I realized when I was finishing up radiation a few weeks back that I wasn't sure what came next. In the immediate moment I understand. I know that my Herceptin treatments continue every three weeks until October. But then what? And as importantly, what am I supposed to be doing along the way? What should I be thinking about, preparing for, noticing? What appointments have to get in the queue? I thought about this because I kind of remember that my surgeon said something back in October about a follow up six months after surgery. But six months came and went, and no one called. No one reminded me that I was supposed to do this. I just kind of remembered, "Shouldn't I be doing a follow up about now?"
On my last day with radiation, I met with my radiologist and asked if I was supposed to come back. Actually what I asked was, "Respectfully, who's in charge here--of my treatment, I mean? Who's my go-to person?" He laughed. I think he's gotten that sort of question before. I can't really remember what he said now but I do remember his candor in admitting it's an unclear path with no single point person. Then he added that I was free to call anytime if I had any questions at all. Thanks doc. You've been great.
All of these stops and turns. It's like the opposite of a dead end. I keep hitting more open roads with just enough signage to realize I'm not sure where I am. It's sinking in that there is no guide. No map. No cruise director. No concierge services. Just a series of hand-offs where I track the path as it's rolled out in front of me. Ok, go down this road. When you get there, tell them who you are. They're expecting you. Just remember to come back and see us next year. And feel free to call anytime if you have any questions at all. Thanks guys. You've been great.
I don't know where I got the idea that there'd be someone within this medical food chain to oversee my progress or more importantly, oversee me, my experience. But it doesn't work that way. Each doctor, nurse, technician cares. They care about me in the moment, my comfort, my state of mind, my symptoms. But each has their own mandate and agenda. They hold onto me as long as it takes to document me, follow up and pass me off. But there is no one source that says, Christina, you are here. This is what you should be thinking about and watching for as you go down this road. These are the tolls you will need to pay along the way. These are the people you can expect to meet. Here's my number and this is when and why you should call.
I'm not speaking from a place of pity or entitlement. I'm not angry. I don't expect too much. But it strikes me as broken and even dangerous to expect that a person who is living under extreme stress and intoxicated (to one degree or another) with the effects of cancer treatments could successfully manage the complexity of long term care. I write the information down. I get the schedules on the calendar, but I'll be damned if I can remember why.
Give a girl hand will you? I could do with a little more push than pull. Push that schedule on me. Don't make me pull it out of the conversation. Don't let me forget to show up. Push that support my way. Don't make me hunt down a flier on the wall of the hospital basement. Make sure I've heard all of the opportunities. Push long term preventative options on me. Make sure I'm good to go for at least a year in advance.
I feel like I made it through a brutal ocean storm riding in a tiny little raft. There's a sublime calm I'm experiencing now, but I'm still a little bit adrift. The sense of dis-ease is still here. Not only is there no one to really guide me but there's no one to offer up the possibility of an end. The best that I can expect is a series of diminishing returns--follow ups will halve indefinitely until my potential outlives me once and for all.
I thought as I crawled out of the hard part of treatment that my faculties would bounce back faster and that I would feel it all receding. But the reality is that I'm still deep inside of it and I'm still confused. Maybe it's post-traumatic stress or the drugs or that I don't like being out of control. But I'm scared I'm missing opportunities; forgetting information; or supposed to be doing something in particular.
Where's my personal assistant? Who said she could have the year off?
Big breath Christina. You're doing great.
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