Monday, February 28, 2011

A night for valium

I haven't written much lately about my own cancer. I guess I'm trying to find a little niche in the blog-o-sphere and am hoping to write more about science-related and cycling-related topics. But sometime, I just need to vent:

There's this little spot on my neck, pretty high up...basically over my larynx, where there is a palpable non-tender, oblong nodule, which is not freely movable. Basically, a lump right on top of my larynx, aka voice box. My doctors know about it and the last 3 neck ultrasounds I've had, they spend a bunch of time taking dimensions. Last time I asked the radiologist if that nodule definitely represented metastatic disease, and they answered yes, but that it has been 'stable' nothing to worry about.

That's well and good, except for the fact that it is on top of my larynx. If any one cell in that lump of over 10^10 cells (10^9 in the least number of cells present in a clinically palpable or detectable tumor...and this is bigger than that, so probably a log-scale difference) acquires the ability to overcome senescence and express genes required for invasion of soft-tissue, I'd basically loose my larnyx (to surgery).

Today I was listening to NPR and heard a story about a PhD student from Germany who invented a computer program that assimilates data gathered from cutaneous electrodes placed on the face of someone who is lip-talking...moving their face like they were talking without actually using their voice; and the computer is about 90% accurate at producing a reasonably well sounding voice that speaks the words that the person with the electrodes stuck to their face is mouthing. Crazy. I wonder if I could ride a bike with one of those things?

Anyway, scary stuff. As I wrote about last fall, I do have some pain and stiffness in my neck but other than that, don't have any bone pain or breathing problems. Therefore, my psyche tends to gravitate towards my neck and treak things...making me not trust my body.

When I was a little kid, the one recurring nightmare I had was me fighting in some kind of ancient japanese samari battle...swords, spears, crazy looking body armor, the whole bit. The dream always ended with someone grabbing me and from behind, without me ever seeing who it was or being able to fight back, taking a sword, and slowly slitting my neck. Then I'd wake up.

Man, it has been awhile since I've written this way. Everything I've typed or written lately has been academic. I wish I could do it more often, but honestly I don't really know what to do with this whole blog thing anymore. I'm a but disillusioned with anything related to cancer support groups or advocacy things...and I try pretty hard to live my life without thinking about my own situation. But every once in awhile, stories like the one I heard today on NPR come on, and I freak out. Let's just say that I didn't get much work done today. Instead, I cooked a bunch of food, went to the gym and stretched, washed 4 loads of laundry, and cleaned my bike. Then I drank a bunch of wine, had dinner, and am getting ready to pop some valium before bed. What else can I do?


3873 Geraldine Ave Saint Ann, MO 63074 said...

Keep your positive outlook; you are strong in so many ways but each of them have a common root in the rock solid psyche you personify. It is easy for your mind to make or break the best of you. Ignorance is most certainly not bliss, however, intellect can drive a viscous cycle beyond our own concept of reality. Keep your head strong, and your body will follow suit.

Ariel Miller said...

Hey sweetie. My spiritual counselor is helping me understand the need to just allow what I'm feeling, rather than be happy mom and wife all the time. I stop, put my hand on my heart, take a deep breath in through my nose and let it out through my mouth.

I am in no way comparing our difficulties, but am the queen of stuffing it down, then freaking out. Your brother can attest to that. I'm trying to feel things, as they come up.

Saturday, I sat in bed, watched movies and cried most of the day. Just gut wrenching sobs. Sometimes living is so messy, you just have to let it all the fuck out.

I love reading your vents. Vent away.

I was thinking of you today. Hope we get to see you in the not too distant future. We love you dearly.

Great big kiss and hug.


Magda said...

You live your life in the best way possible: taking care of your family, your body and your mind. It is living a simple life, with as little stress as possible, that has been the most healthy for your body. So, go ahead, skip work. Do laundry, read, and drink wine. It is all worth it in the end.

Lucas Miller said...

Yes, vent, Dan!

First, I think that you truly NEED an outlet for what is an excruciating, emotionally-complicated situation. Shouting it into the void of the internet seems like it would be a way to "let it fly" without directing it at someone you love (even though we're happy to be that for you and, indeed, your blog is no "void").

Next, if you want your blog to speak to others battling cancer, the human side is probably as important as the scientific side; maybe more so.

From what I can gather, it seems the cancer resources out there are heavy on the emotional & motivational perspectives and not as well informed from the science perspective. Your medical/research background and ability to communicate in scientific terms are much-needed but sharing your rage and fear are important, too.

We love you, Dan, and so wish we could do more. I hope we can arrange some time together soon.

ProPam said...

Thinking of you guys.

Casey Ryback said...

Prince Valium is a good man.

Andy said...

Been thinking about you. Though I haven’t heard it in a while I can't imagine if you lost your voice. I do like hearing it here. I've learned more about cancer here (and cycling) than I have anywhere else. You're inspiring, though I know that isn't your objective.
I am at the moment floating in the big blue wet thing. It's nice to read hear your voice out here in the blue void.

Joyce said...

Hey Dan. Thanks for venting. God knows what I would do in your situation and I admire your strength and grace is dealing with such an awful and unfair situation.

Love you.