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sKePTiKal:
DEB!! You're still here!! I am amazed. Yes, we are like you & your friends. The docs and those with strict behavioral conditioning would be absolutely horrified at some of the things we say and do - to get through things with "us" intact.   8)   I rather enjoy their shock, really. Told y'all I'm going to be the one wearing purple and saying the hell with it, as an old woman. I'm still rehersing for that role, however.

Yesterday's "enlightenment" about this chapter of the saga, was that the reason hubs' lips are chapped, his mouth always dry and had pain on swallowing was a lovely little side effect of the inhalers -- thrush; a yeast infection really. I went out to pharmacy with a list of OTC remedies that might help... and when I realized one was just for GERD, asked the pharmacist. There isn't anything available, without a Rx. So: bought some yogurt (no sugar)... a couple of avocados (chock full of good fat & green)... and called the pulmonologist's answering service to explain the issue and ask him to call in an Rx. That was around noon. Of course, I needed to stop and pump up a tire before I headed out. We've bought a number of tools since moving here, to simplify things like this - but every time I have an "urgent mission" it seems life is throwing out legos under my bare feet... every step of the way. I still have not heard back from this doc.

I shouldn't have to explain to this doc how urgently hubs needs to be able to eat, without pain or gasping for air. He's lost 6 more pounds since the appts last week, for a grand total of almost 30 lbs in about 6-8 weeks. He needs energy to be able to keep breathing. That puts him lower than my "target" weight and with the extra activity and forced postponing of or skipping meals because of driving to appts... I'm down 10 lbs. Had to buy smaller underwear.  ;)  Our choices this morning, are he can try to ignore the difficulty eating and choke on about everything I give him - including milkshakes & smoothies. Or I can try to find good coconut oil here, and get some more yogurt. Lemon water also seemed to reduce the stuff in his throat; I think I have a spare lemon juice in the pantry. Or we can spend Sunday in the Urgent Care to have them confirm, that yes - it's thrush - and write an Rx that I can fill, hopefully before the pharmacy closes today. Wed & Fri next week we travel again, for appts. And I MUST renew my drivers license and get the car we're driving inspected. Deadlines.

The oncologist was quite unmistakably clear. Right now, cancer isn't what they're worried about. It's the COPD, and how severe it is -- which wasn't truly understood by the pulmonologist, until hubs couldn't finish the 6 minute walk and was turning blue, with a heart rate of 147. There are no cures for COPD; and the best the docs have in the late stages is ameloriation of symptoms. So, hubs is on 24/7 oxygen - but he still refuses to wheel a tank with him to the bathroom (says he has to pee so badly, he can barely get there in time as it is; and when I suggested not waiting that long - he said he doesn't notice he has to, until it's that's bad; his sensory perception of his own physical needs is out of whack, maybe? Maybe that's why he's not really hungry, too?)

So, COPD in the late stages, in combination with this "cahexia" - or wasting syndrome - is really hard for docs to predict how long someone will live with a decent quality of life. Exacerbation - or breathing crises - come up unexpectedly. Not eating, of course, means the body doesn't have enough fuel to expand & contract the lungs. Hubs looks like a concentration camp prisoner; skin and bones.

Now, with the cancer - the mass in his lung isn't growing. Surgery would reduce his lung function even more; and then there are the complications of anasthesia with this stage of COPD. (There are tapes running in my head from the last few years of me saying: you just go do what you can comfortably do now... and tomorrow, do it again - but just one thing, or one 1/2 hr more; that makes you stronger and you can breathe easier, too; it builds up stamina. Hubs thought lifting weights or exercise machines would be the "magic pill"; but you sorta have to use them. Can't just look at them.) Cancer does produce enzymes that contribute to this extreme weight loss, sometimes - but it's not usually associated with lung cancer (in the literature, anyway; my observations are different).

With the extreme weight loss and that impact on all the organs - radiation and chemo don't make sense either. He was supposed to come home & bulk up and eat like no tomorrow, with absolutely no limitations or restrictions on what he could eat -- as long as it had calories in it. So he wanted sugary stuff - which contributes to the yeast infection in his throat; duh - and here we are. It's a complex process with a lot of moving parts. The other thing that the thrush is doing, is making his voice hoarse and softer; maybe you'll recall his mom permanently lost her voice as a result of lung cancer involving the vocal cords. So talking is extremely difficult for him; and he is gasping air after every couple of words.
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OK, that's the layout of the situation. Brain mri was clear and probably won't have PET scan results till next week. But, I really don't expect too much more data to come from that. It's time to get real and talk about where we go from here.

I'm digging out his advance health directive and we're going to double check if his preferences from a few years ago are still the same, now. Maybe need the signed ones, which I think are at the bank. What he decides to do - and allows me to do to try to help him - may not be enough to fend off the inevitable. I'm swallowing that bit of reality now, because it's STILL going to be tough to hear it from some stranger later on. Even if the docs insist on making him try to undergo these treatments for cancer, he can STILL refuse. A miracle could happen and we could get the COPD to stabilize enough that he could put on 10 lbs. It just all depends so much on him and what he wants - and there are still things completely out of our control.

My brain hasn't enough room in it, to think about anything "AFTER"... whenever that might be. But I see that door too.

lighter:
It's not easy to deal with the details of health directives, etc but I think it's necessary.  You have to be brave to look your loved on in the eye and have those discussions.

I'd begin by sharing my own preferences, and hope M simply stated what he wanted without my having to fire questions at him about it.

If he simply doesn't want to talk about those things, that's OK too.  The old directive gives you instructions, and things like funeral arrangements will be up to the survivor and what makes them feel better.  Sometimes I think that's the way it should be anyway.

I hope you guys are doing OK.

Lighter

Hopalong:
Oh, hon.

This sounds so powerfully to me like the right time to engage hospice. I so hope there is hospice in your area.

They send social workers who speak HUMAN, and caring nurses. It's a hard step to accept but what a massive relief once you start with them.

I know it requires docs to give a 6-month prognosis first, at least in my area.

Short of that, something jumped out at me--you described disassociating while listening to the overwhelming volume of medical info. And you're
frustrated with docs in general. Since you can't change them, do you think it would help to ask for an apt (for yourself) with a medical
social worker? You could tell that person about your tendency to disassociate under stress and ask him/her to break it all down for you. Or, if it doesn't make
you feel too vulnerable, you could even have a simple statement to tell docs themselves at the START of any appt, such as: With a huge amount of information
and under stress, I'm aware that I disassociate at moments and may miss something important. Will you break this down for me quite slowly please?

Much compassion to you, and to Hubs.

with love
Hops

sKePTiKal:
Well Hops, that problem was a couple weeks ago. And you know, it's not an "all bad" thing - because as the words are being streamed at me, I'm focusing on the bigger reality beyond the words - the stuff that doesn't go into words so well, but is the important stuff; the touchstones of how we understand and process and move through big changes in our lives. (At least I THINK it was a couple weeks ago; been at this a month now, and I know I'm dealing with some time distortion - it's minor and understandable; hubs still doesn't quite understand what I mean with the words - but I know he's experiencing it.) That stuff is better expressed in pictures for me; words don't always do it justice... and ideally, the pictures evoke emotional recognition and connection.

I've had some time to just sit with him and be here to satisfy the taste cravings he has for different things - like successive "last meal requests" - LOL. Only to see him not be able to swallow it. I've seen his eyes glass over and he not respond to me calling him for a little time - twice - and this last time, his vitals were off the chart. I almost didn't take him to the drs appt, because I didn't think he was gonna make it through the 3 hr commute; then I remembered our hospital would transport him up there anyway. But he did make it.

This doc - the oncologist - is OK. He's moody, I guess and wields his personal defense mechanisms freely, because of the nature of his work. He had an intern come talk to us, and as I had a chance to rattle off my list of "reports" - she mentioned that hubs would go through 6 weeks of radiation/low dose chemo - 5 days a week. First thing outta the old Twiggy mouth, was: I know they do these treatments in the Outer Banks. Is there ANY WAY, we could arrange for that closer to home, since I don't think adding the 3 hr commute would contribute to hubs' recovery or probability of surviving those treatments? And don't you know, the doc has a partner that practices down here? Well, butter my bum and call me a bisquit.

Hubs was horrified that I would even ask such a question; that it wasn't "nice" to question these guys - to ask for what you really need. The doc, to his credit, told hubs we're trying to keep him this side of the dirt - and when I asked doc to tell him to eat for me, too - he did. Guess the doc finally realized that a) I do my homework and don't need someone to lead me around this process by the hand... and b) we're on the same side. Being able to drive less than 1/2 hr to those treatments is HUGE relief, versus 90 minutes each way in city traffic. Plus it's not tourist season here.

The cancer is the LEAST of hubs' problems, btw. As big & scary as that is, it's no longer the certain death sentence it once was. COPD and the complications surrounding that are the bigger issue - the boundaries of the canvas, as it were - and it comes down to basically: BREATHING. We see that doc tomorrow and as I understand it - my list from yesterday SHOULD be addressed by this doc. This is the lethal stuff; the cancer isn't growing and while it's a big tumor, causing pain and other symptoms... the weight loss, the problems with balancing O2, CO2 and CO in the bloodstream, form a negative feedback loop, so that the sum total reality he's facing right now is that he needs to EAT, to have the energy to continue breathing, and to keep the pH balance and oxygen and energy going, to keep his heart going too. One of the inhalers - even though he's followed instructions - has produced a nasty case of thrush as a side effect. So no, hubs can't swallow food well; it DOES get stuck. He doesn't panic, because he can breathe around it.

Everyone suggests the protein shakes and making smoothies - and hubs even bought a nutribullet & cookbooks. Guess what? I make it, he proclaims it doesn't taste good - and it sits. I won't know for awhile; until the thrush clears up anyway, if there's more than this going on with his food "thing". Cahexia is the formal name for a physical condition like COPD/Cancer that causes a person to lose a lot of weight and muscle mass. And just a few ticks over on that measuring stick is anorexia. I'm watching; not going to presume, without evidence. But I know the loss of control of his life bothers him. I won't let him drive. He can barely close the car door, and he fades in/out of awareness. He AIN'T driving. This week, he's had bathroom issues too. Not really the first time, either...

explanation for that, is that when the body has an oxygen "crisis" - all the O2 floods to the brain, lungs & heart and the other organs don't get any; so those signals don't quite get to the brain, alerting to the need to go - or being able to hold it long enough to go. These are part of the signs (for caregivers; yes - I've already been reading hospice info) that the end is approaching. I need to get the pulmonologist's take on this, first... but then, hubs needs to decide if he really WANTS to go through with radiation/chemo - or try to - in light of how the COPD is making it difficult to exist, already. Radiation didn't seem to affect his Mom, one way or another. But she did go downhill rapidly, with the chemo treatment, afterwards. I don't think he understands yet, where he is, in the calendar book of "days of our lives"...

and from what I can deduce from the little he has said and his behavior... he doesn't want to know; at least subconsciously. He says different of course. The reality is, that treating the cancer might be like cosmetic surgery... when the real issue is that he's slowly starving and suffocating from the COPD. And while there are "amelioration" therapies that work well to maintain quality of life in the early stages; there isn't a lot (medically speaking) they can do at this late date. A lung resection would reduce his capacity to breathe even more (which is why cancer surgery is out). It's simply a matter of time and the docs can't reliably predict HOW MUCH time. Or what type of crisis to watch out (so it's watching out for all of them: pneumonia, flu, lung collapse, heart issues, blood chemistry... and of course muscle mass... to power those engines that sustain life).

Congestive Heart Failure tends to be a complication of COPD, and I'm already seeing pre-cursor signs of that. Yes, I'll be asking the doc down here about hospice. Respite care is what MY doctor has ordered - LOL - just for something else to obsess about. Hubs brother offered to come down this weekend and hubs' D, the next weekend. Hol is going to turn the heat on and look around for other "winter-ready" things to take care of at the cabin we bought, just before all this. (He was massively sick the night before I made the offer on the place at his prompting.) It's up in the mountains, and very out of the way. Not really primitive - but the phone company can't tell me when they might install service, and there is zero cell service there. Not taking hubs there till there is a phone.

TT: bless you, hon. I have offers of help coming out my ears... and I hardly know what I can delegate right now, myself. I think when Chris gets here this weekend, I'm going to try to work a half day or so outside. Nothing "hard"... just the normal clean up. You know what's really weird?? Even though I'm essentially cooking for myself now - I'm eating better. Hubs' aversion to vegetables of almost the whole category, meant I had to sneak them or cook them separately for me. I've gotten all the major "have tos" done... and next week, deal with the inspection of the jeep we're using to go "long distance" driving.

sKePTiKal:
Well.

Seems there is a dearth of information on psychological support & treatment of anorexia in terminally ill patients. I am seeing a little of this going on with hubs; while at the same time, being aware of "cahexia" - which is a wasting disease that is biological in nature and poorly understood. It seems to be fairly common in cancer & copd patients. The researchers know that even artificial feeding only seems to increase fat on the body - but not muscle mass. The enzymes from tumors are suspected as being agents in the progression of this "syndrome".

He is dreaming. Unusual for him to remember dreams. Was dreaming he was driving out of a parking garage, going round & round & down... when a wall disappeared and the car itself disappeared. He said last night, that he is still struggling with how FAST this has all happened; he has lost 30 lbs since the middle of August/Labor Day... and it's not stopping or stabilizing... and he still can't eat. The thrush is still bothering him even with nystatin topical and fluconazole internal.

He is too weak to shower; too dizzy without O2 to get up and walk the short distance to pee at night -- so last night he made a mess, tried to clean it up, kneeling down... he couldn't get back up. He's even losing strength in his thighs.

The drug the pulmonologist mentioned to help generate an appetite - is the one I've read in studies that only puts fat on.

Does anyone know if there are any emotional/psychology guides out there, beside Kubler-Ross for helping patients either choose to get well, or accept their transitions?

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