My plan, their plan

So I finally heard back from the doctors, we chatted, they discussed, they called me back, we chatted some more….

Their plan was to do whatever it was going to take to find any sort of hidden bacterial infection.  Maybe we could start with a CT scan, and some sort of radioactive biliary test, and more blood work. 

My plan – since I was sort of getting better all by myself, and I’ve had SO MANY tests and procedures and so much diagnostic radiation – my plan was that since I’d successfully waited and maybe even started recovering while I was patiently waiting for them to get their acts together, I’d just keep waiting and recovering.  Whatever they were looking for obviously wasn’t getting worse.  If the blood tests showed that it was a bacterial infection, my body was obviously making the right kind of cells for them to get all worked up about  find.  And I promised that if I started getting worse again, I’d go directly to the ER, do not pass Go, do not collect $200.00…

I talked with Betsy about my decision making process… if I was deciding to not cooperate because I was truly feeling better, OK…. if it was because I was rationalizing because I was tired of having so many tests, that was not OK… I think it was the former, because on Wednesday, Thursday and Friday, I would have begged for ANY test if they would have promised me they would have fixed my sickness afterwards. 

So anyway, I think I’m starting to heal from whatever it is/was… and I really think I’m not any more comfortable with the whole “not knowing” concept than the oncologist, the surgeon, and Betsy… but gosh I’m tired of getting scanned, radiated, contrasted, phlebotomized, etc.  You know, these tests aren’t risk free, either (or free like money-free 🙂 )

Going back to the “D word” concept – no doubt they are more willing to listen to my plan since I have the same letters after my name as they do after theirs.  This past few days has really made me think.  If it’s this hard to navigate the system when you CAN “use the D word,”  I just can’t imagine how frustrating, confusing, frightening and … hmmm… what’s the opposite of empowering?  Well, whatever that word is, it’s not good. 

We’ll see.  The medical jargon is “watchful waiting”…. right now a couch and some knitting are calling me.

Love, Elizabeth

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