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sKePTiKal:
Hi guys, me again. I hope you're all doing as good as can be expected, these days.

What brings me back, is that my hubs has been acting "weird" all summer - you know, the guy I lean on a lot to be the other half of my brain - and well, last week he endured 4 days of pure hell, because I wouldn't take no for an answer about him going to a doc and find out what was wrong. Getting him to cooperate with that, took MONTHS, and finally I used woman's oldest persuader -- tears. Not that it was on purpose, intentional or manipulative. I just sprung a leak.

He has COPD so bad, that the surgeon will NOT operate to remove a mass in the upper right quadrant of the right lung. He's had every cancer test known to mankind, but the "tell" was an exploratory scope and internal look at the lymph nodes. She came right out while he was coming to, and said that it was too risky to schedule the surgery until - if - he could increase lung function from 25% to 50%. He was high risk for respiratory failure.

The good news, is that the mass isn't growing and that while it's touching the ribs - and causing some pain - it hasn't really spread anywhere else. He is in really good health (according to all their measurements) otherwise. COPD is the current problem to deal with. I start with all the bureaucracy this morning and back to being a road warrior getting him where he needs to be seen, etc today. They sent him home to find out if he is just giving up and wishing to die at home... OR, if he's going to participate in his treatment and work at it.

I've been out & about online and acquired a group of homesteader friends. One is a retired military physician. He said something that I didn't understand at first; then saw the lightbulb go on; and now really concerns me. It's not a topic for a practical, activity & skill based discussion board. Doc said that hubs was trying to shield me from the truth of his condition; protect my feelings. Since then, I've just been watching... and have also seen there's a lot of projecting coming from him. Before the inescapable truth was presented to us, there were other things too. Big time denial - and even plain, pure neuro disturbances. Things like, he kept telling the doctor he'd only had symptoms for a month - right in front of me! I'd correct that statement, and he'd be angry - like a little boy desperately trying not to get caught in a lie because he knew the punishment would follow swiftly.

I am a tad out of practice with the kind of work we do here. Imagine it'll come back to me really quick - LOL. But, the kids are swarming to help us, hubs' brother is indefinitely staying with us - and he's also a good person to bounce things off of and knows hubs from a completely different angle (he noticed the same neuro thing, for instance)... and we have friends here, too, in real life. I'm not really alone - which is what it feels like; I'm more able to ask for help than before - which is why hubs' bro is here; and I know I must let off the pressure that builds up emotionally and feels just like steam in a pressure cooker. One way or another...

So, as time goes on and I post more, y'all feel free to jump in and tell me what I'm not seeing (usually right in front of my face)... tell me where I can change and adapt some, to make things easier here, etc. Hubs D - the flight nurse - put a suggestion right out in the air for me that I hadn't thought of. That perhaps I need to hire a caregiver, to separate "wife" from "caregiver" - for both of us. I thought it was a very helpful idea. There's a bit of hostility and taking things personally, old grievances and a little "I told ya so" from time to time. Last night there was a misunderstanding about whether windows were still open; and he said: so that means I'm stupid, right?

Which I hadn't implied AT ALL; I had even just said: I just forgot to tell you that I already closed them.

Writing that bit down, I'm looking at it, and just..... WOW. I never would've expected this from him. After 15 years of co-existing relatively peacefully.

I am very tired. Eating only in between times, so that I could try to be around when the doc "magically" arrived with information. Driving 90 miles. Tense, wired, worried, not getting enough sleep -- and my whole sensory, cognitive function is messed up. Physically clumsy, doing really dumb things. I have double wall ovens. Making lamb last night - so, I sear it at 500 for 15 minutes. Have to turn oven off, to reset it for 350... but I forgot to check which oven I turned on. Then, saw the open can of peaches I left out, getting him an afternoon snack. And there's more; some of it spectacularly comical.

Meh:
Hi :)

sKePTiKal:
Hi Garbanzo! How goes it? I remember that you were on an amazing and interesting journey through "inner space". Is that getting any more cozy yet?

TT, my friend! This particular plot twist in my story was NOT planned or expected. It's been like a roller coaster. Of course he feels better being home and not being a "science experiment" as he put it. But he's trying to quit smoking, readjust his sleep to something not institutionally CYA for vitals every hour, and be able to swallow food. He had every test known to mankind. The last was minor exploratory surgery, which required a breathing/scope tube down his throat.

Boundaries... boundaries... boundaries.

I had to violate a big one to finally get him to see a doc and start finding out just what was wrong. There was a lot of male ego and "it's only a flesh wound" type of denial going on. So my verbal assault escalated into things like: if I can't wake you up the next time I come into the room - who should I call? An ambulance or the morgue? And, if dying on me is your plan to leave me - you picked a shitty way to do that. (Still have some unresolved crap from my Dad...) It was Monday night, when I was trying to massage his back to help ease the pain that finally the emotional pressure got to be too much and the eyes started leaking... and then it was a torrent... and then he agreed to start with urgent care the next day. (Yeah. Urgent care.)

He's become extremely passive. That concerned me more than anything - and leaves a path for me to take over. So of course, all the agony he was put through last week is my "fault". He's only half serious - but yes, part of it is serious, too. He would rather languish and slowly fade away. He absolutely LOVES being doted on, the waiting on him hand & foot and the attention. God forbid there is essential work to be done around here, and I'm gone longer than he thinks is necessary. He came looking for me yesterday. He is becoming more engaged and I told him the key to fighting the nicotine craving is to keep his mind active & focused on something else. If we can get him through another week, he'll have made it straight through cold turkey.

So the boundaries are ever-shifting. All the way from help me, help me ........ to mind your own business, lady. Someone (medical friend) tried to drill it into my head, that because I'm his wife - I have a RIGHT to insist that he get care; that he take his meds on time; that he not overdo it and starts to participate in his own survival. That's kind of a foreign concept to me. Don't we each have to decide and choose that for ourselves? I don't know, now. Looking at it again.

Then, with the kids - and trying to manage my own level of "overwhelm" - I finally read loud & clear from my D that the kids have their own feelings about hubs and me and all of this. She kinda has the "voice of command" sometimes. I dunno where she got that - LOL. It is abundantly clear that hubs wasn't thinking about the feelings of all the people who care about him. I relate to the fact that when you're sick - you're very much the center of the universe and priority #1. I'm not sure that qualifies under the definition of "selfish" or "self-centered" though. It's more like a negotiation with the various parts of ourselves and trying for a peace treaty with the body.

ETA: And yes, part of the kid's message is directed at ME, too. I can't take all this on myself without asking for help when I need it, either. I needed the reminding, about that.

HVAC service guy is here this morning. Hubs insisted on going downstairs to keep an eye on him - and probably have someone to talk to who doesn't know he's ill. Then, there's the male ego thing. "Don't count me out just yet - even if I should be eating, resting & taking my meds - I want to do this." OY. Minefields and tightropes again.

And just for fun - we're watching for another tropical storm development. That makes driving so much fun; can't see the lane markers on the road even in the daytime. This is late in the season for this, but I kind of expected it to pan out this way. Superstorm Sandy was Halloween weekend. What the heck; the storm kinda matches my emotional swings. I am back to morning crying though. I've been sleeping alone most nights for a few months now, so that waking time (down to about 1/2 hr these days), is my time to recognize and release the emotional pressure.

Dr. Richard Grossman:
Hi PR,

I just wanted to let you know that I’m reading your posts.  It’s so hard when a spouse is seriously ill:  Life turns upside down.  I know from when Hildy (my wife) was suddenly diagnosed with lung cancer.  All we can do is our best, and try to let others around us help in ways that we are not used to.  Take care and keep posting…

Richard

sKePTiKal:
Thanks, Dr. G -- that's good advice about letting people help. I seem to be buried in offers, too. What I've realized is that those people have intimate relationships and care about hubs, and letting them help, is how they are able to share that. It is a quick antidote to feeling overwhelmed and "all alone" too. I don't need to gatekeep those people away from him or me - when it frees up time for us to just be together and use that to nurture a recovery... or for him to finally say what it is he thinks he needs... and me to respond.

A doc friend pointed out that his behavior, kinda sounds like hubs was protecting my feelings by pretending there wasn't anything wrong with him. (That's only a small of part of it; but one I would've missed completely.)

Somewhere there's a balance for me - between feeling like I need to "entertain" people who are here, helping; and taking care of their needs too... and letting them take of me, too. LOL. Same as it ever was.

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