Thursday, October 20, 2011

I am not a plot element

Before I begin, let me say that yes, I'm going somewhere with this, and no, I haven't seen 50/50 but I hear it's pretty good and based on the director's personal experience with cancer.

The media has done a tremendous disservice to cancer patients.  I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah.  I specifically mean entertainment.

In movies, there are four kinds of cancer patients.

1) Part of the background in hospitals, their only function to fill a bed.  Maybe that bed will be empty later if the director feels like being subtle and poignant.

2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.

3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.

4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."

Needless to say, number 4 there strikes a particular chord with me.  Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything.  There's a pun in there but I'm not in the mood.  Haven't had my coffee.  ...Dammit.

Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity.  Other than that they're all delusions and screaming in pain.  And let's be clear, there are people who end up like that.  This is a disease that consumes the brain.  But it typically doesn't happen nearly so fast.

Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death.  From what I've seen and heard, most brain cancers are discovered by accident.  Think about that for a moment.  That means that the cancer had so little impact that the patient didn't even realize they were sick.  And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming.  But I picked myself up again.  In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later.  So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms.  Or I might not.  I'm not doing that right now.  Right now, I'm living on my own, I'm working full time, and I'm continuing my life.

A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy.  As I mentioned before, I was very reluctant to go with chemo.  That's because I was terrified of it, as are most people.  In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer.  They lose all their hair, all their color, and all their weight until they look like little more than a skeleton.  They lack the strength to stand, or speak, or even hold up their head.  They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.

And don't get me wrong, there are people who must endure exactly that.  I've come across a few, in the same hospital, seeing the same doctors.  My heart truly goes out to those people, and I can't imagine trying to live like that.  I can't imagine that they can.  However, that's only the most extreme form of chemotherapy.  There are much lower doses.  Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy.  More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects.  I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran.  I didn't get the slightest bit nauseous.  The worst I suffered from that was a little stomach pain now and then.  I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment. 

That's not to say that taking chemotherapy - even a low dose - isn't scary.  The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling.  The bottles came in a bag marked with a huge biohazard symbol.  The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin.  And I had to swallow them.

There are also plenty of risks and restrictions while taking chemotherapy.  It attacks all replicating cells in the body, including healthy ones.  Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor.  Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia.  It saturates the body.  I could smell it in my sweat.  Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo.  It isn't always as bad as it is in movies, but make no mistake.  It is poison.  Its purpose is to attack the body.  I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way.  If only we could find it.

Of course, I wasn't the only person mislead about chemotherapy.  My image was a common one.  So common, in fact, that most people seem to equate cancer with severe chemotherapy.  People kept telling me how good my color was, and how healthy I seemed.  They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason).  They think that since I look healthy, I must be healthy.

Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer.  I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.

So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.

If only I could say the same about the radiation.

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