The story so far…

…if only.  This isn’t fiction, it’s what’s been going on with me lately. :/  Anyway, here goes:

The story so far:

A couple weeks ago I went in to the doctor.  It was a routine checkup, just getting some more blood work done to make sure everything was on track with my hormone replacement therapy.  Now, I had recently changed physicians (my old one had moved practices) and this was just the second time I had gone in to see the new one for blood work.

Well, I’d consistently had lower testosterone levels than I should, despite reduced levels being expected since I was on testosterone blockers and inhibitors as part of my HRT.  It was bad enough, in fact, that the last time I saw my old physician, he took me off one of the standard medicines for regulating testosterone, because mine was actually too low for someone who was transitioning to female.  It was still low when I went in to see the new physician for the first time, and then when I went in a couple weeks ago it was still low.

Like: really low.

Jae got the phone call from the doctor last Friday.  I was to stop taking the remaining testosterone regulator that I was still on — I would continue to take my estrogen supplements, but my testosterone was abnormally low.  Low enough that the doctor scheduled an MRI for me in order to see if I have a developed a mass that is inhibiting my pituitary gland.

Now, the pituitary gland is this little pea sized organ located at the base of the brain.  It’s nestled in there along with the optic nerves.  I got this news last Friday, via IMs when Jae passed them on to me at work.  Needless to say, I was freaked out: I think that’s only reasonable when you hear a doctor talking about how you might have a ‘mass’ developing in your brain.

The MRI was scheduled for this Friday.  I had all weekend and all of last week to worry about it.  I joked that it was a good thing I’d been distressed enough about all the transphobic political bullshit going on that I’d asked my doctor to up my anxiety medications.  I joked that it would be awfully ironic if it turned out that I hated being masculine so much that my brain developed a tumor just to shut down my natural production of testosterone.

And I cried.  A lot.

I was worried about a lot of things: That it wasn’t benign, as most pituitary tumors are.  That it would turn out to be massive.  That it was possibly the cause of all the headaches I’ve been having (which I didn’t have before moving to the city).  That any surgery or radiation treatment or whatever to remove it might damage something else — my eyesight, or the logic I need in order to do my cubicle job, or the creativity I need to write, or my language skills… even that it might cause a personality shift, and I might end up not being the person Jae loves anymore.  I worried that it might be something that could kill me, and I worried that it might not — more than anything else, I worried about becoming a burden on my family.

And I’m still worried about those things, because this morning I had my MRI and the preliminary analysis confirms that I have a pituitary adenoma.

The real irony isn’t that my brain developed a pile of faulty cells to shut down my production of testosterone — it’s that having it confirmed that I have a brain tumor is actually a relief, because now at least I know something.  I’ll know more when I talk to my doctor next and figure out how I’m dealing with this going forward.

From what I’ve read, pituitary adenomas are typically benign, slow growing, and the ones that inhibit hormone production (rather than super charging it, as some do) have a lot fewer nasty symptoms.  They can, however, develop into something malignant over time and they can also cause serious issues if they grow too large — there’s not all that much space in a skull, after all, and it’s all pretty much already claimed.  They can typically be treated with medication, surgery, and/or radiation treatments.  Sometimes, if they aren’t seen to be growing, they’re just left alone and the patient is prescribed additional hormones to make up for the deficiency caused by the adenoma.  According to one site I researched on, treatment usually concludes within a few months.

I don’t know yet what the case will be for me.  I’m a little freaked out still that I have this thing in my head, but I’m also still riding the relief of knowing.  Not knowing over the past week was hellish.

But that’s not all.  You see, Wednesday of this week — while I was still stewing about what today’s MRI would find — we got the call that Jae’s grandma had taken a turn for the worse.  A little later we got a call that they weren’t sure she would even make it to the weekend.

We packed up that night and part of the next morning, and our friend Shae drove us the five and a half hours to Jae’s home town the next day.  Our plan was pretty simple: Shae would drive me back to the city the next day, so I would be here for my MRI today.  Then she would drive me back to Jae’s hometown, so I could at least be with Jae for the rest of the fourth of July weekend.  Jae would continue to stay there to provide her grandmother home care, along with Ess who was willing to move the materials (his computer) he needs for his job in order to be there to take care of Jae.

Now, for months Jae’s mom has been giving her grief about how her grandma wasn’t going to last another year, how Jae had to come and see her grandma before the end, how if Jae and her father got into it on FaceBook the stress would kill grandma (seriously: more than once, Jae’s mom has used the threat of ‘you’re going to kill grandma’ to lay a guilt trip on Jae for not being up in her home town for a holiday or something).  All of this is, of course, blissfully ignoring the months that Jae spent in her hometown while I stayed working in the city, during which Jae took care of her grandmother because no one else was willing to step up.  This is ignoring the fact that Jae did everything she could to get her grandma on the waiting lists for home healthcare programs — but everyone disregarded Jae’s insistence, so now Jae’s grandma is being tended by her father and his “we’re not dating but I really want you to like her and also get along with all of her kids who’s photos are in my wallet, and she’s over here all the time to help take care of grandma” friend.  This is ignoring that Jae and I joined her mom and her grandma to drive her to see some of her extended family last year (and that road trip was nightmarish in its own right) and it is ignoring all of the work that Jae put into asking about, gathering together and making end of life arrangements in accordance to her grandma’s wishes.

But now?  Jae dropped everything to get there.  She couldn’t be with me while I was finding out I have a freaking brain tumor because she had gone home to be there for her grandma.  And she’s being treated like shit.

There isn’t room for Jae or Ess at her grandma’s house, because her father’s “friend” has been staying there.  Which is really, really good of her to step up and take care of grandma — but also really, really crappy for Jae, who is in the awkward position of realizing her father — who has ignored her most of her life, since he and her mother divorced while Jae was young — is a lot happier with and cares a lot more about this other woman and her family than he ever did her.

And there isn’t room for Jae or Ess at her mom’s house — or rather, there is, but they aren’t welcome to it.  I mean: Jae’s mom has a spare bedroom.  She also has a pullout couch that turns into a bed.  The plan had long been that when the time came, Jae would move in with her grandma, and one of us would move in with her mom so we could be there for Jae.  This has been a known quantity, which has not just been ‘the plan’ — Jae’s mom has actively guilt tripped Jae for not moving down there sooner (despite the fact that she did, for months, until the toxic atmosphere got so bad she had to come home again).

But now?  We showed up yesterday.  We did not show up by surprise: we had contacted Jae’s mom the night before, when we found out how her grandma was, and made arrangements to stay there.  Only, when we get there it turns out that Jae’s mom had given away all of her spare bedding.  She originally planned on having everyone crash on the couch, without so much as a sheet provided.  Jae protested and asked about the spare bedroom.  It turns out that Jae’s mom has been using it as a changing room, and didn’t want to be inconvenienced by giving it up.  Jae put her foot down, so she and Ess had a place to sleep with actual, you know: bedding.  Except it turns out that the bed in that room had been used as a glorified dog bed (Jae’s mom has three medium sized dogs, and used to have a couple larger ones before her sister moved out) for over a year.  And since Jae’s mom hadn’t intended on offering that bed to anyone, none of it had been washed.

So, Scott and Ess spent last night in misery while I spent it looking at my upcoming MRI and wishing my wife were with me instead of with these people who have never treated her properly.  (I could go on about that for hours, but really it’s more Jae’s story to tell, so I won’t right now.)  Jae’s mom won’t even let them run the A/C — which Ess needs to make sure his computer doesn’t overheat, so he can do his job.

Basically, it has become abundantly clear that Jae is not actually welcome in her childhood home.  Since we know that someone is taking care of her grandma and Jae has gotten to see her once more, and her family has already started being nasty and dismissive of Jae… I am bringing her home.  Shae and I are going to go back there today.  I’ve already had Jae get a hotel for the night and get out of that house  — and tomorrow Shae and I are taking Jae and Ess back home with us.  I don’t expect that we will be back until the funeral.

So.  That’s what’s been going on with me.  Anxiety attacks over political attacks on trans folk, doctor’s visits, a cancer scare and related panic attacks, a brain tumor, toxic in-laws and an eventual funeral.  (Although the nurse that visits once a week was of the opinion that grandma could bounce back as long as she can keep her antibiotics down.  So… we’ll hope for the best and see what happens.  When we visited she was… confused.  A lot.  For instance: She apologized for divorcing me, and was convinced she owned the company that I work for, and that Jae had flown down instead of all of us driving together, and that one of us had come to town to receive a reward rather than to see her… yeah.  She had moments of lucidity, but they were mashed in with either jumbled memories or outright fiction.)

I’m tired.  I’m physically exhausted as an ongoing side effect of the low testosterone, and I’m emotionally exhausted from spending a week wrestling with fear of the unknown and the last few days dealing with Jae’s family, trying to take care of Jae, and hours on the road.  (Thank god for Shae: she has always been the kind of friend who takes her importance too lightly, likes to be a little on the sarcastic, edgy; pessimistic side — and is an absolute godsend when her friends are in need.)

I think it’ll be a few days before the news about the adenoma really sinks in, because right now I’m too worried about getting Jae back home.  I’me certainly too worried to be writing — I actually finished one new chapter and most of the revisions to the last chapter I posted… right before I got the news from the doctor that I was going to need an MRI.  And from that point forward it just hasn’t quit.

I’m not going to be able to use the long weekend for writing like I’d planned.  I don’t expect I’ll be emotionally prepared to write for the duration, either — but we might be surprised.  Having Jae home instead of in her home town will be a huge relief.  We’ll see.  Right now I’m rambling, and I’m going to be going out the door in just a little longer.  So I’m going to just cut off here, because I don’t know what else to say and I need to grab a change of clothes for tomorrow.

Thanks for your time.  I hope my next big post is a chapter of MNML, but I’ll try to keep the journal updated.

Take care, everyone.

–Eren Reverie

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3 responses to The story so far…


  1. Pingback: Hiatus | Midnight Moonlight

  2. Syndic

    I have absolutely no idea what to say (or write) in such a situation… For people geographically near me I usually am silently there to help instead, so it sucks that you’re all the way on the other side of the Atlantic and I have to try to come up with words – though obviously not as much as your whole situation sucks 🙁

    I will keep my fingers crossed hoping that everything that CAN turn out not as bad as it seems does so, and send you my best wishes because that’s sadly the best I can do. When life keeps kicking you like that, please know that us people out here whose life YOU have improved with your writing think of you, maybe that can at least offer a bit of comfort.

  3. Arukorstza

    Only now do I feel luck that my family and extended family just don’t communicate. It’s not that we dislike each other or anything. It’s just that we don’t feel the need to pull together as a family. My grandmother was in he hospital after almost dying from a seizure and I only learned after she’d left the hospital and visited for Christmas. That’s how much we talk. Doesn’t matter how bad things are we just don’t share with the family. Got to look put together and strong in front of the relatives and all. Yet we are always kind and well mannered to each other during the odd gathering every decade or so. Sorry. I guess I’m just incapable of understanding family drama. Because for me a family isn’t the same sort of thing. We don’t DO visits unless there’s alcohol and free food.

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