PR's new saga...

[Meh]

Whatever you can do to be Amber, rather than Superwife, will be good for both
your hearts, imo.
love to you
Hops

^^Sounds wise

[sKePTiKal]

LOL.... superwife... LOL LOL ROTFL

Yeah, maybe I used to try really hard to do that. And there are still echoes. And I can laugh about the disastrous results (no animals or pots & pans were injured in those attempts) these days and just forget about it. I have a crew of guys to handle the outdoor stuff; trustworthy - they are retired cops or fire chiefs who started service businesses. Long time locals. My pool girl this year, asked if I needed housecleaning help... and I can reach her through the pool company; owner is my neighbor.

I guess, part of my panic here... is that hubs is always the first person I looked to when I needed a hug or help to think something through... or to actually do, what I only thought about doing for myself, because I didn't feel like I deserved it. And I don't WANT to make him feel guilty; I want him to want to get well and live. To the point, where I googled "will to live"... and after looking at the schlock on the first page of results, realize I'd better look somewhere else.

Penny: yes, I need the emotional support of people outside this little pod of two peas. Just normal human stuff - hear about what's going on in their lives, etc. Their frustrations, lives etc. One board of online friends was chatting last night, and 3 of us were talking about caregiving, our "patients" and relationships, etc. That may be one source. In real life, Hol & Matt are really good and have the connectedness ESP to know when to show up. FUNNY: the first night, after I'd come home I called Hol back and we were talking about what needed to be done at the cabin Mike & I just bought. for the winter. She & Matt do handyman stuff when they're making art... so I mentioned about how I'd left zud sprinkled in the toilets to try to counter the staining effect of the iron in the water. Holly remembers that domestic issue from living with me and Ex#2, before she left to start her own life. Told her I had visions of the cleanser completely dissolving the porcelain and the whole toilet... making it disappear. She had exactly the same neurotic vision when I mentioned cleaning that out. And we found it hysterically funny... Matt didn't get it at all. In the greater scheme of things I'm dealing with, who cares about a damn toilet?? But, the programming is there and resists being manually over-ridden.

Another funny, but with an edge to it: We were waiting on the new primary care doc yesterday in his office and my phone rang; first of all, most people just text me... and I saw the area code was MI... I always answer in case it's a business-related question. NOPE, it was my MOTHER - wanting to know if the other D in SC was alright with the flooding. Two months, I haven't heard from her -- and she picks that moment. Asked her if I could call her back... sigh. I haven't yet. She wanted complete details of why we were there and what's wrong with Mike... and ya know what? Somewhere in there, I MATTER TOO DAMN IT.

As to my struggles with bureaucracy, a few years back we did all the will & estate stuff. Yes, I am hubs' POA and Health POA. These doctors -- and their ministrations -- took place on an emergency basis and there was no time (and I was not present) to carefully check those boxes. This week, we are doing all the office visits and rectifying that. (I hear ya, TT -- yes, they are the same people. I make the distinction though between traditional liberals, who are really nice people and whatever term I've made up this week, for those who are trying to break what was working, and reinvent the wheel on the basis of a theory that square ones will save the planet.)

I slept in this morning. As in 10 hours of sleep, slept in. My brain needs this kind of downtime every few days right now. I don't worry about it. I'm also up and more active than I've been in awhile, too. Not over-doing it; little bites. Hubs got off the couch, went out to the kitchen and fixed himself some instant breakfast and grabbed a cup of cereal too. Dr. Zhou said yesterday that he should put any and all food regardless of nutrition into his mouth and swallow -- no matter how it tastes -- AND start getting up and moving around. M has lost 20 lbs in the last month - EVEN while not smoking for the last 2 weeks. He didn't really have it to lose in the first place. When he tried to change clothes yesterday, I think he realized that if he can't even do that without assistance - or get to the bathroom in time (it sounds like he's losing the sensation connection to the brain-prompt: "I need to go to the bathroom", before he REALLY needs to go) well then, it's fish or cut bait time. When I told him, I'm going to start pushing him on certain things... he agreed to it. I'll make sure he meant it before following through on it.

With Michael, it's always been the journey that's important - not the destination. (And he really shoulda trademarked that... since he came up with so long ago...)

[Hopalong]

Jeez. I'm a liberal.

Anyway PR, I hear you. It's hard hard hard to have to stay so focused on his medical and other needs when inside you is the scream, but I need YOU not to be sick, not to leave me.

I'm so very sorry. It's like you can't tend to your own impending losses while you're keeping a finger in the dike. Exhausting in so many profound ways.

You're going to be okay. One day and one decision and one event at a time.

I'm really glad you have so many people in your life who care and who are there for you. And you've really done so many wise things in preparation. GOOD for you for getting the medical POA etc taken care of. That should help, I hope.

(I stood in a silent candle-lighting line at church Sunday and the man in front asked me how I was doing. I said okay--it was my D's bday which is kind of hard, but I'd done an altar flower display to find some joy in it, and it did help). So I asked him the same and he said, "Not good. My wife is dying," and the man in front of him and I just kind of held on to him. Later I handed him a card with my numbers and a note: "I can lend an ear. Any time.")

We need people to lend an ear. Every one of us has these times and the long lonely walks. What a difference it might make when someone doesn't turn away.

love,
Hops

[lighter]

Oh Amber......

so frustrating not to have access to information for your dh M.

My mom put all her children on her list to speak to doctors, and it helped everyone with everything, IME.

We could phone up with questions and talk to nurses about test results and have conference calls with the doc, or just have him answer questions as they came up.  Mom could more eaasily remain focused on being positive....  not that she always could, but she was amazing in her ability to persevere and crack on.

I think your M's motto....." it's about the journey," is very spot on.  The choice to live every day we have left, or die a bit every day, is real, IME..... for everyone.  It's very acute when serious illness is involved, IME.

We ask our loved ones what they want to do.... what do they want for that day?  That meal?  Treatment?  Help making peace?  Help pretending all is well? 

My sweet B, in the end of his battle with colon cancer with mets to the liver, wished he'd spent his last months floating on a sail boat drinking margaritas, and I wish he had too....
now.  (My mom was asking for chemo up to the end, when she was too ill to endure it, btw..... she did well with it, and B didn't.)

At the time I wanted him to live so I pushed every intervention, and so did his children........  I had no perspective or experience to help me understand what was happening to all of us.  I didn't ask him what he wanted, and I'm not sure I could have heard the answer he gave in the end..... not at that time.

In the end, I think we end up wishing we'd given them what they truly wanted, and sometimes they don't know, and/or we can't hear them, IME. 

The food was a trauma for us too.  Chemo changes taste buds, and stomach problems and pressure from fluid in the stomach cavity couldn't be drained easily then, like it could with my mother.  I think that extended her health and life.  It's a good thing, if you need to think about that at some point. 

I also found that giving fluids helped my mom stay perky, and alert..... she was herself, and present in the moment.  If she didn't get fluids when she needed them, it was... trauma.  More for us, but she had so much to do before she was done, and the fluids kept her life as normal as was possible when she was overcoming a set back, like c diff, or just struggling.... in the end for sure it gave her more time, and we had to fight for that time, bc the first Hospice wasn't a good service.  Their choices weren't ours, and so we found another Hospice, but Lord...... very hard to always know exactly what to do.   I think the combination of fluids, along with draining stomach fluids, helped her body handle the toxins. 

(((((((Amber and family)))))))))

[Meh]

LOL Toilet zuds.

[sKePTiKal]

Oh Hopsy - you know I love you dearly. Politics does NOT touch and color everything about life for me, and I'm resisting the current "fashion" to make it so. It's the "I know best for you & you & you - and one size fits all - and you will do this because I'm smarter than all the rest of you" political, from the top down, attitude - instead of the freedom to live & let live and love each other BECAUSE we're different that gets my hackles up. Sort of Dr. King's comments about judging the character, not the appearance of a person. I grew up hoping that small gem of wisdom would help people help each other -- instead of tear them down. (And it still DOES work, IMO.)

LOL... I did end up talking to my mother. For the first time ever, I was chided for not calling her back - but it was late when we got home, so I had a built in excuse. She wasn't really interested in how I was doing - or Michael either really; just nosy... and so I changed the subject and asked her the question I've been rolling around in my head "What is the will to live and where does it come from?" She had to think a minute... hemmed & hawed... then finally said she lived to irritate all the people she hated. I heard, yet again, the switch flip from Dr. Jekyll to Mr. Hyde in her voice, too. WOW, is all I can think about that. What a waste. I sure wouldn't like myself much if that was my motivation... but to each his/her own.

Hubs seems to be turning a page on the lethargy and listlessness. Getting more engaged; eating whether he's hungry or if it tastes right or not -- but still not very much. There are throat issues going on, that after 2 weeks, I don't believe should still be chalked up to not smoking... or the results of the tube down his throat for the exploratory. Something else happening that we need to insist is checked out tomorrow. Swallowing is kinda essential to eating. Instead of jumping up and getting him a fresh drink, or snack - I'm insisting he does it to keep his circulation moving... to help him keep the balance and strength in his back & legs that he retains.

And I'm dreaming... sheesh! First, I dreamt I got a piece of mail for my dad's trust; it's been closed, done & over with for a couple of years. Then, I dreamed I was trying to run & hide from someone trying to shoot me... I would even change seats every so often in a restaurant - and my doing so, meant that someone else was shot... because there really WAS someone chasing me to kill me, for some reason. Trying to shake that one off, maybe another cup of coffee...

Thanks for your experiences guys. I am AFRAID of doing the walk alone... but I have done this before, and I am more competent at it than I truly believe. I truly believe that I am "too emotional", or "not consistent enough", or not able to set aside my emotions at the time I need to be totally rational... because that's what I've been told about myself; even though there is plenty of historical evidence to the contrary... and a whole group of people who believe something different about me. That's something I'm still trying to "let go"... because my brain says: it's not true... even tho' my emotions have been conditioned/programmed - to feel that way. Ain't perfect; but I've always been "good enough".

[lighter]

sKeP:

I'm not glad you've done this dance before, but it's helpful, IME.
As tt said.... it would be good to see around corners in these situations.  I think experience gives us some ability to at least know some of the corners we're about to round, and that can mean a lot.

Amber, Your last paragraph resonated deeply with me.

The spaces between actions is rendered more sad, IME.  That space..... with so many chattering opinions around us, isn't comfortable.  It's lonely.  More so than it should be.

The Amazon bonfire is stacked, and waiting for your signal.

::sending prayers for M's restored immune system and healing::

Lighter
 

[Hopalong]

Hell, yeah, you're good enough.

(((((((((((((((((((((PR))))))))))))))))))))))

love
Hops

[lighter]

What Hops said, and.....

you're not alone.  We'll be here (((PR))).

Lighter

[sKePTiKal]

Thanks, ladies.

It's..... interesting here. He is beginning to come "back" from his ruminations. And without "so many words", I know that we're both afraid of the same thing - going through this alone. So, well... we're not. He's going to have to lean on me and I'm gonna have to be there. And vice versa. His humor - as dark, sarcastic, and sick as mine - is back. And it's all starting to make sense to him - he doesn't have to pretend "it's only a flesh wound" - to protect me from the truth; I already know. And I haven't run shrieking away or looked to trade him in on a new model.

Only short time this morning, we have to be ready to hit the road in a couple of hours. There will plenty updates later. Our new friends here are rallying too. And his family as well. I'll just blurt this and explain later - but his D and son in law have separated and are going through a divorce. Both of them called yesterday, because SIL is a really good chap - just your average all-american country boy who lives to hunt and is an excellent father and the D was never able to explain what was wrong or why it came to this for her and I didn't feel I had standing to pin her down. So both are still welcome here; on their own or with the grandbabies. M talked to TJ a long time about our cabin in the Nat'l Forest and being able to sight deer from the front porch. I really think it helps him, talking to the kids. Yesterday was the first day his voice had improved, too.

Y'all know I'll be back later to blab for hours, after the "news" -- which I hope is detailed and explicit. Whatever kind it is.

[lighter]

That your h's humor returned is BIG.... such a relief.

I understand the urge to protect loved ones, and maybe honestly not know what to do instead.

(((((Amber)))))

I'm glad you're in a better space.

::nodding::

hhaw

[Hopalong]

Car rides in fear of or in response to scary news are very hard.

I hope y'all hold hands on the way home.

But drive carefully because you have a bunch of Amazons in the back seat (plus a Mud creature probably) and we get very noisy. I believe we are singing at the moment, top volume: https://www.youtube.com/watch?v=ybXrrTX3LuI

It was very nice of you to install a disco light to enhance our performance...

One mile at a time.....(((((((((((((Amber))))))))))))))))

xo
Hops

[Meh]

Reading it.

[sKePTiKal]

LOL... so THAT's what that noise was... 

Well yesterday was the other side of the roller coaster hill. Again. I don't get sea sick, but if I did, I'd be hurling. First, I got chewed out and told I knew what I said I didn't know, by the defensively abrasive oncologist. But I do think he heard me, that most of my information came directly from M, who was extremely out of it... and that I had not SEEN the hospital notes and that the discharge papers contained extremely little that made any sense to me -- including what appts to make, which ones WERE MADE, what else needed to be scheduled... etc. Apparently there is a communication breakdown between the specialists. I am told this and guarding territory are not uncommon. The oncologist is a bully; but direct. I didn't back down from him and kept asking for more specific information - so I could figure out what I didn't KNOW that I didn't know. I think we came to a truce at the end of that first encounter. And unlike him, I'm more than able to admit when I'm wrong.

The pulmonologist was a bit easier - but had to be brought around to the fact that all this stuff is brand new to us and to bear with me, as I processed information slower than he could provide it and please - repeat that again? The experience for me, is a flash flood of data, information, terms and definitions -- a lot of words to my ears -- with very little meaning attached to them. I literally had to leave the building at one point yesterday, because the claustrophobia panic was starting to set in and it was ME that wasn't able to breathe. Noise, lights, motion and all those words thrown at me... I did OK, though. I did realize that if I didn't do something to give myself a break from all that, I was going to be the one passed out on the floor.

Hubs failed his breathing function test and could not walk 6 minutes, even with 3 liters of oxygen. He had started turning blue and his heart rate was out the roof. Today, someone's calling to schedule a drop off of oxygen and a lesson in safety & use. I've been talking to my retired GP doc friend... and have confused the crap out of him because I was so tired and confused myself, that stuff just came out in a jumble. He says I never told him about the COPD - maybe I didn't; I can't remember.

From my research, hubs has stage 4 COPD. Unlike cancer, that's not a death is imminent category. It just means that without a lot of breathing assistance, the patient can't go about life functions much less get any exercise. The impression I have now - since yesterday - is that none of the docs are all that concerned about the cancer at the moment. It's not growing - so the focus is on the COPD. He'll have 2 more tests - a brain mri, to check for mestastes (sp?) and a full body PET scan. The pulmonologist said surgery is completely off the table at this point. And without saying as much, I got the impression that this second breathing function test was worse than the first, when hubs was in pain the day after the lung biopsy. M said it felt better to him - but he's been on the inhalers for 10 days and isn't in as much pain anymore.

I was sorting out papers last night and looked at the discharge notes again. DING... hubs had said that the docs "were worried" about secondary pneumonia and so they were pumping him full of antibiotics. That wasn't quite accurate, although I accepted it at the time. The fact is, his fever was probably attributable to a case of pneumonia that they were TREATING. The doc friend says be wary of the 2 lbs hubs has gained in 2 days... it could be water weight, and could be onset of congestive heart failure - especially with the exertion of the 3 hours drive, walking through parking lots & buildings... and the tests. DUH; I did not think about that. A walk of any distance feels great to my old butt & hips & head... but I had to wait for hubs to catch up.

NO ONE except my doc friend is telling me "this is where you are" in this strange landscape. If not for that, I'd be burning up a lot more energy trying figure it out myself. M and I are starting to get to the planning stage of figuring things out here, too. We're going to have to make him more comfortable -- without isolating him. My R/L friend Debbie suggested a power recliner... and they sell them locally. Might make a run out this weekend to check them out.

[Meh]

There is an issue with patients being overwhelmed and a disorganization and communication breakdown between the specialists. Its a real thing.

In the past I worked on a cancer screening program group and my manager was creating a system that basically gave cancer patients a binder and a "program" and a plan. Not all health facilities are quite that pro-active and organized though.  

It's like you should be able to take everything and go to a nurse or back to a regular family doctor and just get some sort of de-briefing in simple terms and just tell them how you feel.

I had minor skin cancer and re-constructive surgery and even that was enough to freak me out (I'm a wimp). All of a sudden all this stuff is happening and it feels like one doesn't have a lot of control over it. Biopsies are invasive and all of a sudden they are just cutting out chunks of flesh. Its scary. Its foreign.

Somehow healthcare is a process though and at some point you just have to hope you are going to come out the other side of the system so that life can get back to normal again.

I wish I had something more helpful to say to you. A relative of mine was treated for cancer and due to they had great insurance they had their pick of any facility. They went out-of-state to get treatment and it made a big difference for them personally. Having docs that you trust and you feel are helping you is important it makes it a less stressful experience.

Anyhow. I am reading your posts.

  I hope it gets better and that both of you are finding some kind of good distractions somehow.