Limbo

I feel bad it took me so long to write this post.  I committed to blogging every day in April as part of a Cushing’s awareness challenge and it has been almost a week since my last post.  I just had to step away for awhile.  It is likely this break only affected me (I know these posts are not that riveting!), and that definitely takes the pressure off.  Nonetheless, I do still feel bad that I didn’t do what I promised.

I had the Gallium-68 scan on Thursday of last week and the trip to Houston and back tired me out. That is a big part of the need to take a break.  The other part is that the period of time I am in limbo, between taking a test and finding out the results of a test, is getting harder and harder as time goes on.  And it is unclear what would be heaven and what would be hell on the other side of limbo.  Heaven would not be a clear scan, as that would leave me sick and without an obvious plan for getting better.  Certainly not a scan saying I have a NET that has spread to my liver or bones or lungs, as that would leave me closer to a diagnosis but not a clear plan for getting better either.  Maybe heaven on the other side of limbo would be one clear, solitary tumor, in an easy to access location.  An imaging report that says “Patient has a neuroendocrine tumor in location X and this tumor can be seen on both the PET scan and the CT scan.”  A tumor in a location where all my symptoms would make sense and all my lab results (positive and negative) would make sense too.  Do I think this is likely to happen, based on my own history and reading about the experiences of other patients?  No.  And really, is this heaven?  This outcome is also not great, as it would also likely mean more tumors in the future.

Getting the Gallium-68 scan and all of these other specialized tests sets in motion a whole pile of emotions I would rather hide from most days.  It is like buying a ticket for a really big roller coaster instead of a run of the mill one.  The highs and lows get much bigger the more specialized the test.  You have to do it – you have to buy the ticket and get on the ride because you want to get better.  And there is some chance the more specialized test will yield a result that allows you to move forward and so even though you try not to, you really get your hopes up.  But if the more specialized test yields a negative result?  It will be all that much harder to get things figured out and the letdown will be devastating.  And so in the meantime, I oscillate between: What if I don’t have a NET? What if something else is wrong?  What could “something else” be?  Is it possible nothing is wrong?   How could nothing be wrong when I feel so awful (and some of my labs and scans DO look abnormal)?  And if there is nothing wrong, if this is just my new life after Cushing’s, am I always going to feel this crappy?  And on and on it goes.

After I finished the scan last Thursday, I was handed a CD with all the images before heading home.  I have been poring over the results obsessively since then.  Studying the areas that light up on the PET scan.  Comparing them with any potential abnormalities on the CT scan.  Comparing all my images to images online from patients that had normal scans and those that were full of tumors.  And I have been convinced, depending on the particular moment you ask me, that my scans are totally normal or really worrisome.  I think I see some things that could be concerning.  But I don’t really know.  And when I get the report, can I trust the report anyway? I have seen so many radiologists misread my scans, even when it was clear ex-post there was a real problem.  I have been torturing a friend of mine who also likes to look at these things (and is pretty good at it) by sending her daily screenshots of different parts of my body on the scans to get her opinion on whether something looks problematic or not. I think it is fair to say neither of us see a tumor the size of a baseball, but we do see more subtle things that may or may not be a problem.  We both definitely agree I am just losing my mind at this point (which we can’t readily identify on the scan either).

So, I am trying to stop looking at the damn CD. I try to remind myself that no matter what the scan says or what the eventual radiology report says, it doesn’t change my current set of labs.  It doesn’t change what has happened to my body.  It doesn’t change how I feel.  It isn’t going to change anything that happens to me today, tomorrow, next week.  It doesn’t change my eventual diagnosis.   It is hard, but I will keep trying to wait this out and maintain some sort of calm and rational perspective.

I have a bunch of results pending this week.  I should get my report from the scan any day now.  I should hear from the geneticist.  I also should receive lab results from the last round of tests I did for the Wizard.  In the meantime, my job is just to squash the internal chatter.  Some moments I am more successful than others.  I will just leave it at that.

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