Thursday, October 31, 2013


We've been so incredibly blessed thus far with our health insurance covering everything I've needed, with the exception of one doctor at Duke using their billing code for the hospital and not the cancer center, which was an easy fix.

So far.

Yesterday, I went to Georgetown for my repeat MRI (which I'll have, potentially, for the next decade), and found out that my insurance thinks I'm all better and don't need ongoing care or repeat MRIs.


I would love to think that's the case, but if I'm being honest, I've had a REALLY bad couple of weeks. I know that everyone told me that the year after treatment could have ups and downs, and I'm doing okay this week, but two weeks ago I literally thought I was going to die, the pain had gotten so bad.  I wasn't functional, I wasn't happy, and it made me happy that I was going to get the silly MRI so I'd know that nothing was wrong and it was just a bad few weeks of healing.

No dice.

Apparently, what happens now is my doctors are involved in a "peer to peer review" process where they'll work to convince our health insurance company that I need to have treatment be ongoing since they are working on the assumption that my ependymoma will come back at some point.  (I'd like to work on the assumption that it's not, but I'll be okay if it does- still, someone has to be the 20-30%, and I pick me!) So far it's just my oncologist at Georgetown, but after we hear back from our insurance with details, we may get my radiation oncologist at Duke/the social workers at Duke involved.

I understand that this is all par for the course with insurance deciding that they're done paying, however, with the timing being what it is with the Affordable Care Act and friends on Facebook posting about how they're losing their coverage, I spent all day yesterday petrified that I was going to lose my insurance altogether and we'd never be able to afford my care.  Then I had nightmares all night long about it, although one of them was okay- I was getting interviewed on a combined Colbert Report/Daily Show and I was really funny ;)

Silver linings, people.

Anyhow, now we just have to wait on insurance and my doctors to advocate for me to get what they're telling me I need.  More fun in the journey, right?
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