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10 March 2015 @ 01:14 am
Where Eithni Went for the Winter  
So, you may have noticed that I was essentially AWOL for November, December, and January, and there's good reason for that. November 1, I got married. The following weekend was TeslaCon, a big steampunk event in Madison. Then I presented in a conference in Arizona the following weekend. Then we had a weekend off before hosting the family for Thanksgiving...

Somewhere in there, I started having spectacular headaches. Initially, we chalked it up to coming off medications, since I had stopped my birth control because we want to spawn. I'm prone to hormonal migraines, so this made sense. But then they dragged on... and on... and on... I was having pretty much daily headaches and two or three migraines a week. Screen time made them worse. Reading made them worse. Moving made them worse. I was dragging myself to work, but doing very little else. I'd come home, exhausted, and take a nap before eating dinner and going to bed around 10PM. (NOT normal for me by a long stretch!) The house was getting to be a disaster, wedding stuff stalled out all over the house, I had hundreds of unread emails... I went to see my PCP in December and he sort of blew me off. I didn't go off on him since, yeah, I had been on birth control for a LONG time and maybe I was just not responding well to coming off of it. I still had not had a menstrual cycle but the pregnancy tests all said negative. Sometimes these things take months to normalize, he consoled me. Great. Months of headaches. Awesome...

Christmas came and went, and New Years, and I was still not feeling so well. In fact, the headaches seemed to be getting WORSE, not better. Then I woke up in the middle of the night one night with my tshirt soaked through on one side. "Huh. That's not normal... Did I spill a beverage? Nope. Ceiling leaking? Nope... Er? Boob leakage! Awesome." :P LIke any good wife who has discovered something weird and odd, I toddled off to show my sweetie ("Hey honey, look what I can do!"), who was shocked, horrified, and fascinated in turn. :D

I HAD noticed that my breasts were somewhat larger than usual (about a full cup, maybe two) just that morning but, again, I had chalked it up to hormonal changes. Since we were hoping to get pregnant, I hoped that perhaps this was maybe a pregnancy-related hormonal change and again did a preganancy test again, but it still was negative, so off to the doctor for me...

I called my insurance the next day - for added fun, my insurance had changed on 1/1/15 and I had not yet established with a primary, so I sort of had to take who was available in the next few days. I lucked out and the PCP I got was competent and kind. I explained my issues and he did a quick exam. There are a few things that can cause these symptoms, so we started with the easy ones. Pregnancy? Clinic test confirms no. Hypothyroid (not out of the question, since I already take thyroid supplements)? Blood test confirms optimal TSH level of about 1, so no. Prolactin level? Whoo, baby! We have a winner! My level was over six times the upper bound of normal. o.O So, the things that can cause an elevated prolactin level range from not good (pituitary tumor) to VERY, VERY BAD (prolactin secreting cancer... somewhere). This was Friday afternoon and I got scheduled for an MRI the next Tuesday, which is about as STAT as you can get without some serious life threatening type symptoms, so I was pretty tense all weekend...

Now, it also bears mentioning, that things had been very tense and busy at work. I had recently become the head of a new department (all existing staff, just reorganized) and it was extremely busy with end of year reporting/beginning of year transitions plus audit preparation. I was feeling super overwhelmed and upset (which, in retrospect, duh - crazy hormones) and almost quit on Thursday. Luckily, my boss didn't have time to meet with me until Monday morning, so I had some time to cool down and to think of strategies for dealing with the issues we have been having. So, I am in this super intense meeting with her and I have ENTIRELY lost my voice, so we are whispering back and forth (because she can't make herself talk in a conversation where I am whispering). We are trying to figure out a way to make it even POSSIBLE for me to continue doing my job when my phone rings and I look at her and whisper "Gotta take this, I'll be back." She looked shocked - I mean, who the hell walks out of that sort of one-on-one meeting? - but that was nothing to how she looked when I got back and explained that, no, really, we needed to get this stuff straightened out in case I had, you know, brain cancer or something. Holy shit, did that turn this meeting around! I didn't get all the things I really need to function well, but I DID get a temporary one day a  week admin assistant for faxing and filing and a change in my schedule so I could start at 10 and have 90 minutes of peace at the end of the day to actually get work done. She's still working on more help and more permanent solutions to the problems in the department, which will largely depend on how things go with our sleazebag Governor and his excreble budget. And, as I was leaving, she gave me a letter - with all the other things we had discussed, she had nearly forgotten, but I had gotten a raise. She was almost apologetic about it - she said she knew it wouldn't make up for the other things going on, but maybe it would help. When I looked at it later, it was an actual, for realsies, more than cost-of-inflation raise! That's the first time that has happened to me at this not-for-profit do-gooder job!

Anyway, Tuesday morning, we had to be at the hospital stoopidly early, but the Mister was a wonderful mate and went with me, even though he is less of a morning person than I am. The actual MRI went pretty quickly and the tech didn't have to re-take any pictures since I was super still.

Then there was the waiting.

And the waiting.

It wasn't even two days, but I was sure the suspense was going to kill me.

Finally, the doctor called, with news of the best possible option - a pituitary adenoma.

brain w arrow

I needed to see an endocrinologist to get the prolactin levels under control and to see if I needed it surgically removed. The initial appointment was for the end of March, two and a half months after the January diagnosis, but I lucked out and snagged an appointment off the waitlist two weeks later. (The nurse called and said "We have a cancellation available." "Great," I said, "I'll take it." "But I haven't told you when it is!" she said. "I'll still take it!" Luckily, my job is super flexible and I was able to drop everything and run across town for an appointment 75 minutes later!) My endocrinologist was also great and efficient and I got put on a prolactin-antagionizing drug. The first few weeks were rough - I skipped all the normal horrible side effects and instead got middle-of-the-night panic attacks. However, slowly, the panic attacks and the headaches subsided. Six weeks in and my levels are in the normal range. I won't even need surgery unless the tumor starts impinging on the optic nerve. I'll stay on the drugs forever unless I DO get pregnant and then I'll have to come off of them and hope for the best for a year or so...

Oi. So that's why I disappeared this winter. :p
Current Mood: thankfulthankful
jtdiii: Biojtdiii on March 10th, 2015 10:33 am (UTC)

I am very, very sorry to say, welcome to the club. As I schedule my yearly MRI visit to monitor for growth.
eithni: drugzeithni on March 13th, 2015 05:36 am (UTC)
Sorry to hear it! So far, it seems like I'll be treatable with oral drugs unless it slumps onto my optic nerve. (My tumor has a gooey center! :P) Here's to nice, benign brain tumors, eh?
Kareinakareina on March 10th, 2015 12:09 pm (UTC)
Ow!That sounds like a very rough patch in the midst of what was scheduled to be really good stuff going on. It sounds kind of encouraging for getting better from here, and I hope that you are able to keep this from ever being a quality-of-life impacting problem again. Thanks for catching us up, and including cool full colour photos of your brain.
eithni: geekeithni on March 13th, 2015 05:45 am (UTC)
I know! The brain pictures were the big silver lining to the whole endeavor. The crossections of my eyeballs are particularly impressive. :D
raventhourne on March 10th, 2015 02:37 pm (UTC)

Hugs and love!
eithni: drugzeithni on March 13th, 2015 05:46 am (UTC)
Thanks! All's well that ends well, and it looks like we'll be OK!
Aaron (Rusty) Lloydrustmon on March 11th, 2015 12:18 am (UTC)
Booooo. *hugs*
eithni: drugzeithni on March 13th, 2015 05:46 am (UTC)
Thanks for the support!
DameJ: Grad Picturedamej on March 11th, 2015 01:14 am (UTC)
How scary. I'm glad things are manageable with medication.
eithni: drugzeithni on March 13th, 2015 05:47 am (UTC)
Yeah, January was not a good month. :/ Things are getting better now and I mostly just feel lucky.
Saraidhsaraidh on March 11th, 2015 09:07 pm (UTC)
Yikes, that's pretty scary. I'm glad you got an answer, and it was the best of the available options. I'm also glad our boss was able to make some adjustments to help you.
eithni: drugzeithni on March 13th, 2015 05:48 am (UTC)
Yeah, January was no fun. Work is incrementally better and I am hoping to eventually get some more help, but I'll take what I can get for now. :/
world_rim_walkeworld_rim_walke on March 12th, 2015 05:00 pm (UTC)
Wow. Best of luck.
eithni: drugzeithni on March 13th, 2015 05:49 am (UTC)
tcsumnertcsumner on March 17th, 2015 02:04 am (UTC)
Gah! Here's to it staying small and manageable, even during pregnancy!
eithni: jumpingeithni on March 17th, 2015 03:10 am (UTC)
Elizabethliz_bet on March 17th, 2015 02:11 am (UTC)
eek! :/ I'm so glad things are improving! Fingers crossed the drugs keep that tumor in line.. no slumping allowed! ;)
eithni: jumpingeithni on March 17th, 2015 05:32 am (UTC)
A-men! Only perky tumors allowed!