Lux et umbra vicissum…

Who among us has not looked up symptoms or information about a diagnosis on the internet?  Let’s be honest: when it comes to what’s going on inside our bodies, we feel like we have a right to as much information as we can get.  The difficult part is sorting through that information in a meaningful, non-paranoid way.  That’s where things often break down a bit for all of us, and that’s where I find myself today.

I could challenge you to look up information on almost any form of cancer and find happy news, though some might be less unhappy than others.  That’s something I should remember from the start; I should probably just avoid looking up anything at all before further testing so my stress level won’t go any higher than it already is.  Unfortunately, the need to know what’s going on is a stronger motivation than the knowledge that I might find upsetting answers, many of which probably won’t even end up applying to me.  It would be interesting to see a study of how many people either self-diagnose incorrectly or over-diagnose based on information they find on the internet.  Funny thing is, even if that number was absurdly high, most of us would likely still do it.  It’s hard not to when it can take so long to get in for the actual medical tests and specialist visits.

Choroidal metastasis, the kind of cancer with which I was diagnosed by the eye specialist, is an interesting bugger.  It’s usually either associated with breast or lung cancer, and since we know I already had breast cancer that’s the likely culprit.  That wasn’t disturbing to read.  The next part was, though.  Multiple sources say roughly the same thing: by the time you see choroidal metastases, it’s pretty late in the game of metastasis and indicates a poor prognosis.  Most patients who are diagnosed with choroidal metastatic cancer are then found to have metastases to other parts of the body, most frequently the lungs, bones, liver, and brain.

Me being me, I couldn’t just stop there.  I had to know what the symptoms of cancer in some of those other sites might be.  Since I knew next to nothing about cancer in the liver, I decided that was where to start.  The first, most common symptoms listed are loss of appetite, nausea, fatigue, and weight loss.  Whoa… let’s take a break from research for a moment to look back one year ago.

In March of 2017, I contracted a horrible stomach bug – one of those ones that has you lying on the floor in the bathroom because a) you don’t have the energy to move, and b) you may as well stay there because you’ll be back soon anyway.  Not long after the virus went away, I began having trouble eating.  Sometimes I was nauseated, but more often I just wasn’t hungry.  I felt constantly full.  This lasted for 6 months or so, the first 4 being the worst.  Over the first month or so I lost at least 30 lbs, and by the end of 4 months I had lost 50 lbs.

Now you’re probably asking me why I didn’t go to the doctor about this.  I did.  I went to my regular doc, and at first he just prescribed an anti-nausea medication.  When the lack of appetite persisted, he sent me to a GI doc.  The GI doc did an endoscopy and colonoscopy (which I’d rather never have again just because the prep is so horrible), and found nothing amiss.  So instead of any of the doctors trying to look further, the GI doc said it was probably just that my intestines hadn’t recovered from the virus I’d had and it could take up to a year.  From what I gathered when he gave me this diagnosis, it wasn’t based on any sort of scientific research but stemmed from thinking he had other patients who had had something like that happen.  Honestly, I suspect he thought I was faking, though why I would fake that I really don’t know.  It wasn’t like it was fun.

What drives me absolutely nuts is that you hear so many people saying, “Report sudden weight loss or gain immediately,” but when it actually happens no one seems to care.  My doctors know my history of cancer and it still didn’t raise any red flags.  Why?  Why did no one ever bother doing a full body scan when I was having such odd symptoms?  Why did I only get nods and pats on the head when I asked if things could indicate cancer?

Also over the past year, I developed unexplained spotting and saw my OB GYN.  She at least was trying to check me for different things, culminating in a hysteroscopy and D & C that showed nothing.  What I find odd is that, in that whole time, I never had tests on my ovaries other than her internal finger check.  Ovarian cancer has been undeniably linked to breast cancer, and it’s notoriously difficult to catch because its symptoms are so often diagnosed as other problems.  It’ll probably turn out that my ovaries are just fine, but I still want to know why that avenue of possibility wasn’t pursued further.

People are always recommending advocating for yourself when it comes to your own health, but we don’t talk much about what happens when you try to advocate for yourself and are ignored.  If I lived near a more populous area, I’d probably have a choice of doctors to go to and could relatively easily get second opinions.  Where we live, there’s not nearly as much choice, especially when it comes to specialists.  If a specialist here tells me he thinks something will go away eventually and the choice is to either wait to see if he’s right or try to get a referral to a different doc 2 hours away… well, you want to trust the first doctor.

So here I sit, almost a full year after the strange symptoms of severe loss of appetite, some nausea, definite fatigue, and significant weight loss, waiting for an oncologist to call back so I can make an appointment to check whether my previous cancer has spread anywhere other than my eye.  I hope he’ll find that the eye is the only place that seems to be affected – it’s entirely possible, though not as common – but either way I feel cheated by the system, a system which right now seems happy to let me sit around doing nothing while a relatively fast-growing cancer is working towards eradicating my vision in one eye.  Most of the doctors and nurses I’ve met are kind people, but something is broken here.