First Notes on a Diagnosis of Multiple Endocrine Neoplasia

This lovely, charming illness (about which you can read more here) has apparently always been a part of my life which has gone undiagnosed until now. That it occurs in childhood simply means patients die young. For some reason, I’ve gotten to this stage, fifty-three years and some-odd months. As the old US TV ad said, “Anchovies don’t get to be my age,” apparently. In my case, I’ve got a tumor on the thyroid, one on the adrenal gland, one on the pituitary, and (oh, yeah), a mass in the neck. That last one’s likely also been with me since childhood, although it’s in the patient’s best interests to simply be rid of whatever can be removed. So I plan to, forthwith.

It’s hard for some patients and most of the general public to realize this, but it’s the equivalent of having Elephant Man’s disease, only most of the growths are interior. I do have several exterior, though, and at least two are about to meet a similar fate.

The odds can seem a bit overwhelming. I’ve had—and this is not an exaggeration—literally hundreds of these tumors in my colon alone, and only one of them needs to turn malignant for the real trouble to begin. The patient reads the material, hears the facts, and quickly realizes the numbers stack up rather unfortunately. Now, in my case all the tests have so far come back happily, that so far I’m clear and that the lymph nodes are clear. In a later post I’ll be more specific on this point, should the biopsy results all come back the same, but you might find it interesting.

For those of you who might wind up similarly diagnosed, I’ll tell you the honest truth about biopsy needles: The doctor will tell you “they’re tiny” and they are; but that dr. may not tell you how long it is, nor what will be done with it (an in-and-out motion that reminded me of a) being violated repeatedly by the needle, or b) the weekly exploits of Sookie Stackhouse), nor how many times you’ll have to be “poked.” Folks, it ain’t like a poke on Facebook, I promise you. Personally, I prefer stuck, struck, assaulted, in no particular order. In my case it was three times per tumor. Two tumors under immediate investigation—the neck mass and the thyroid tumor—meant six “pokes.”

So what was I to do? Flee? Too late. I’d tried that earlier in the hallway and my wife was having none of it. They put a pillow under my shoulders and exposed my neck. Truly, I felt like one or both these doctors were about to reveal themselves as vampires. So I decided I’d show them a mask. Who can take pain? Mick Foley, that’s who. So I made jokes I don’t even remember (bear in mind, no anaesthetic) and clamped my hands together at the waist.

And counted down from six.

The first time the needle went in I honestly thought Nobody should ever romanticize being bitten by a vampire because it hurts like hell. Don’t be fooled—a hunky guy or beautiful woman who bites holes in your neck IS STILL BITING HOLES IN YOUR NECK. Or in my case piercing a long way down. It’s not just the circumference of the needle but the depth and what, as I say, they do with it.

It hurt. Sure. But not for long. And when it was over I sat straight up and walked out under my own power. No problems.

The diagnosis explains a great many symptoms I’ve experienced all my life. The muscle cramps that come on without warning, blinding headaches, etc., none of it fun.

A blood test will determine whether you have it, but look to heredity as well. Certain large moles, café-au-lait marks on the backs of the legs are potential indicators. And though it certainly is rare, I want other people who have it to know there certainly are others who are dealing with it, the numbers game and all. After the thyroid’s removed, a major part of the threat’s gone. So you’re on iodine pills for the rest of your life? So what? I feel like I take a pharmacy every morning already; what’s some iodine? I don’t care. Then the dance goes on.

I’ve also taken the liberty of giving each tumor a name, after the manner of a young boy in the US. The neck mass, for example, is Newt. Pain in the neck. The thyroid tumor’s name is Palin. (It was too hard to name everybody on the Right I consider to be less-than-benign forces in politics; thankfully, not even I have that many tumors) The one on the adrenal gland, naturally, is Rush.  And the sooner I have them out, the better. Perhaps America should consider doing the same with its rightist mouthpieces for the American oligarchy.

But I digress….

In general, while I know this illness has a small demographic, for which I’m grateful, it’s important that anyone who might have it in the family be checked, because when the thyroid tumor turns malignant and gets into the bones, well, let’s just say there’s nothing science can do but suggest last-vacation destinations. I’m not quite ready yet to finalize my bucket list, you see, so I’m having the thyroid and the mass removed soon. See ya, Newt. So long, Palin, you’ve been palin’ a long time already.

More on all this in future posts.


About johnwylam1957

I'm a poet and teacher now living in Toronto, Ontario, Canada.
This entry was posted in Culture/Politics, Notes on Living and Dealing with Illness. Bookmark the permalink.

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