Words

It was a conversation that was never meant to take place. An innocent phrase, spoken by a doctor I had never met before that ended up going somewhere neither of us had expected. A simple problem, made complicated by genetics, and headaches, and ICL (of course), leading to more complicated solutions, and then an easy back-and-forth.

An off-hand remark about some side-effect that the doctor didn't want me to suffer from "when I'm fifty" and my casual response, "Like I'll get to see fifty."

*dead silence*

"I...uh.... I wasn't aware that the prognosis was that bad.... um.... wait, how much of this conversation have you had with your doctors already?"

Shit. 

So, here's the deal. Every time I try to have this conversation with my top three doctors (ID, immunology, GP) I get the "hit by the bus" story. You know, I ask them if this is going to kill me. And they reply, Oh, they don't know, I could get hit by a bus next week. Which is like, the least informative thing anyone can possibly ever say. 

Now I've got to limp through an explanation (to someone who has no idea what ICL is) of what I do and don't understand about ICL, about my prognosis, about AIDS, and how ICL is not AIDS because I don't have HIV, but low CD4 counts are not awesome things, about how my care has changed in the last year, and the different conversations I've actually, actually had with people, all while the doctor is tearing up in front of me.

Then she turns white and drops the p-bomb, murmuring, "So, I guess we would consider this a palliative care decision then?"

Shit. Shit again. 

This was supposed to be a conversation about a boring specialist issue that was affecting my life, not the first time ever that end of life care decides to rear its head, and with a doctor who isn't one of my core doctors who I've never even met before. 

For the sake of some side effects I might suffer twenty years in the future. We're not even talking imminent death, here! 

See, docs? This is what happens when you use the bus story instead of having a numbers conversation with your life-threatening illness patients. 

In the end we decided to leave the conversation for a month so she could talk to my other doctors, and so I could talk to my other doctors, and so far it hasn't really gone anywhere yet, except that I've been put on more antibiotics and my CD4 is lower. 

And I've started reading PubMed studies and whipping out a calculator and grouping up study participants to match ICL patients that look clinically like me and seeing what their survival rates were so I can get some number answers so that I'll be better prepared the next time someone makes an off-the-cuff remark and I make a flippant one back, so that I can save us all a really long and painful conversation.

Words. Just words. Just stupid, stupid words.