Thursday, May 21, 2009

Daniel and Bob - A Story of Two Tumors and An Idiot


One of the big headlines in the news right now is the story of the 13-year old Daniel Hauser who has Hodgkins disease and is currently on the run with his idiot--I mean loving--mother to avoid a court ordered regimen of chemotherapy. Seems that the family, Catholic but somehow hooked into some Native American beliefs, chose to opt for a more holistic approach of ionized water, special diet, sweat lodges, magical fairy dust or whatever. Only problem is, the tumor (which shrank dramatically with the first and only dose of chemo the boy received) is now back to its original size and growing like a friggin' weed.

Now I do not want to open a can of worms regarding peoples' beliefs or their right to refuse the treatments recommended by the international medical community, whom--I'm just taking a wild guess here--might know just a little more about physiology and oncology than your average purchaser of "Malignancy B-Gone" pills or the zillion and one Internet authors (heh) who know someone who knows someone who recovered from cancer via pure thoughts, a diet of flax and a strict chanting schedule.

I know, believe me I know, that chemotherapy is toxic and nasty. My straight and u
ntamed hair is now curly and untamed. My fingernails are still so messed up that they break off if I just look at them in a funny way. If chemo does that to hair and fingernails even months after the process, who can guess what else is going on that I don't know about? I won't quibble too much about a fully informed adult who makes the decision to go totally holistic. To each their own, I guess. BUT Daniel is thirteen years old. He is not old enough to vote, or drive, or enlist in the military. He's at an age where, when the rubber meets the road, he'll still believe what Mommy tells him and Mommy is telling him that the chemo is more evil than the cancer itself.

Is she on crack?

Here's where I'm coming from:

I'm still alive.

Without the chemo, I would not be alive. No question. No debate.

Here's Exhibit A: This is Bob The Tumor. (Also known as Jar-Jar in certain circles.) This is a CT scan cross section of yours truly.




At the bottom of the picture, you can see the circular shape of my spinal cord and my two shoulders emerging left and right. The top of the picture is the front of me. You can even see the ribs wrapped around my inner bits. Hello, ribs! Now, if you look at the right side, you can see
a nice large black area. This is a lung. It's a little occluded, but comparatively speaking, it's just chock full of oxygen. On the left side of my body though, where there really ought to be another space full of the oxygenated goodness of my other lung, you've got ... Bob. (By the way, the white circle in dead center is [iirc] a chamber of my heart--which proves that I have one, so the debate can stop now.) The yellow line is the official measure of Bob's width. 167mm. That's 16.7 centimeters. That's freakin' enormous, okay?

Yes, when I saw that sucker, well...you can insert the expletive of your choice. I think I went through just about all of them. I think I even made a few up. I needed a brush and dustpan to scrape my jaw off the floor.

Mind you, this CT scan was taken on August 23rd, when I was still (just barely) capable of lying down for brief periods. It was another week before I was hospitalized and biopsied. At that point, I could not lie down at all
without being completely unable to breathe because of the pressure caused by Bob's expansion. In fact, the nurses posted a sign over my bed promising the immediate and painful execution of any well-meaning moron who attempted to make me more recumbent by playing with the bed controls. So, at the time my first chemo treatment happened, Bob would have been even bigger than the picture indicates.

First chemo was on August 31st. By September 5th, less than a week later, I no longer needed to stay in an upright position or risk respiratory failure. I could breathe again. I didn't need to be on oxygen any more. (For anyone who hasn't been on oxygen, you get boogers like friggin' stalagmites!) Certainly the worse for wear, I was still fit enough and stable enough to be released from the hospital.

That's one week between certain death and a new lease on life. One chemo treatment. One. Why, I ask you, by all that's holy, would I have refused to take that second dose of chemo? Or the rest of them? Yes, I was sick, yes I was tired, yes it was a winter I'd rather not repeat. I sure came up hard against the wall and wanted to be able to quit. But when you get such dramatic results after the first dose, I would think that anyone unwilling to overlook the mouth sores and nausea in favor of breathing has just got to be a few fries and a plastic Power Ranger short of a Happy Meal, ya know?

Really, can I see a show of hands of people who can look at Bob in August and have any belief that I would be alive today without the chemo? Anyone? No? That's what I thought.

By all reports, young Daniel had an equally positive effect on his tumor from his one and only dose of chemotherapy. By and large, Hodgkins Disease is even a little more treatable than non-Hodgkins. But I bet the drugs made him feel sick. And I see he lost his hair. That's really a shame. It's awful for a kid to have cancer. I don't say that lightly. The blessing of my having had cancer is that it was me and not one of my kids.

Right or wrong, Daniel's doting parents have had their shot with the super-speshul water and the strict diet and Daniel's tumor is now again as large as it was in the first place! And so, from where I sit, from my very specialized and I'd like to think well earned point of view, if Daniel's condition worsens and he does not survive, his parents will be guilty of manslaughter. Maybe even murder.

If that happens, and I sure hope it doesn't, it would be best for me to never meet Daniel's mom. I'd punch her in the face.

I could do that, you know, because I'm still alive.

6 comments:

mvesper said...

I don't know you....but I love you.

Thank you for your article. I was just looking up info about my brothers cancer and I found your inspiring article.

Sue said...

Thank you, mvesper! I love you right back. Whoever you are. :) All the best to you and your brother. I mean that.

Writing Unicorn said...

Your words make me cry with a smile. I'm so proud of you for not giving up, and giving hope to others. Who knows which one of us will need support and friendship next? I'm proud to say you are my friend..and one heluva writer...

Emma said...

Fuck. Bob certainly had a tremendous, uh, girth. That's mind-boggling to look at.

Glad to hear that you're still on the mend. :)

Epona's Chosen said...

You know, Sue, I just realized... Evil Bob.

I guess you get tired of me posting all sorts of sappy stuff (Oh wait, I never do that do I?)...

That's the first I've seen your scan, and I can honestly say that some days I still kick myself for not realizing what was going on. This is one of those days. Amazing to think you were walking, talking, and driving with that big of a telemarketer inside your chest. As for the Daniel thing, it makes my stomach clench, because of course Cody's the same age. How can anyone let a religious belief step between their children and proper care? I'll never understand.

Anonymous said...

I'm also saddened that his parents are deciding this for him. I'm 21 years old and undergoing chemo right now for NHL. Yes, I hate it. Yes, I get sick. And yes, I have been looking at alternatives to such harsh treatments, but all in all, its my choice to choose chemo and i'm still doing it. No matter how sick it gets me, my lymph nodes have shrunk and are continuing to shrink. So as long as I am doing ok and seeing progress, i'll put myself through such agony sometimes. If it means I can take another breath.

Thank you for this article.