Hi Gang:

Those of you who have gotten to know me over the last several months might have discovered that I'm kind of a "cut to the chase" kind of person (yes, I know this is both my greatest attribute and my biggest downfall).It's how we nurses function-find it, fix it, and move on to the next life that needs to be saved.

Over the last few months since Dave finished active treatment and we have entered the "watchful waiting" zone, I have come to the realization that I don't do well with things over which I have no control (okay, this is no surprise either so stop laughing Brian, Packer, Dee, Dinah, Danny, Sherrie, Donna, etc...). The news from Rosie about Heather's status probably gave me the final push to send this message out and ask for your collective input which I value so highly.I think my anxiety is rearing it's ugly head and "watchful waiting" has become more hellacious for me that active treatment was (pray Dave doesn't read this because I'm sure he will beg to differ) because, damn it, what's been done is done and we aren't doing anything right now and did what we did do the right thing?

The bottom line is that living with oral cancer (or any type for that matter) is a real, gritty, scary (okay, terrifying) experience that has tested my faith in destiny, justice, belief in positive outcomes, and on a practical level, trust in health care professionals of whom I am basline skeptical most of the time.

On the flip side, living with oral cancer has affirmed my faith in friends, love, Dave, and the value of slightly irreverently driving our own bus as a team. To be frank, I'm not sure what I'm asking of all of you but I am really interested to hear how you handle the fear factor and keep the daily struggle in perspective.I'm in that weird place where I want someone to look me straight in the eye and tell me, preferably, loudly and repeatedly, that this whole scene will turn out to make a great chapter in a self-discovery/relationship book and I'll look back on it and chuckle at how far Dave and I have come in out evolutionary processing. The real side of me says Darwin probably wasn't worried about having a scope shoved down his throat every month and being crazed by follow-up scans.

Okay, so short of chanting that the CAT scan machine is our friend (yes, someone did recommend this idea for my anxiety), I'm thinking there must be some constructive advice out there.
They say timing is everything-no surprise that we meet with our ENT tomorrow(who I do trust and can tell I am scared) to have Dave scoped, poked,prodded ,and to plan how I wait while remaining watchful but maybe just a tad more chilled out...

As always,

Kim

Kim I have to say you are one amazing person, when I read your posts and email I always wish I could be half as upbeat and half as articulate as you.
You always know the right thing to say, and I must say I haven't posted much because I am always afraid I will make someones fear worse, or put my foot in my mouth.
About the watch and wait way of life. I am okay the day after Dan sees his Dr. I sigh and think, great two more months cancer free, and then the day before his appt I start to freak out. I am not sure this will ever get any better. It has been 20 months since Dan's surgery and 18 since his radiation. I am always afraid to say anything like, he goes every three months starting in August because I am always afraid I will jinx us!....
I still try to plan for future events but never too far into the future....Dan gets morbid at times, he is missing his grandma's 85th birthday (she lives out of state) due to work and he says,
"I am sure they wanted to see me before I Die" I was like....where did that come from, you would think his thoughts would be seeing her before she dies, but nope, always thinking he is going to be a goner. He keeps thinking the statistics that were thrown at him. Dan functions great, works out rides bikes etc....I guess if this is his way of dealing with things I will let it be. I think he is afraid of thinking too many good thoughts for fear something bad will happen.
Thanks for your post Kim, always make me smile.
Hugs, Sherrie

Kim and Sherrie, I am always rather uncomfortable telling someone else what to do, so please just view this as something that works for me and might for you, too.

I know in my heart and in my mind and clear down to my toes that I am cured. Absolutely and with no doubts whatsoever. I feel so terrific, and will not allow it to be any other way. Appointments with the ENT and Rad docs are social. I look forward to visiting with them and the staff people I have come to know so well. They confirm that I am doing as well as I know I am, and that makes appointment days celebration days. (Another long-held belief is that any reason for a party is a good one.)

A word about fear. If one can banish it, life is better. Fear saps one's energy and takes over one's life. In most cases, it is a terrible waste of energy. I have a strong belief in self-fulfilling prophesies -- have seen negative ones come to pass all too often. My belief that I am well and will continue to be well is the flip side of that.

I may be completely wrong and may succumb to this awful disease in a short time. But by golly, until that happens, I am not going to waste one second of the life I have left worrying about it!

That said, I do everything I can to maintain good health, and will never consider missing an appointment for a check up.

Thus ends the coping philosophy of Joanna, the sometimes mad (grin)

Joanna has said it for me too, though I have a tougher time actually living her words. On a conscious level I am unaware of it, but a few weeks before my scans I am noticeably more irritable and short with others. Even my posts here get more curt. But it (the negative feelings) happens on a sub conscious level, because consciously, like Joanna, I know that I have beaten this thing

Glass half full / glass half empty / Oh hell the glass has water in it!!!!

Everyone is so articulate about their feelings that at times I wonder what world my head is in. Joanna & Brian write so well about the reality we all live with that I can't add anymore except to say, I CHOSE not to let it rule my life. Maybe "ignorance truly is bliss" but I refuse to acknowledge that this will kill me right now.

Do I get cranky before CT Scans and checkups, yes I do, I didn't even realize it at first. Can I change that, no I guess not, but it's not much different than a case of PMS and I lived through that. (poor Mike)

Remember Kim, change the things we can, accept the things we can't and know the difference. We've all had to let cancer make changes in our life, I would hate to aid it in making things tougher. I think it does enough by it self. Nothing you can say, do, or worry about is going to change that doctor appointment or CT Scan. So don't go there!!! As always, just my 2 cents.

By the way - glad you guys are back!!! Missed you.
Dinah

Compared to everyone else, I'm just a rookie with this, but I am almost to 1 year post treatment and it blows my mind. For about 6 months post-surgery I let the fear of recurrance rule my life, and then I realized that I needed to start living again.
I now cherish every day, and live each to the fullest. This has helped the time fly by, and really has helped me to overcome my fears. I don't dread the doctors anymore, and take every little thing that happens as a milestone. For instance, last week I got to stop taking my coumadin. Next week, I get to have my peg tube removed. My hubby and I take things like this and celebrate to the fullest. We have gotten back to planning our life together. (remember...I was diagnosed on our 6 month wedding anniversary....it's been a rough first year of marriage for us) We are talking about having kids, and I've really been pushing hard to finish my PhD.
I no longer worry about whether or not I'll be around for something in the future. I believe that no one is given any trial in life that they can not handle. This experience has been both one of the worst and one of the best....it really showed me how strong I can be. I learned who I truly was, and have embraced the new "survivor" that I have become. I wear my battle scars proudly, along with my cancer survivor pin and head and neck cancer ribbon.
There are some days when the fears rear their ugly head....especially when I hear stories of other patients that aren't fairing so well. I get survivor's guilt alot....and it hits me very hard, but then I pull myself out of it. I believe that I was meant to survive, and that I need to make the most out of whatever time I have left. If I live to 30 or to 95, all that matters to me is that I made the most of my time here.

This is a quote that I have found helpful during the past months: "If the essence of my being has caused a smile to have appeared upon your face, then in living.....I have made my mark." - Thomas L. Odem, Jr.

What a wonderful quotation, Jeanette!

To clarify about self-fulling prophesies. I do not mean to give the impression that I think I can fool Mother Nature. On another level, however, one can be so afraid of failing a test, that even with careful preparation, that person will fail. To believe in a positive outcome will not guarantee such outcome, but it will allow the believer to be happily free of stess and that old nemesis, fear. I am aware that there are some things that are out of my hands (which does not mean that I like it!) but I CAN choose to be happy, and I do. And I hope you all are too.
Joanna

Joanna,
Thank you. I hope John has your philosophy. It would make it so much better for me to handle this with him.
Meredith