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,
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

Michael,
I just visited UCLA and I loved it! Very up to date facility, extremely professional staff and warmth all over the place. The "waiting room" in the oncology area was huge and furnished as darling conversation areas with stuffed couches and end tables. Every Dr. had a support staff that came out and greeted you personally before taking you back. I watched others coming back while sitting in my room and each was accompanied by a positive, very personal nurse who was very aware of the person's status. I had a nurse take all of my records back before the appointment. Then met with an assistant Dr. who'd obviously read them extensively in the 1/2 hour wait. He knew my medical history from 1970! The big man himself, an expert in head/neck oncology, then came in and discussed every detail of the disease with me. And answered every silly question we asked over and over again. No sense of hurry. The place is awesome and worth a visit. When involved in support groups and even at USC medical ,people would tell me of UCLA success stories. I can see why. These guys are state of the art.
You sound so good for only 7 days. I still had all my feeding tubes then and couldn't talk yet. You are healing wonderfully. I know I had perineural in 1993 and it's never advanced in the brain nerves beyond what it was then. I didn't have positive margins in '93 and so they did rads. I had 21 nodes removed and a few were malignant. 2 new malignant ones have just shown up in the opposite side of my neck so it's creeping. But ACC is relentless. The Lung tumors are there and multiplying. But they can't do anything about any of them. The Dr. said to go enjoy life, have wine and dance and not worry. I'm looking to house swap with someone in Italy.
Hugs and strength. You are doing better then you know.

Ali Mae

Michael, you are my inspiration. I logged on today because I was feeling sorry for myself, sitting with a very painful mouthful of stitches and no answers. I wish that I had something inspiring or uplifting to say but nothing that I can think of would come near the mark. Your courage inspires me. It may not seem like it at the moment, but simply logging on and sharing is a big step in my books. I am thinking of you and praying for you and your family and also for your doctors that they may be guided with wisdom.

Oceanangel:

Thanks for the comments and you prayers!

Hope you are feeling better by now.

I just got settled in my hotel room in HOUSTON!

My flight got redirected to Austin first due to Dennis Storms here in Houston...

My appt is at 7:00 AM tomorrow!

I can't wait to meet the team at the world- reknowned(sp?) MD ANDERSON CANCER CENTER --

I'll be posting here right after tomorrow and let you all know what I think...

I hope to meet an Oncologist and Radiation Oncologists tomorrow and maybe a Dental Oncologist and Opthomologist.

I meet be here a couple to a few days...

It's a little bit lonely and I'm kinked up from being stuck on a plane for 5.5 hours.

But, I am feeling better everyday from the surgery. Still the 'disturbing tingly feeling in my shoulder, neck and chin...I've decided that "feeling" is my body EATING CANCER CELLS UP :-) That makes it all easier to tolerate.

Also, I am able to eat more today :-)

I am practicing opening my mouth more and more (Hmmm, can I fit this huge chocolate croissant inside) - Just kidding, I am eating ALKALINE items as much as possible, but glad I can CHUG water like I could 2 weeks ago. (pre surgery)

Anyway, hope everyone is great!! Talk to you all tomorrow...

Michael