I’m my very own medical drama

by Janie Jones

As some of you may recall, last fall I was finally diagnosed with an optic nerve sheath meningioma.  Not multiple sclerosis, thank heavens, and not really cancer, also thank my lucky stars, but still a diagnosis that could slowly lead to blindness on my affected left optic nerve.  The only treatment for said diagnosis is radiation therapy.  With luck, the tumor will be destroyed preventing further vision impairment.  With a little more luck we hope to find no permanent damage done to the nerve and a return to my “normal” state of simple myopia.

Because last fall I had neither time to go to 28 consecutive days of radiation treatments nor the money to pay for the deductible on said treatments much less the money to travel to the nearest facility with the necessary equipment for 28 consecutive days, I have been waiting until this summer to begin.

Last week I had my third MRI and a consultation with the radiation oncologist, so they could say.  “Ah, yes, this thing we are 99% sure is a tumor has grown.  Of course, the only way we can be 100% sure it is a tumor is to do a biopsy, but naturally we can’t do a biopsy on your optic nerve sheath without causing brain damage and likely destroying your optic nerve which would render a positive diagnosis useless because by then you’d have brain damage and likely be blind so there’d be no point in treating you.”


Fast forward to consent forms signed.

The next step was a CAT scan to compare with my 3 MRI’s so they could map the inside of my noggin.  The plan is to send at least three separate beams of xray radiation into my head from different angles.  This will reduce the amount of radiation the “normal” tissues are exposed to while being able to concentrate a therapeutically high radiation dose within 1-2 millimeters of my tumor.  Naturally they are going to chart the direction of the radiation beams to avoid my good eye and the most delicate tissue structures.

Yesterday I had the CAT scan with contrast.  It went fine, excepting that I was there for three hours and nearly passed out getting my IV put in…  I hate IV’s.  It’s one of those totally stupid irrational phobias, but no matter how I scold myself in attempt to “get a grip” I fail.  Plus it didn’t help that I was cold, sitting in a flimsy hospital gown under a AC vent set to arctic on a day when it was barely 65 outside, and perched precariously on a narrow table with one bum cheek hanging free and trying to hold up my arm so the poor nurse could find a vein in one of the dimmest hospital rooms I’d ever been in.  Not a good situation.  Then the nurse went through my vein in my hand, I panicked and the whole thing went south from there.

Anyway, after a calm down period where I managed to pull myself back from the brink of passing out, heroically managed not to vomit my almond danish from breakfast 3 hours earlier, I was offered a warm blanket, and allowed to lay back on the table so I couldn’t see what was going on, which was much more conducive to having a cold needle jammed into your arm instead of your hand.

After that, the rest was cake.

The rest mainly included having a neck rest made to conform to the shape of my neck and head and a mask that would hold my head to the headrest and the table.  Obviously we wouldn’t want me to twitch during radiation therapy and nuke myself in the wrong place.  Leif says I should get the staff to take my picture all strapped into the mask.  I might ask, I was a little freaked out yesterday and never even thought to bring my camera.  Anyway it all ended with the CAT scan, which itself was a walk in the park after 3 MRIs.  It was much quieter and faster.  Overall, though, I would much rather have the longer, noisy MRI; me hates me some IV’s, man.

Sadly, I did find out that despite saving up my money for my procedure, they will want me to get at least one follow-up MRI.  The problem is not with the MRI itself, it’s with the fact that by the time they’ll be ready to schedule the follow up, I’ll be in a new benefit year and I’ll have to magic into being the money to cover a whole new year’s deductible.

Okay, Yard Sale time boys and girls!!!

11 Responses to “I’m my very own medical drama”

  1. Normally I like medical dramas; it’s less fun when it’s not fiction though…
    Anyway, did you say cake?

    • Mmmm cake. I did say cake but there was no cake. There was, however, a monster sized 3 berry sundae as a reward for surviving with only a minor assault to my dignity.

  2. I think it’s appropriate in all medical facilities to tell the staff you will go berserk without meds. Even if they don’t give you any, you can do all kinds of things without any repercussions.

    • Just the IV part was awful. The rest was easy, I just laid on the table and tried not to fall asleep and snore. Now that would be embarrassing. As for when the radiation starts, I’m staying optimistic that all will go smoothly.

  3. Like speccy says, this would be a really funny post if it wasn’t true, and about somebody I care about. I so hope it all goes well. Love Tin x

  4. First of all, sorry much that you’re having to go through all this. But secondly…. when they get you into the mask, gesture for one of the nurses to lean closer, then whisper, “Can you hear the lambs, Clarice?”

    • LOL! That would be totally funny. Except, once the mask is in place it is bolted to the table and fits so snugly one can’t really open one’s mouth to speak. They probably are glad of that….


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