Less Than Entirely Clear

Thursday was my latest consult with the oncologist. It was a, shall we say, fuzzy, conversation. 

It wasn't that I didn't understand the words he was saying. It was more than that when you put all the words together, and compared them to each other (and to a lot of his earlier words), it became very hard to figure out what to do with it all.

A few examples...

So my tumor marker results were not yet in, but the oncologist was very pleased that the marker levels appeared to be holding stable. Fair enough. Stable's good, but they're holding stable at a level that a year ago had him freaking out. The last few tests have had values north of fifty, and while that's not high for a lot of cancer patients, it is -- or at least was -- for me. 

Then there's the Lonsurf. We're all pleased with the minimal side effects. Pretty much everyone who sees me tells me I look better than I have in years, and yet there's the minor issue that it's killing my white blood count. So much so, in fact, that the oncologist wants me to wait another week before starting back up to give my white blood cells the chance to come back a bit.

This part of the conversation also started to seem a little weird when we moved on to the conversation about RCW 70.245. The oncologist was supportive of my intentions, but the question of when would be the right time to start the process got a little odd. As best as I can recall, for him the moment to pull the trigger (sorry, bad metaphor) is when the Lonsurf stops working, which could be as short as a month or two from now. Really? So why are we all so excited about how well it's working? I mean, sure, every moment counts, but lets not go overboard.

Furthermore, there's the now repeatedly made statement that I "don't have much cancer." Fair enough, compared with many folks I've met, that's probably true. But I have to admit that when I hear I "don't have much cancer" my brain immediately goes to "well then why aren't we trying to get rid of it?" But whatever. Where this all gets odd is that based on the conversation we had it doesn't really seem like my oncologist expects the cancer to kill me. Rather, he expects the cancer to drop me into a state where something else can kill me. The immediate examples he came up with were my proctitis...

...Really? You really think I'm going to die from, excuse the language, an infection of the ass? I find that to be just completely unacceptable, if actually pretty consistent with the way my luck goes these days...

...or pneumonia. In short, some sort of secondary infection. Which raises the question: if the Lonsurf doesn't do much, and doesn't do it for very long, but completely trashes you white blood cells, and if I don't have much cancer, why am I still taking the Lonsurf? Shouldn't we just go with the approach that will let my not very much cancer slowly expand while not putting my body into a state where I could be killed by an infection?

I don't understand medicine sometimes.

Anyway, overall the oncologist seemed pretty happy with where things are at, even if he was pretty clearly signalling that I should probably come to grips with the fact that I am not going to find out who wins the Iron Throne. 

After seeing the oncologist, I did have a pretty funny conversation with one of the nurses. We were talking about medical directives and she told this story about how, when she got started in the business, she figured that if she was going to be directing patients to get all these docs in place that she ought to have some of her own so that should could honestly answer "yes" if a patient asked her if she had them. 

She was trying to figure out who to empower to make decisions on her behalf if she was incapacitated so she decided to give all the usual suspects (mom, dad, sister, etc.) a test. Four "what would you do if..." scenarios to evaluate the decisions they'd make. She said they all failed. 

So she picked one of her friends to be her authorized representative. 

Maybe it's just me, but I found that amusing.