The Problem is All Inside Your Head She Said to Me

We’ve moved into Hurry-Up-and-Wait, Phase II.

My earlier facts were correct, but my appointment with my endocrinologist today filled in some vital details. My pituitary tumor, which sits in the hollow of my brain, has grown dramatically. It is starting to move into my sinus cavity, and it is a concern. But it continues to grow slowly and the doctors will want to know more about it before they act.

It appears that the initial diagnosis way back in 1993 was in error, although the specialist then supposedly didn’t make a mistake. It presented and responded like a prolactinoma, a fairly common pituitary tumor. But if it were ever that, it’s obviously not that any more — because it continues to grow, because the treatment I’ve received isn’t 100 percent effective, and because I am enduring clinically low levels of several hormones. So it appears to be an exceedingly rare hybrid neuro-endocrine tumor, and that makes it “interesting.” It requires closer scrutiny.

I will be undergoing more test and seeing a neurosurgeon in 5-6 months. My endocrinologist says the neurosurgeon will be in a better position to know if the tumor’s growth is affecting my migraines, as I suspect.

So what’s next? Several things. The hormone replacement therapy isn’t working, so we’re increasing the frequency of treatment. Good thing I have such a nice tight butt for injections — the buttocks of a fit 27-year-old, the nurse says. I will be getting another MRI, and will have my blood tested regularly. I’m also going to see if I have osteoporosis,* as that’s one serious side effect of chronically low hormone levels (and there is good reason to believe that my levels have been clinically low for a decade). My eyesight will have to be checked at hospital to see if the tumor is pressing on the optic nerve, and affecting my vision. The list of tests is as long as my arm.

My timing might be auspicious. My bloodwork and symptoms make me eligible for a new clinical trial of new version of an old drug, so I’m going to explore that possibility with researchers. It’s possible this treatment will begin before I see the endocrinologist again, although the clinical trial sounds like it could be a harrowing ordeal.

So, it’s obvious that I’m going to spend a lot of time in waiting rooms. It’s a damn good thing that I love to read.**

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* In my last days of martial arts, I broke several bones in a couple of incidents that seemed superficially harmless. It has preyed on my mind for several years that I may have osteoporosis.

** Help me endure the boredom of waiting rooms by recommending some books, particularly some YA novels. I’ll also use that time to plot and write my next novel. Trying to find the silver lining.