Wednesday, November 16, 2016
Weird. I dreamed Danae flew to Tibet with another dude. Make of that what you will.
So the super subspecialist still doesn’t know the diagnosis, cause, treatment or prognosis of Danae’s blindness and is sending this off to another super sub specialist for a second opinion. They are convinced it’s the retina, which I suppose is good, because that means it’s not the brain, and not ischemia, stroke, aneurysm, multiple sclerosis, cancer, tumor, etc level of badness. I suppose I should be happy for that. And I am. Don’t get me wrong. Just frustrated to not have a diagnosis.
Ok, so now the older super duper subspecialist has never seen this before. Apparently, the plan is if things don’t change or get worse, there’s nothing to do. And if things do change or get worse, there’s still probably nothing to do. Grrr. Well, at least she’s not dying. Better a blind wife than a dead one, I always say. Actually, no. I don’t think I’ve ever said that before in my life. Why would I? What’s going on that I would ever need to say that? Well, anyway, I do believe better to have her blind than dead. Something tells me this won’t win me husband of the year.
Well, I go and do more surgery with Rollin. It’s actually kinda fun. I enjoy it. I should have been doing this all along the last six years. I’m just so stinking busy to try to spend time learning a little bit of basic surgery too. But at least I find it interesting. Better than the menial labor I’m usually stuck doing. Now when Danae goes totally blind, there will still be me to operate at the hospital! God help us. No, seriously. God help us all.
Juniper got her yellow fever vaccine in preparation for her return to Tchad. That’s one step closer!
Danae got a last-second appointment with the infectious disease specialist today. And the appointment with the internist got bumped up to tomorrow. That’s actually very good news.
The infectious disease and tropical medicine specialist informed Danae today that malaria prophylaxis is perfect and scolded her for not being on it. Anybody who has spent any time in Bere has witnessed that double-dose doxycycline, malarone, mefloquine, primaquine and fansidar ALL fail EVERY single year we have been here. Then the doc told us that artemisinins don’t have any resistance in Africa. I’ve had patients with fever, aches, positive malaria tests, I put them on double-dose artemether for a week, they still have fever, aches, positive malaria tests. Then I put them on quinine and they get better. Why do no specialists every believe this?
This evening the kids and I look at pictures of Mommy on the computer, something we have done most nights while she’s been gone. We look at pictures of before we were married, before we had kids, when we just had Lyol, our trips around the world to Europe and Costa Rica and Turkey and Cayman Islands and Africa, our road trips with the kids through Colorado and Utah. It’s fun. The kids love it. And they ask sooo many questions. It’s actually really cute.
The kids go to bed. Danae is waiting to get her MRA. Then she will get her labs done.
And Danae and I are still able to joke. ‘Well, at least we can now get rid of the blindfold in the bedroom, since it’ll just be redundant.’ This woman was made perfect just for me.
(Full disclosure: There never really was a blindfold in the bedroom, not that it’s any of your business.)
Thursday, November 17, 2016
I dreamed we moved back next to our old house in Wilbraham, Massachusetts, getting in late and then going to friends’ house for dinner and games. When we got back, it was snowing and our house was broken into. Then we took the extended family to Winter Park, Colorado, which had developed into a big city with double decker busses and we got lost from each other and… weird.
Well, we’re still awaiting test results. Danae is still not authorized by the General Conference to return to Tchad, which is still annoying, but I still appreciate they want to protect us. All in all, the GC is a decent employer.
Danae sees the internal medicine doctor. A whole bunch of ophthalmologists and retinal specialists believe the problem is the retina. They just don’t know what. I’m not sure what we think the internist will find. But whatever. More blood work done.
Took the kids to the river again! It was really fun. Too stressful to watch three little kids by myself, so I make them all wear lifejackets, which they don’t like, but I tell them is an absolute non-negotiable prerequisite to going to the river. And it rained while we were there!!! With thunder and everything. Addison still has an irrational fear of thunder, so we packed up and drove back early, picking up some Tchadians on the way. They were happy to get out of the rain and have a chauffeur service drop them off at their door!
It’s bedtime now and still raining, super strange for November. And usually a romantic thing, but alas… I miss my wife.
Friday, November 18, 2016
Last night I was dead asleep by nine with the sound of rain on the tin roof. So peaceful.
Now I’m up by five every morning. Less peaceful.
The ‘choo choo’ of my phone tells me I have a text message. I’m already awake. I look at the clock. 4:59. Yup, by five every day.
The text message reads: ‘I might have an aneurysm. It sounds like I do.”
Exhale. Now inhale. Hold it. Now exhale. Now just keep on repeating that for the rest of your life. Inhale. Exhale. Crap. Inhale. Exhale. What is going on? Inhale. Exhale. How do you respond to THAT? Inhale Exhale.
5:00. I write back: ‘OK’.
I’m evidently wordy this morning.
OK? This is not OK. Maybe ‘OK’ wasn’t top on the list of best responses. Why did I just write that? Seriously? What is going on? I thought we ruled this out already.
MRA shows a 1.5mm aneurysm versus infundibulum. Infundibulum. If ever there was a radiology word… infundibulum. 1.5mm. That’s small. Like, really small. As in the size of a… thing that’s really small. Can neurosurgery even clip or coil that, or just observe? Can that even be observed in Tchad? What should I do now? Carry a hand-drill with me everywhere I go so I can drill a Burr hole into her skull in case her aneurysm explodes? Like on trips and hikes and things? 1.5mm. Those are too small to explode, right? Maybe just leak a little.
Danae goes on, radiology recommends getting a CT Angiogram. Her ophthalmologist doesn’t think the aneurysm is causing the blindness, but some other ophthalmologists we’re in touch with definitely do, as well as a neurosurgeon who’s willing to operate on it. We did the MRA specifically for the possibility of aneurysm, and now it looks like there is one, so…
Wait. What? We’re having brain surgery now? I seriously thought we were in the clear when I went to bed last night. The MRA was supposed to be normal, like the MRI, then we’d be done with this. The MRA may have underestimated the aneurysm? It may be more than 1.5mm?
Sheesh. Danae’s freaking out. Now I’m freaking out. I finally got a diagnosis, sort of, that leaves me a living wife, albeit one who risks losing the other ¾ of her vision, but living at least, and now she has an aneurysm. Oh calm down. Lots of people have aneurysms. 1.5mm is nothing.
Well, we still joke. I remind her syphilis is a major cause of aneurysms. She reminds me those are often not in the brain. We joke about how cheaply you can buy a second wife here in Tchad. I joke that I want a fifth kid now because we’ve been apart for so long, I’m missing out on seeing Juniper grow up. (It’s a joke. We’re done having kids.) Danae sends me a picture of her making a kissy-guppy face. I tell her the kissy-guppy face is going to look awful strange when her aneurysm blows and she has a facial droop. We joke about switching roles and how soon I’ll be the one in the operating room saving lives and she’ll be the one drooling on the couch at home.
We decide to go ahead and get the CTA radiology recommends.
The kids and I are still looking at our pictures. Juniper posing with bonsai juniper trees. Juniper eating her first birthday cake in America without us. It’s beginning to feel like two separate family leading separate lives, oceans apart. It’s not a good feeling.
I tell Danae about the information I’m finding on aneurysms. Up to 3.6% of Americans have aneurysms. An anterior communicating artery aneurysm could impinge on those optic nerves in the right spot to cause her symptoms. Risk factors include obesity, alcohol, cocaine, syphilis. Sounds like Danae is at high risk, then. I point out to Danae that ‘Aneurysms of the ACA cause psychopathology and frontal lobe pathology. So yeah, we should definitely get the CTA.’
I’m now obsessed with reading everything in the house about aneurysms, just as I read everything I could about White Dot Syndrome a few days ago. And just as I was reading everything I could about Multiple Sclerosis before that. Now every time she has a headache, I’ll be wondering…
‘So do you want me there for your surgery? Hopefully you can suck mashed potatoes post-op through a straw for Thanksgiving.’ I know how she loves mashed potatoes.
Her labs come back negative, everything normal. HIV, CMP, RPR (no syphilis after all, whew!), thyroid, auto-immune, CBC, ESR, etc. I still wish they had ordered CRP, folate, B1, B3, B6, B9, B12, ace lysozyme, quantiferon gold. I know it’s overkill, but it’s my wife!
The CTA is scheduled now for… NOW!!! She got a last-second slot and heads over. The rest of her schedule now comes through. Danae will see her neuro-ophthalmologist and her retinal specialist before the CTA.
At 4:26, I’m rummaging through the storage room looking for some surgical supplies and texting Danae. She’s texting back, trying to help me find them.
At 4:42, I get a text: ‘A little dizzy, feel a little flushed, I’m probably just freaking out.’
Whatever, Danae has ice in her veins. I’m the emotional one. She’s joking again. I write back to joke, but she’s not having it this time. Oh boy. Talk to me, Baby. Silence.
At 4:55: ‘I think I just had an anxiety attack.’
I run down a list of alternatives with her. Malaria, fever, sweating, chills, nausea, shortness of breath, ectopic pregnancy? Seems like anxiety attack. But she never had one before. There’s no EKG at the ophthalmologist’s, unsurprisingly, but her vital signs are normal. Wish we had a pregnancy test.
‘Is there a defibrillator in their office and somebody who knows how to use it? You know… in case… your heart… like… stops… and stuff… or whatever.’ How do you ask your doctor-wife that? How much more surreal can the last two weeks have been? In retrospect, asking that question might not have been good for her anxiety. She didn’t have a panic attack when we first met, or our first kiss, or when we started dating, or when we first said ‘I love you’, or when I proposed, or when we got married… Should I be offended that now she’s having a panic attack, but not then? Or maybe flattered that she was just so sure about me? Either way, she doesn’t respond for over an hour.
The CTA is now done. The preliminary read is no aneurysm. At least nothing big enough to need to be dealt with right away.
Danae’s neuro-ophthalmologist just left for vacation, but leaves Danae’s records for her, as well as a prescription for steroids. I presume not to just get her buff. She also leaves behind a diagnosis of AZOOR, or Acute Zonal Occult Outer Retinopathy. So I guess that’s her diagnosis for the moment. Some argue it’s one of the White Dot Syndromes. It kinda seems to be a leftover diagnosis of grab bag mishmash for people that don’t fit into other diagnoses. But it sounds accurate. This is Acute. It is Zonal. It is Occult, for all we can tell. It is Outer. And it is a Retinopathy, or so it seems.
So there it is. There are no more tests to do. Nobody left to consult.
AZOOR. Sometimes it gets better. Sometimes it progresses to cellular death of the retina. Sometimes it progresses to complete blindness. Not a whole lot is known about it. I certainly never learned anything about it in medical school.
We joke that Danae has Ocular Fibromyalgia. It seems similarly nebulous.
I guess we’ll just rebook tickets for Sunday and get Danae home by Monday night. I trust there will be no more roller-coaster for a long time. These last two weeks have been enough up and down as it is.
Sabbath, November 19, 2016
Happy Sabbath! Well, we’re still joking about going blind and having panic attacks. Well, I am. Danae is fine with the blindness jokes, and she has plenty of her own. But she’s not joking about the panic attacks. She really had a sense of doom there for an hour or two.
‘Just so you know, I got out my old eye patch this morning in anticipation of your return. I’ve always had a pirate fantasy.’ ‘I figure I can put in 10-20 years and then get a trade-in.’ ‘You know my next wife will be uglier.’
‘HA! Cause you’ll be old, Olen!’
‘I am old already. But she’s four years younger than I am, so don’t worry about me.’ ‘You don’t need to rush home anymore. I haven’t finished watching the sitcoms you don’t find funny.’ ‘Now’s your last chance to get knocked up before menopause. Pull your IUD.’
I don’t know if there’s another woman in the world who can play it so cool and unassuming. Or, let’s be honest, who can put up with me.
I take the kids to river again. This is getting to be routine, like walking the camel.
Today is good.
Sunday and Monday, November 20 and 21, 2016
I AM SO HAPPY!
Everywhere I look, I see Danae. Several times, somebody walks in, and I’m so sure it’s her, only to turn and see it’s somebody else. Any other day, I’d be mad or sad about it. But not today. She’s on her way home.
No diagnosis. No cause. No treatment. No prognosis. No problem. She’s alive and she’s coming home.
I drive up early to Kelo to meet her, all three kids in tow. I get gas. I refill the hemorrhaging brake fluid. I’m still early. Nothing can get me down.
The bus comes. She gets off.
My life was on pause for the last two weeks. She was gone. I didn’t live.
She’s back. Inhale. Exhale. My heart beats again. I smile again.