This is a difficult situation, literally nothing else could be more important to you, to everyone else involved it is ho hum, another day another dollar. It is like you like life or death need to get your go to the DMV to get your boat registration renewed and DMV gonna DMV.

And it's not cancer, or any other mass. Not sure what it is but at least they now know it is not several terrible things.

Holliday,

Well, I think that counts for some sort of good news at least. MD Anderson docs are really elite, so know that even when it's a pain in the ass to deal with, you're getting some great docs looking at stuff. Hoping you get some big time good news and progress soon.

Thanks for the update. Hopefully you get what you want out of them.

Changing is certainly an option, but I would be wary if your reasoning for changing is because you're looking for someone who tells you what you want to hear as opposed to someone whose attentiveness is more in line with your expectations.

This is definitely good news, basically taking away the feeling of terror, which is nice. Ignore the changing doctors talk, at least the primary. I can get a bit mercurial at elevated stress levels. We like the primary. This **** is just complicated and we're not her only patient and this is not her specialty. Right now we have some odd alternating sets of symptoms and need to figure out where they are coming from. Probably stupidly, I took the WebMD/drugs.com plunge last night and feel confident in my diagnosis of either Malaria/ the Plague or a wacky interaction causing her bone marrow to attack her own red blood cells. That'll teach the doctors to leave me hanging!

At some point I will need to collect my thoughts and seriously consider the potential benefits of relocating to Houston. Not as a slight to the current doctor, just being pragmatic. Tbh, I'm not even sure I remember what collecting my thoughts feels like.

Not sure where to start for an update, so will just make it a quick brain dump:

* Having a **** sandwich
* Moved closer to office; found nice place two blocks away.
* Nothing to my diagnosis; took doctor's office a week to get us the results, "Since it was nothing bad." rather insanely ignoring the *process of elimination* thing going on here.
* Wife has vertigo, current #1 suspect is anti-seizure med.
* MD Anderson Doc recommended we get a local epileptologist, as they were unable to respond adequately without seeing her in person regularly.
* Amazingly, there is one here; doing medication switch gradually. He has concern that significant of her new symptoms may be caused by sudden tumor changes (but obv not sure). Wife did not seem to catch that tidbit in the appointment...I have decided to commit error of omission and not drive that point home. We are 6 weeks away from next MRI/Houston visit.
* Holliday hobbying to build new furniture for house. Wife was opposed to the idea initially, but has liked what I've done so far and saw how the pricetags added up for her "wish list". No workshop space here, so I'm gonna' have to get creative and "Jimmy-jam" a lot of things. Lost most of my budget on a Georgia game, so most stuff at first is going to be painted pine. While out of my comfort zone, have decided to make the couches and upholstered chairs as well. Work is approximately 90% hand tools, making it tolerable to the new neighborhood at all hours, and basically will be my workout Overall I expect to spend about $2k and 100 hours to make furniture that will last instead of buying $10k worth of crap. Sort of a kink in my SUP build plans, however.
* The sandbag training on wife's weight has turned out to be a stroke of genius. Between the dizziness, lightheadedness, and general lethargy and weakness, carrying her has come up a lot recently.

Most everything similar but worse recently. Follow-up with epileptologist today to re-think meds and worsening symptoms. Solo walking and pretty much any exercise is out of the question for now. Dog had kidney failure, wasn't expected to make it, did, and is now home but struggling to eat and stay awake or move much. Wife continues to fret over him. Her general demeanor pretty consistently morbid for the time being, and constantly pining for the things she "used to be able to do".

****'s gotta change soon.

Best wishes

Glglgl.

Possibly the most depressing waiting room I've ever seen. I can understand about 25% of what she is saying at this point. Wish I was a bit better at faking that sort of thing.

H,

Rooting for you.

Thanks everybody.

Basically big back-off on meds and...a week of brain monitoring in a lab? Doc wants to be sure we're looking at seizures before trying any other seizure medication routes. Seems legit.

Resolved to get her some exercise today somehow. Possibly suspending exercise bike upside down from ceiling so she can lie down and pedal. Just something for a little pep, you know.

Man that sucks so bad.

Yeah, it's the fatigue more than anything. Got in 15 minutes on the bike with me holding her, then 15 of floor exercise. She was quite dismayed by the difficulty, and angry with me for potentially not doing the same level of activity tomorrow; "But we will do it tomorrow." "That's what you say."

Anyway, hopefully we can start to get a bit of a mood elevation going with some exercise and less meds. So far the only described effect is "more spinny in the dizziness" but it's supposed to have a long taper.

Dog is not eating (voluntarily) and is pretty stubborn about not taking his new pills. Pretty sure he has a pocket in his tongue because damned if I know where the **** it is before he spits it out. He's also wobbly and unstable walking...not entirely certain if that's real or he's immitating her. Wife thinks they're like ET and that kid.

I do, however, feel significantly better today just by virtue of it not having been a noticeably worse day than yesterday.

Overload and substantial sleep deprivation. Nothing is going right at all. Finally had a good vet visit with Hollidog, gleefully fistpump, get home and find a "lump" he's had on his chest for several years (he's too old for surgery for something like that) has ruptured on the ride and...gooey and squidlike results. This was midnight (evening vet) and he sort of freaked until 3:00. I regret not checking my car for whatever that stuff was. Has now baked into the carpeting and left an altogether undesireable smell. Reasonably impressed I can still distinguish unpleasant smells, actually.

Had a bad feeling as soon as I made mild celebratory gesture.

Supposed to go back for vet to have a look tonight. God forbid the 3 days wife is in a lab for brainwave observation should result in any "me" or "sleep" time. Also having to near-constantly talk wife out of leaving clinic, and remind her that she tends to hear the opposite of whatever a doctor says...so don't ****ing freak out about it, ffs!

If I didn't have such an enourmous ego and self-regard, I'm not sure I could take much more of this.

Today is going to suck. They are going to tell us these symptoms are permanent brain damage, essentially. I expect she'll remember me explaining that she'd misunderstood when she heard that yesterday. "Great, I have permanent brain damage and my husband is the idiot."

Sometimes there's nothing for it but to go out and take that punch to the face.

Ouch man, that really sucks

This sucks dude; hopefully the news today isn't as bad as you fear.

:fingerscrossed:

I'd like to thank the mayor of Toronto for the comic relief. Helpful.

Didn't go as badly as expected, if only because of overwhelming levels of vagueness. Also appeared momentarily confused about which patient my wife was. Not helpful.

Couldn't really see a practical payoff in going full blown over something like those in this spot, as tempting as it was. Now just really altogether confused.

Holliday,

"Also appeared momentarily confused about which patient my wife was."

Excellent.

Morbid braindump:

The last couple of days feel like rock bottom. Had about a week where we were getting some optimism and big Mo, then we started to get some more falling and emergencies. She thinks she's getting weaker and less coordinated all over, and observation seems to back that up. Now her speech and swallowing ability are alternating between difficult and non-functional. Actually, she cannot tell when her speech is giberish because it all sounds the same to her. It's up to me to tell her, and get her to repeat. Unfortunately, after it often takes several minutes to establish a few sentences, it turns out what she was trying to say was something stupid or horrible or annoying. Holliday's not handling this well, especially when coupled with her morbidly down demeanor complete with the posture of a half-deflated snowman balloon. She wants to help and do things and keep moving, but increasingly just makes things worse by dropping stuff, falling, etc. I think it actually is more important that she keep trying than to actually be productive--but, you know, some stuff does need to get done, too. Whatever I'm doing I have to be ready to drop it and run, literally, when I hear a thud or yell. Sometimes I think I'm being paranoid or going crazy because I faintly think I hear her calling for me. Time after time, nope not crazy; She had somehow fallen and was stuck face down on the floor only able to speak slightly louder than a whisper calling for help. Sometimes it was just my imagination. Friday night the dog managed to push some boxes out of the way to get into the blocked off living room which I've set up as a painting station, stepped into some black paint and tracked it around the house and then started getting freaked out (which may have been related to licking the paint off his paw). I was out at HW store and wife was crushed that she couldn't take care of him. She called me with the message, "Emergen--HELP! HELP!"...and was unable to say any more. In such a situation, the anxiety meds, they do nothing. Thankfully this town doesn't have cameras at the stoplights, but my personalized license plate ("G0FUSLF") does mean I have to stay alert for drivers who feel they have a score to settle with me after things like that. I took care of the dog, but not without a rather unseemly blowup an hour in when the dog's freaking and the wife started to join in and it was apparant the evening would involve doing nothing but incredibly stilted converssation about random new things wife has creatively come up with to worry about;

scannnersheadexplode.gif

Dog was fine after a couple of hours. Wife had a nasty fall that evening which I could only watch as I held the dog, and another the next morning which I heard start and ran just in time to see her falling back and smacking her head against a window on the way down. Probably would have broken the glass had she not hit right along one of those dividers between the panes. She thinks she's fine from the fall and refuses to use a wheelchair, and I am left with a faint and buzzing sensation for several hours afterward. Anyway the whole day just went on like this, until an extended sequence of nonsensical speech, choking on soup, and drooling unawares just became overwhelming. Cried uncontrollably for about an hour while wife tried to talk to me. I couldn't understand a word, not a word, at the time, which did not help to stop the crying.

It's just too much and too brutal and cruel. She's worked so hard was never happy with her physical condition over the last year, but now she's fondly looking back on those times and wishing she was that well again. I am struck by the thought that she could be dying here, along with my geriatric dog with kidney failure, and even the younger dog is pretty old now. They could all be gone soon and I'll be all alone, wondering what happened to my beautiful loving family. There's nothing I can do to help except try to be supportive and positive, yet I just seem to get angry and frustrated.

But anyway that was yesterday. Today I have to get moving again. Woke up with a headache that I'm pretty sure would kill 10 ordinary men, which I'll have to remember as a very good reason to not go crying my head off right before bed again. She's been exercising 2x per day on the bike, electrolysis for a couple of days, and we've been doing 'spotted' walking around the new property. Today we want to work on "squats" using a chair since she's been more catapulting herself into seats rather than gently lowering herself.

Sending you and your family best wishes.

This is an incredibly touching story.

I wish I had some wisdom or words but I don't. I do know that whatever happens, a man like you will never be alone.

Wishing you the best.