Archive for January, 2009

do-it-yourself chemo

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , on January 28, 2009 by lawler

I met with two doctors yesterday in Indianapolis. Now that I am back in Madison, it occurs to me that each of them said at least one memorable thing — one of them was funny (see the header), and the other was a bit depressing (though not entirely surprising).

First, I met with Dr. Einhorn. The mere mention of his name — according to Dawn, anyway — causes Dr. Arbaje’s eyes to glaze over with admiration. He is the czar of testicular cancer, one might argue. And today, in explaining his reasoning for recommending I endure more chemo post-surgery (oral VP-16) said, “it’s like do-it-yourself chemo.”

Dr. Einhorn also said more important things like 20% of IU’s testicular cancer patients have a recurrence after undergoing through high dose chemo. When they relapse, it’s “very hard to cure.” They have been administering VP-16 post- high dose chemo since 1995, and have found that this reduces the rate of recurrence by about 5%. As I drove the six hours home yesterday, I thought a lot about these numbers, and tried to determine if they were indeed encouraging. 8 out of 10 men do not have recurrence, I thought. But, two do. What’s separates the 8 lucky men from the 2 unlucky ones? Holy shit, I thought, 20%?!? That’s 20 out of every 100 men. What separates the 80 lucky men from the 20 unlucky ones? Okay, so the VP-16 is probably a good idea. That makes for 15 unlucky men, and I don’t plan on being one of those.

Whew, and that was the conversation that I found humorous.

Later, I met with Dr. [name withheld], the surgeon who will perform the RPLND on me next week (anyone hear my knees knocking together?). Once we got over his initial refusal to let me record our meeting (yes, that’s why his name has been withheld), things progressed smoothly, and he was very helpful, informative, and kind. I gave the doctor my word that the recording would not end up on the Internet (as he said happened once to his dismay), but as I am writing I worry that he meant he didn’t want any of the conversation on the Internet. Therefore I have withheld his name and have removed any mention of him in earlier posts. I do not want to break my word, or upset my surgeon.

The bad news here? Well, the worst potential side effect…

Okay, wait. Perhaps a disclaimer is in order: if you don’t want to read about extremely personal stuff that has to do with my sexual life, skip to “OKAY, IT’S SAFE (I THINK).”

…where was I? Oh yes, the worst potential side effect is that I may lose the ability to ejaculate. Too much? I warned you. The reason for this is relatively simple, but first a brief lesson in related anatomy:

This the average male anatomy

The average male anatomy

What isn’t shown in the diagram above are the bundles of nerves that run parallel to the Vena Cava and the abdominal aorta. These nerves can be damaged during the procedure, and in some cases are deliberately removed. This can result in an inability to ejaculate, though it does not affect erection or the actual orgasm/climax.

All of this is disappointing, and frankly a bit creepy if it happens. Fortunately, Dr. [name withheld] did not think this would occur in my case. He said that some of the nerves will be removed, but not all of them (or something like that), and I should retain my…ejaculatibility. That’s my word, by the way, not his.

But what he said that was so memorable was his own response to telling me that I may not be able to ejaculate in the future:

OKAY, IT’S SAFE (I THINK)

he said that after everything I’d been through it was very likely that I was no longer fertile. He followed this by asking, “do you have children?” I said no, and for a moment he was disappointed. But when I followed by saying, “but I did bank sperm before I had any chemo,” he nodded his head and said, “that’s good, good for you, that’s good.”

Now students, if you would direct your attention to the diagram above again. The surgeon will be removing all of my abdominal lymph nodes on the right side of my abdomen, which is where my tumor is — just to the left of where the aorta starts to fade away on the diagram. This will leave intact all of the lymph nodes on the left side of my abdomen, which they tell me leaves plenty to do the lymph node work for that region of my body. If they were removing all of the abdominal lymph nodes, it is my understanding that that would be a different situation.

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the big stuff

Posted in cancer, Cancer Life, testicular cancer with tags , , , on January 14, 2009 by lawler
Mike atop a pyramid at Teotihuacan. Bearded and determined.

Mike atop the Pyramid of the Moon at Teotihuacan. Bearded and determined.

The picture is about eight and a half years old. It was one of two or three photos taken of me during a three month long trek around Mexico. I remember this day fairly well. One of central Mexico’s notorious thunderstorms began when I made it to the top of this pyramid at Teotihuacan, and I found a couple of fellow travelers willing to snap a picture of me before heading back down and out of the rain.

I found the negative for this shot the other day during a phase of rummaging through old pictures and snapping digital photos of the ones I don’t ever want to lose. There was no print, so I had one made.

The reason it’s here on The C Word is because it is rare, identifiable evidence of something that I need to remember these days. It is up on the wall in front of my desk now, reminding me that I have an iron clad will, and I can get done what I set out to do. Whether its surviving a solo backpacking trip through Mexico, launching a new theater collective during the worst economic downturn since the Depression, or facing up to the medical realities of testicular cancer. (Another stubborn success would be not starving after leaving a perfectly well paying and secure job to drive a taxi cab for three years so that I could live a life more conducive to writing — something my dad was dumfounded by).

This is the big stuff in life. Remembering how I’ve done it in the past — or simply that I have done it at all (sometimes in the face of poor odds and lots of advice to the contrary).

Of course it’s nice to see myself with that much hair too — I’ve already told Dawn that I’m growing a beard when I come through all of this chemo. Maybe not such a full beard, though.

kindness

Posted in cancer, Cancer Life with tags , , on January 10, 2009 by lawler

I don’t usually write posts like this. I admit, as a writer, as an artist, as a human, I  can tend toward sentamentalism more than I’d like to — but I try to avoid it, because it doesn’t always help in reaching down toward the truth as I feel I am usually trying to do in my life.

And sharing poems on the web can feel like the most banal, uninspired, and downright shallow thing to do when trying to express oneself (unless you’ve written a damn good poem yourself). So, I don’t do it. Until today.

Because today our friend Stephanie gave me a poem. I’ve reprinted it here because it’s the kind of poetry I wish there was more of — clear, honest, and still lyrical. Undoubtedly, this poem is  all over the Internet. But maybe this time the popular masses have found something that really is good and true and full of wisdom. You be the judge.

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Kindness

by Naomi Shihab Nye

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken will stare out the window forever.
Before you learn the tender gravity of kindness, you must travel where the
Indian in a white poncho lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans and the simple breath that kept
him alive.
Before you know kindness as the deepest thing inside, you must know sorrow
as the other deepest thing.  You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day
to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

read this

Posted in cancer on January 7, 2009 by lawler
"More than 140 million Americans will get cancer at some point in their lives. Find the disease early and survival rates are high. Catch it late and it's much more likely to be fatal." -- Wired

"More than 140 million Americans will get cancer at some point in their lives. Find the disease early and survival rates are high. Catch it late and it's much more likely to be fatal." -- Wired

Confused? Check it out:

Thomas Goetz writes in Wired magazine’s current cover story:

“Much of the meager increase in cancer survival rates over the past 30 years can be attributed not to new chemotherapies or treatments but to early detection. Deaths from skin cancer, which is the most obvious to diagnose and treat, have fallen 10 percent. Since the Pap smear—a simple swab of the cervix for precancerous and cancerous cells—became part of routine care in the US in the 1950s, cancer incidence and mortality rates due to cervical cancer have fallen by 67 percent. Five-year survival rates for breast cancer have likewise improved as mammography and MRI screening have increased. There are tests for these diseases not because they are biologically different from other cancers but because they occur in accessible parts of the body. It’s neither difficult nor prohibitively expensive nor dangerous to swab a cervix or perform a mammogram. Other areas of the body, though—the lungs, the pancreas—are less accessible and harder to monitor. Consequently, their malignancies are far more deadly.

“Despite this proven model, early detection is an afterthought in cancer research. The pharmaceutical industry spends nearly $8 billion annually on cancer research, according to the International Union Against Cancer, most of it steered toward drug development and late-stage treatments. The major cancer foundations spend lavishly on cure-based research: The Susan G. Komen Breast Cancer Foundation spent $180 million on cures in 2007; the Michael Millken Prostate Cancer Foundation spends about $14 million annually pursuing a cure for prostate cancer; the National Cancer Institute spent just 8 percent of its 2007 budget, less than $400 million, on detection and diagnosis research.

What’s wrong with this picture?

If you missed the first link, here it is again. I recommend reading the entire piece.

today is Wednesday

Posted in cancer, Cancer Life, testicular cancer with tags , , , , on January 7, 2009 by lawler

Okay, as of today we know this: I am scheduled to have surgery to remove the remainder of the tumor in my abdomen on February 2 in Indianapolis. Dr. [name withheld] will preside over the not-to-be-missed proceedings. They tell us that I will be in the hospital three to five days. I’m hoping to be out in two.

Before that I am meeting with Dr. Einhorn for post-high dose chemo evaluation and will also have follow-up blood work and CT scan.

As you have come to rely on, I will keep you posted.

What’s the opposite of certainty?

Posted in cancer, Cancer Life, testicular cancer with tags , , , , , , , on January 3, 2009 by lawler

I mean, besides uncertainty. Doubt, incertitude, doubtfulness, dubiousness — or, my personal favorite, dubiety.

This morning, before seeing our friends from Seattle Aurelia and Tim off to the airport after an extended holiday visit, we sat in the coffee shop (by now, you should know which coffee shop) with the four of us and Aurelia’s brother Léo. As Dawn and Aurelia played their favorite card game (Spite & Malice), Léo read a book called Neural Prosthesis: Replacing motor function after disease or disability, and Tim and I waded through the NY Times I noticed an article in the Business section with this headline: Coping Skills and Horrible Imaginings. Naturally it caught my eye.

In the piece, Alina Tugend writes —

Nov. 17 is officially “Coping With Uncertainty Day.” …I really think we need more than a day. In fact, 2008 could be the “Coping With Uncertainty Year.”

And I thought, you got that straight. Or, more to my taste, “Coping With Dubiety Year.”

But then, that’s not quite right either — especially because the dubiety continues, uninterested in the arbitrary numbers we assign our tomorrows. At the moment, the most uncertainty seems to be regarding my continuing treatment. At last word, the surgeon in Indiana who is to remove the remainder of my tumor is very busy and may not be able to operate on me until mid-February. As a result, we have lots of unanswered questions for my doctor down there, Dr. Einhorn:

Is it okay to wait that long to remove the tumor?

Would the resulting delay in my oral chemo regimen affect its efficacy?

And then there are a few questions that Dawn and I have to ask ourselves (mostly centering on this thought):

Should I plan on going back to work before the surgery — it seemed so perfect a plan to have the surgery this month, recover, and then go back to work while on the oral chemo.

When we have answers, I will be sure to let you know. It will be a relief to release some of the incertitude, doubtfulness, and dubiousness from life.

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There is a first time for everything, and yesterday it was for Mike ice skating. I figure, if I’m going to live in a part of the world that freezes over for months at a time, I might as well take advantage of it and do things we just don’t do where I grew up. Dawn and I are planning on buying some ice skates of our own now, so that I can get better (much better, I hope) at it. Here are some photos from yesterday’s adventure…

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