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The Waiting Game

A few months ago, I had the privilege of acting as a judge for one of the preliminary rounds of Grad Slam at UCR, a competition where graduate students make a three minute presentation designed to be a capsule of their work: easy to digest, even for a layperson. I've done this a couple of times now and I'm always impressed by their presentations. One of the presenters studied the psychological effects of that period between diagnostics and getting the results, and how stressful that can be. He dubbed his study "the waiting game".

This past summer -- hell, this past year, and longer -- has been that for me. If you read my conversation with Kyra Rabinov over at Literary Mama, you'll see that I allude to it: "As of this writing, I don't know whether I have cancer, or whether I don't, and the waiting is excruciating." The conversation with Kyra was begun via email in April. The fully edited version went live in September. In between, and the waiting, was excruciating.

It all goes back to feeling unwell before my hypothroidism diagnosis. After the surgery, I felt fine, for a while, but then, gradually, I began feeling unwell again. I mentioned this to my primary care physician, and my various aches, for which she sent me for x-rays, to physical therapy, to a chiropractor; none of that helped. Then she sent me to an orthopedist, ostensibly for my hip, but I made clear it wasn't just my hip that was bothering me. After I relayed all of my concerns, then he prodded me in my collarbone, among other places, adn with each jab I winced. Then he looked at me and said, "You have Fibromyalgia." I started crying then and there, because it seemed finally someone was listening and could put a name on what I was feeling. He then referred me to his colleague, a pain management specialist, who confirmed the diagnosis, and prescribed a pill: Lyrica. I began by taking one, then upped it, and upped it to whatever was the max, and no real effect, except I felt stoned all the time. Unsafe to drive. So, I stopped, but not before I'd gained a ton of weight -- figuratively speaking of course. That should have been my first clue. I switched primary care doctors, who then prescribed Gabapentin. Again, no real change in how I felt, except for feeling stoned. So I asked to be referred to a rheumatologist.

When my hypothyroidism was diagnosed, it was deemed due to Hashimoto's Thyroiditis, an autoimmune disorder. It seemed safe to assume then, considering that once you have one autoimmune disorder you have a higher likelihood of developing another, that maybe I have been laboring with another autoimmune disorder. So, I again explained everything, this time to the rheumatologist, who also took me seriously. He ordered tests: lupus, rheumatoid arthritis, ankylosing spondylosis, hepatitis, and maybe a few other things thrown in there for good measure -- I can't even remember it all now. Nothing was conclusive. The only thing out of range consistently was my C-reactive protein, which had consistently been high for as long as I've been being tested for it. That is, until he ordered a whole body nuclear bone scan, which seemed to show increased uptake in skull and sternum, setting off alarm bells. Increased uptake indicates metabolic activity in the bone, e.g. there is loss and regeneration of bone at a rate that is more rapid than is usually scene.

This alarm said, do more tests. So we did. X-rays seemed to confirm the increased uptake, and in fact showed a "Questionable 2.4 cm lytic lesion in the sternum" and "Small lucencies in the calvarium could represent lytic lesions including multiple myeloma or metastatic disease." Further, my blood word showed a trace of M Component, which is indicative of multiple myeloma. So now we had not just one but three separate diagnostic tests which all pointed in the same direction. I was referred to an oncologist who sent me for a PET-CT.

The PET-CT showed... nothing. None of the previous imaging was confirmed. And a repeat of the blood work detected no M Component.

The only thing I'm sure of now is that doctors can't be sure of anything, and that diagnostic tests are only as accurate as the human interpreting them; which means, they are always fallible.

Since that time, I've now switched providers and am being seen at Loma Linda. It feels a bit like back to square one, except, not really. Right now I'm on amitryptiline. Waiting to see if that helps.

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