Not a Model Patient

Face it, we all want to be liked. When it comes to having a serious illness, we want our doctors to really like us. Would it be so bad if our surgeon or oncologist had a little daydream about our tumor and how they were going to annihilate it? Nope, nada. Dream on, docs. And we would love it if our doctors remembered the specifics of our cases without having to be corrected during appointments. "No, I can't have the drug to induce menopause; I had my ovaries removed last year, remember?" But I digress.

I'm not a model patient. I don't pretend to be "glass half full" when I really feel like I'm dragging around a load of concrete. I want to be listened to with respect when I speak even if I pause longer than normal to retrieve a word from a treatment-impaired brain. I want a treatment plan tailored to me, to my specific cancer state and characteristics. I reserve the right to decline a recommended course of treatment and do not expect disparaging looks or comments from the medical professionals involved in my care. And while I'm up here on my high horse I would really, really appreciate a helping hand back down to Mama Earth.

You see, I spoke to my Agent of Doom tonight. He's actually Doom #2, since Doom #1 proved to be more condescending than I could tolerate. I had to let her go. The current Agent is in the same practice, or "Cancer Center," because there are simply no other options short of changing my medical group. (HMO Blues, let me tell you. I could switch to Stanford or UCSF but would then have to travel 15 miles+ just to see a primary care doc.) ANYWAY, the Agent of Doom was calling to discuss my request to see a gynecologic oncologist for regular GYN care. I had a specific one, out of network, in mind. Even without ovaries I still need GYN exams, and it makes sense to me, at least, to see a specialist.

We spent a bit of time while I provided reasons to justify why I needed to see a specialist. This was for the benefit of the HMO, apparently. Agent #2 assumed the role of "processing clerk" which made me wonder, Does he really think he has to mollify me? Toss me a bone? There's nothing like defending my position to tweak my Bawling Babe gene. Instead of shedding tears I confessed: I stopped Arimidex. Would that be a good reason to see the specialist?

Silence. I imagined him cursing Agent #1 for palming off a cancer patient with a suicide wish. When he spoke it was to ask why I stopped the drug. I mentioned my hands, the all-over-body pain, a sense of diminishing health. In Bawling Babe mode, all my words sound lame, my reasoning foolish and irrational. (Ooh, that was another reason: I couldn't think on Arimidex.) I seem unable to muster the strength to say how much thought went into the decision, and how I am trying to replace the estrogen-suppression action of the drug with changes in nutrition, supplements, exercise and acupuncture. He doesn't pursue it or tell me, as he has in previous conversations, how rare my side-effects are, and I am spared the need to disagree. I feel plenty stupid anyhow, and definitely Not a Model Patient. I can almost hear his voice, a year or two from now, holding me responsible for a recurrence.

After our lovely chat I sat on the bedroom floor, in the midst of my clear-the-office-and-prepare-to-write project, snagged Nikko the fluffy gray feline and let loose with the tears. We need the Agents to be on our sides, to listen to us. Somewhere in this effing universe there must be a scientific study to prove that doctors who disapprove of their patients inflict damage far beyond the disease they are treating.