Talk to everyone, ask any question, read everything, evaluate for yourself, and be a pain in general

Despite all my high-flung words, I’m as guilty as anyone when it comes to accepting things and jumping to conclusions.  For example, Peter’s undergoing focused radiation for the second time.  This time, I had thought the emphasis was still on his thoracic spine (T1-6), but after talking with the radiation oncology doctor yesterday for the weekly appointment, it seems that the critical area for radiation is in fact the cervical spine, although they’re also burning the thoracic area.   Since T7-11 were critical in November, I just assumed that the T vertebrae were still the major concern.  Of course, Peter had been having lots of issues with his neck and shoulders, so I should have twigged.

Once again, I’ve reminded myself, keep asking questions, keep prodding and poking the docs and nurses, etc.    It’s easier in the hospital setting than in the clinic, it seems, at least for me.   So, in yesterday’s appointment, we looked at Peter’s scans, read the reports, asked lots of questions, which we’ll continue to do.   We need to step up making sure that we get copies of all the reports and scans, so we can study them at home, and then ask more informed questions.   Which brings up an interesting, if somewhat macabre point:  I have several pictures of Peter’s skeleton from the bone scans on my iPhone – and they came in handy when the radiation docs in the Duke ER hadn’t yet received the UCLA reports, prior to starting this current round of radiation.

So it’s a constant battle – don’t accept anything at face value, always ask questions.   Often you don’t know that you don’t know of course, or you make false assumptions (see above).  Try to figure out why you made those assumptions, and then be warned for the next time.   Yes, it’s easy to just go with the flow, so to speak, but in the health care environment, that’s the wrong way to go.   If you do this, then you might be the person I overhead saying that her husband was just diagnosed with prostate cancer and she was sure he was going to die any moment and what should she do…

I did speak with her and told her about Peter, 3 years and 7 months later, and with an especially aggressive form of prostate cancer.   Whether this made any difference to her or not I don’t know, but I felt she needed to know that things could be done.   But then I’m often an interfering so and so.   And in the medical environment, with a seriously ill husband, this is a good thing.

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