March 20, 2010

The medico-industrial complex

I'm having a frog-all kind of day today, the result of having major flashbacks to Fred's illness for the last two days. Not so much to his illness as to the through-the-looking-glass feeling during treatment for a serious condition.

You know how infuriating it is to learn your husband had an affair and everybody knew but you? Well, I've got that "everybody knows but me" thing going on. With every single medical person with whom I've had the slightest dealings, including the people who give me directions in a strange hospital, I've had a lovely, cordial, informed relationship.  The place of breakdown is when it comes to getting information about my own personal self.

My family doctor thought the mammogram folks let me know about the suspicious duct, possibly because the mammogram place tells patients they're going to send them a letter, and then never does.  As a result, when I all oblivious called to get the results of my thyroid test, my doctor's first words were "Oh, you're calling about the suspicious mammogram."

She referred me to a surgical oncologist, who assumed my family doctor and/or the mammogram/ultrasound folks had told me what was going on in terms of diagnosis, potential treatment, etc.

He did an aspirate biopsy that day (during which I murmured that I was in love with him, because it didn't hurt at all having a monstrous needle shoved into my tender anatomy). He phoned the next day to say the cells were malignant and say his office would schedule me for an MRI, after which we'd meet again.

The MRI was Wednesday.  Thursday the good doctor left a voicemail saying the only malignancy was in the identified spot, and we needed to make discuss my decision.

The next morning, his scheduler called and said, "What do you want to do now?"

Flustered, I replied, "Well, ahhh, surgery, I suppose."

She said, "Yes, but I need to know if you want a lumpectomy or a mastectomy?" and after a mumbling sort of silence, I said, "I thought the doctor and I were supposed to discuss that," which surprised her no end, because we'd already talked about all the options.  Or so she thought.  And so he thought.

As it turns out, the nice scheduler called back later to say the surgeon had confused me with someone else (oops.), and our scheduled meet-and-greet is still on for Tuesday morning, during which we'll discuss options.

The good news is that I'm sure I'm going to be fine. People with horrible cancers? I've seen them go from a routine doctor's visit to a hospital bed and chemo in two hours. On the other hand, at this point, all I know is that I have a ductal carcinoma.  Is it localized?  Don't know. Is it likely my size 36 F left breast is going to need to be hacked off?  Don't know. (I doubt it; what I've read says the statistics are roughly equivalent no matter what I choose, but for all I know there's a big surprise waiting for me. On Tuesday. Four days away.)  My frustration comes from knowing I can participate more fully in the conversation on Tuesday if I know beforehand what the pathology reports say.

In a fit of good sense, I called the office yesterday afternoon and left a voicemail message requesting the pathology reports be mailed to me or that I could pick them up. I even went so far as to explain that I'm ADHD and my compadre is ADD and has PTSD; and with the chemical compositions of our brains, time to assimilate information prior to the meeting would be of great benefit.  Perhaps those documents are being mailed. I don't know.  Nobody called me back.

And thus it begins: information about my body is the property of numerous people, none of whom are me.  I may have to get rid of my dog or my compadre to regain my sense of personal autonomy, or maybe Tuesday will eventually arrive.  Meanwhile, frog all.

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