was ready to move on to the next phase. I had the 6 or 7 hour surgery only 7 days ago today, and this morning I felt better than I did BEFORE the surgery!!

Did your surgery path reports indicate Angiolymphatic invasion or perineural involvement...? I would guess not since you had no nodal involvement.

We both have RIGHT TONSIL, but I don't see what stage you were, maybe III? Or Stage I, since there was no metastatic malignancy..?

Thanks for the kind words!

I had one hot node that was taken care of by chemo and radiation. My surgery came after the rad/chemo. Technically, I was stage III (T2N1).

Keep your chin up!

Tim

It's SOOO hard!

I am normally very positive and optimistic.

Today, I just had a total meltdown, starting to cry uncontrollably.

I had received a gift of a new wine from a local vintner. It's his first year of this crop (a new Pino Noir), and he said "keep it in the cellar for six months before opening it"...

It hit me!! I might not be alive in six months! I feel so much gloom.

Since my cancer is so advanced, should I be working towards quality of life instead of treatments which are likely to fail anyway?

I feel so lost...this is unfair to all of us!

Mike, Tim's words are true. Forget the statistics! let me try another example: even if we imagine the statistics for your "Very" serious path report give you a 10% 5 year survival. How do you "know" that you are in the 90%? The answer of course is you don't! You could take the "quality of life" easy way out but if we lived our lives that way we would not make it past the age of three. After all, life was really good when our mother did everything for us and it went down hill after that.

Live one day at a time and try to stop looking into the future.

You need to fight this because there is always a chance that you'll win.

Unfair yes. This disease has made clear to me how life is unfair. We all have a bit of a pity party over this reality in our lives and it may be deserved. Remember though, how much of a blessing that you even have an option for treatment. That you have much more even now than 2/3rds of the worlds population. Look around and you will see people that are far worse off than you are right now. Yes life dealt you this and it isn't fun but you aren't blind, or in a wheel chair. We aren't born with a garantee there is no refund if you aren't happy with what you have. The choice is rather simple when you look at it: you either deal with it or you don't. You have already started dealing with it, keep on going. (and realize there might be setbacks)

PS I don't like that your ENT said that either and further let your oncologists deal with things they are trained for it.

I think you are 100% correct Mark & Tim..Thank you both.

Michael,

In answer to your question about my staging, the perineural involvemnt and lymphatic invasion referred to features of my primary tumor on my tongue, not anything in my lymph nodes (there are small lymph pathways all through your body so the angiolymphatic injvasion just menas that there were blood vessels or lyumph pathways that had become a part of the promary tumor). So I am a stage 2 because I have a tumor the right size for a T2 and no nodal involvement (as far as we knew--I only had a neck dissection on the tumor side and there is a small chance that there was lymph node involvement on the other side that wouldn't have shown up on the CT scans. It's a pretty small chance but large enough that I needed both sides of my neck, esp. the nodes, radiated.

Like you, I am into learning as much as I can about staging, risk factors, prognosis, and the science behind this. I firmly believe that for some of us, that is how we cope the best, while for others it's distracting and dismaying and they don't need that stuff to cope. Go with the styke that feels most comfortable to you.

But I will say that the more I learn, the more it's clear there's all sorts of grey areas. You don't have much time to make a treatment decision and it's true you will never learn as much as the experts, which is why it's also important to get expert opinions. Ask them for research to read that would justify their recommendations. The docs I ended up trusting were the ones who could produce that and who didn't treat me like an idiot in terms of my abiulity to underetand the research (I also have a lot of grad training in stats adn experimental design and I was very grateful for that in sorting the wheat from the chaff in terms of the research I found).

Let me know if I can answer any other questions you have. I saw you are going for second opinions next week which I think is great. be aware (you probably already are) that they will want path slides, most likely, from your surgery as well as the path reports so there may be some running around you need to do before then to get things sent.

Nelie
Nelie

Michael, we just gotta live each day, and hope to live antoher day. Do you need some mood elevating medication or tranqulizers to help you through this. Ask someone. Amy

Michael,
Do keep positive! Your doctors will do all they can medically, but YOU must do all you can with your determination and attitude! There were many, many days when my husband literally fought going to another radiation or chemo session - - he was so sick he just didn't think he wanted to work at it anymore. It took a very, very stern approach from me to 'change his mind' - - I had to remind him just what it was he was fighting for......in his case, it was his family. He had determined early on that no matter what the outcome, he would 'win,' but that those who love him might feel like losers. When the days were bad, I'd let him know that I wasn't ready to lose.... and that put things back in perspective for him.
I see the photos we took after chemo and radiation and surgery and recall how afraid I was that I would lose him. I look at him now and see a lot of the "old Tom" I love so much. He DOES look to the future because it is what he fought to see. He may never be 100%, but he's very happy that he's here to experience another day with us.
You keep the end of the rainbow in sight, Michael. We'll remind you often of the pot of gold waiting for you!
All our best
Tom and Nicki

I seem to be differing somewhat from what other people are saying in advice about staying positive, and that may be because my experience getting through this is as being diagnosed with stage II, which, let's face it, carries less scary stats with it (though I still found them pletny scary especially given that I had risk factors like perineural invasion).

So, anyway, I hesitate to say this but I will. Its about what worked for me, there may be other advice that is more suited towards what will work for you.

Speaking strictly for my experience, I needed to get through a couple of times of "meltdown" which included a lot of fear and despair in order to really reach total warrior mode in fighting my cancer. I'm glad I didn't try to numb those moments out too much with sedatives or pain killers because once I got through those I realized that despite all that, the one choice I had was to fight or not to fight and given that one choice, fighting was the only option I'd be happy with later. And I mean "later" as in if the worst case happened.

Of course if you can't seem to pull yourself out of despair for days on end the it's time for medication to help you with that. Depression can be crippling in fighting the good fight. But sometimes, going to that darkplace a little can be helpful in forming resolve.

I totally agree Nelie....I was not the patient and experienced a few "Meltdowns".
You just pick yourself up ..dust yourself off..and start all over again. Just like the song says.
You can handle this Michael... you and Seth and that big extended family you have.
Onward and Upward

Marica