Thursday, January 22, 2009

for swiss miss

As I lie on my back clothed in yet another paper gown, I stare at this man sitting on the stool next to me. I voice my feelings, for some reason, out loud to him: "You know, I actually WANT you to find something wrong... Isn't that strange?"

"No, not at all. You want it to be wrong, just not wrong wrong."

Exactly. I want an explanation, a reason, a diagnosis. I just don't want it to interfere with, you know, like, the rest of my life.

What I want him to answer for me is WHY, a day after my first Taxol chemotherapy infusion on January 5th, the tips of my fingers were so agonizingly painful that I could neither sleep nor pull up the happiness-inducing-flowery-over-the-knee socks sent to me by Cindy. You know the tingling in your fingers as they just begin to warm after the bitter cold? Or the momentary pain when one of your extremities has fallen asleep and is just beginning to awaken? It was like that, in all 10 of my phelanges, only it raged on nonstop for nearly 48 hours. Everyday activities were next to impossible: holding a pencil, turning a key, buttoning a blouse. Over the past two weeks it has subsided, and there now remains only a faint sensation, reminding me that I can't quite trust my finger tips the way I used to.

And so I was released from reporting to poison chair duty last Monday. It was, at that time, a huge relief. My oncologist sent me to another doctor, a neurologist, who ordered some tests to be performed by yet another doctor the next day. Their task is to find out if I have inherited CMT2 from my father, which may explain my reaction, and to generally assess the state of my nerves.

When I first enter the room, I am surprised by the tiny machine sitting along the wall. It's the size, shape, and color (baby poop beige) of a computer from the beginning of the computer age. It looks like a hand-me-down you would have found in a Boys and Girls Club 15 years ago. Four heavy-duty black knobs adorn the front. I realize that two weeks ago, my fingers would not have been able to turn them. Along the right hand side, assorted electrical cords in different colors are dangling like instruments of torture.

I put on the aformentioned gown, and sit, as comfortably as is humanly possible in a giant paper napkin, on the table.

And then the doc walks in. Jesus Christ! He fucking MATCHES his machine!

Short, balding, a combover complete with graying sideburns and a graying mustache. The blues of his striped oxford clash horrifically with the blues of his too-short whale tie. He reminds me of a man my mother might have dated in 1975 when I was eight. He is uncomfortable in his own body, uncomfortable with mine, but happy while squinting in front of his little machine and pinching the little electrical wires between his fingers.

I wonder, as he shocks the sensory and motor nerves of my arm and leg into spasms with little bolts of electricity, if he enjoys his job. Wonder what kind of pervert becomes a doctor who enjoys shocking people with ancient technology? I'm willing to bet he played Operation as a boy and got some sort of perverse pleasure when his tweezers didn't quite make it out safely. ZAP! He probably took apart the family's AM radio, just to look at the circuitry.

To take my mind off the fact that (ZAP!) this anachronistic man is attaching electrodes to my extremities and making my body convulse in a way that is completely out of my control, I stare at the ceiling. My mind floats back to all the (ZAP!) other machines (ZAP!) I have encountered over the past six months: the new digital mammogram, the ultrasound that guided the needle to the tumor, the MRI with its strangely melodic hums and whirs, Lynn's radiation laser monster, the beep-beep of the IV when the chemo was all dripped out. Then a small tear forms and (ZAP!) threatens to escape, because I am imagining the rest (ZAP!) of my life filled with the pricks of needles and the noises of machines.

And so, to take my mind off my uncertain future, I begin to count the little squares of the heater vent directly above my head. (I used to count lights and lines and pews and people in church as a girl to keep me occupied during the service; I think counting must be my own personal religious practice). There is nothing else in the room on which to fix my gaze. No pretty tulips, no inspirational messages, not even any comforting diplomas. The walls and ceiling are bare, the same color as the little bald man's electricity machine.

Eighteen squares across. That was easy. (ZAP!) The length, however, proves to be a bit more difficult, because me eyes are blurry from the tears, which are as automatic and as uncontrollable as my fingers and toes are at the moment. I begin counting, but have to blink, and lose my place in the cold gray metal, which I think must be as old as the doctor, as old as his machine, as old as I feel. I start over again. Blink. (ZAP!) Lose my place. Begin again. Keep my place this time. Keep counting. 42! My age. I don't believe it, so I start over. This time I am successful on the first try, having mastered the technique of holding my place while blinking through tears. It's a skill I realize would come in handy in so many other areas of my life. 42 again. Yes. Something about that just makes it all ok all of a sudden.

In the end, he finds nothing wrong. But, as he reminds me, that doesn't necessarily mean there's nothing wrong. Damn stupid inclusive fucking test bullshit! He explains in metaphors (all good docs do): "It's like if you have a water pipe, and it's only slightly clogged, the water still runs through it. We're testing the water flow, not looking inside the pipes."

So I still have my nerves, at least 90% of them anyway. They still sense and feel and conduct and react. But the Taxol did something to me that day. Something unexplainable. Something excruciating.

After I was dressed, the 1970's doctor with the 1970's machine handed me a copy of my report and explained that, from his findings anyway, he saw no reason to discontinue the Taxol. In short, there was nothing "wrong wrong". I think I am glad about this. Don't get me wrong, being 100% finished would have been nice. But in so many more ways, having to quit now would be, not just wrong, but "wrong wrong". I CHOSE to do this. I want to finish it. I want to be able to live my life, after cancer, knowing that I did everything within my power to make it leave me the fuck alone. I have finally learned, after surviving the hospital and reading this book, that ten more weeks of my life filled with chemo is not something I can't handle.

I've wanted to quit before. After three treatments, at one-fourth (a million years ago) I sobbed inconsolably for hours one night, wailing to my husband that I couldn't do it, this chemo thing. Now that I'm on the other other side of one-half, with the end in sight and 5/12 remaining, and they're telling me I might be done, I find myself, ironically but understandably, wanting it MORE!

I don't know what my oncologist, the dear Dr. Hoyer, into whose hands I have placed so much faith, will say when I see him a week from today. Whether or not he will want to "re-challenge" me with the Taxol or not. I have a feeling he will, as he has done from the beginning, lay all the facts on the table and let me decide. If he does...... bring it on, I say. Bring it fucking ON!

PS. Funny thing is, in order to write this post, I also went, in the words of Marc, "back to analog form". My beloved MacBook was in the process of being repaired, and I was forced to put pen to paper. While writing the above words, I was sitting on a patio on a nearly 70-degree January day, sipping Cuban coffee, stripped down to a tanktop and exposing my bald head to the glorious sunshine. Totally worth it. Sometimes you have to go backwards, in order to go forwards.


Anonymous said...

I logged on this morning specifically to look for a post from you. I'm so sorry about that test - and EMG? - I have heard other horror stories about it and wonder why they don't put effort into developing less painful medical tests. I am glald there doesn't seem to be anything dangerously wrong, but still. And I'm sorry. So, back to you countdown. More than halfway done, and after the next, 2/3 done. Still holding you in my heart.

John said...

Hang in there girl. Just think how easy everything else is going to be once you make it over this mountain! Everyone around you will be wimps!

Nancy said...

Well said. You should send it to Dr. Gadget; it would do him good.

All of my children are brilliant writers. How did I get so lucky?

Pete and Jill said...

Hey Sue,
Just wait until your NEXT doctor's appointment! We have contacted our dear pal George Clooney, who has agreed to give you some extra special bedside manner while Dr. Nerdo is away for a few weeks at Camp Combover! Things are going to improve very rapidly! Hugs, Pete and Jill

suesun said...

citizen- I just added a link to the tests... yes, an EMG, and then some.

John- even you!

Nancy- How did WE get so lucky?

Pete and Jill - LOL!! Mmmm...can't wait!

The Burkles said...

I think Dr. Nerdo will be a mosquito in another life drawn to the blue neon at dusk...ZAP

Maida said...

Good Lord. Why isn't a passing grade "Bedside Manner" required for all medical professionals???

I'm sorry I didn't have time to say more than 'Hi' when I picked up the Wolfe boys on Tuesday.

I am so humbled by your strength and grace - yes, grace - through this experience. You are amazing.

Klayton said...

As I tell everyone: diagnoses are for TV doctors. As an adult I've visited doctors perhaps a dozen times, and a dozen times I've walked away without a diagnosis. I think I'll start leeching myself when I get sick....

Beth said...

Oh my dear Sue,
Reading your reflections on this horrendous experience, I have to wonder how you can be so circumspect in the face of these difficulties. May I also find the space to reflect. You give us strength and courage and I am blessed to know you. Thank you so much for sharing your gifts with us. Beth