PR's new saga...

[sKePTiKal]

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.

EXACTLY how I feel; what I feel is needed. The binder is actually a good idea. And a hi-lighter. Except for the PCP, none of the rest are all that good at this. And the fact that there is some behind the scenes, marking of territory and power struggles and major disagreements... ain't helping any.

There is one more puzzle piece: they assume that because I wasn't permananently attached to his side, that we must not be close. They assume that I'm much younger, a specimen of perfect health & endurance, and that while I understand quite a bit of the medical vocabulary -- many times, in conversation, there is an overwhelming emotional response from me that causes me to tune out what they are saying; for their words to be just "noise" sans meaning; for me to drift away into a "bigger picture" mental image of the impact of certain new information. They don't understand, that because hubs is the patient -- part of me is ALSO a patient; I just need different things.

Spot on, Garbanzo!!

Well, we have O2 available 24/7 at home now; and hubs will have portable bottles on Monday. It's a very big change and not quite comfortable for him to use it continuously. I'm not being an oxygen-nazi; we set the amount down a little for sleeping with the first night and he got 4-5 hrs of sleep in, before he had to turn it off. I think there's a little bit of macho-shame conflict going on with the stigma of the tubes & bottle for him. So I'm not pushing him to use it when gets up for a potty break or to visit the kitchen for a drink or snack. Just having it HERE and using it for an hour or two at a time, seems to be helping. His cough sounds have changed; less yucky and more clear. And I think this will help with his energy and being able to eat. In time. Not rushing anything.

Last night he said, he never wanted me to have to go through this, like this. My dr friend, is the one who pointed out to me, that he wasn't being stubborn about pretending there wasn't anything wrong; hubs was trying to protect me from the reality. I cried this morning, when hubs got up and made me coffee for the first time in 2 1/2 weeks. He was always up before the sun and this was his little thing he always did for me. I always leaned on him when I was crushed; like now. I been trying to tell him to lean on me now. LOL - but he really is stubborn and hard-headed. Has to be, to put up with me.

We celebrated our anniversary this year in the elevator down to pre-op for the exploratory surgery. He thought I'd be mad he didn't remember... LOL. At least he FINALLY agreed to get help that I couldn't give him. Silly boy. He was so scared about that procedure and anasthesia. Never had stitches, or broken anything, or was seriously ill before. He felt like he'd been dropped onto another planet and the evil aliens were studying him. Pretty apt description, actually.

[Meh]

Reading.

  Doctors are not really being evil though. They are trying to help in their evasive messed up way.

Having my morning cup of coffee.

[Hopalong]

Agreed about docs. They wear masks and are desensitized but inside, still human and working in an inhuman system. They are your allies (with exceptions, but...).

PR hon....oh the daily enormity of it all. That's what I remember. When a loved one's life and health are in crisis, it's a daily enormity. Adrenalin pours all over the windshield. Rest feels like cheating. Colors fade or brighten.

Life itself compresses and glows. Fatigue finds new cells to occupy.

It's awful and beautiful at the same time.

love to you
Hops

[lighter]

Amber:

I don't know if it's appropriate or possible, but maybe you could include your retired medical friend in some of the more important medical appointments?

I remember having to stop and put my head between my knees on my way to my father's hospital room at one point.  Just the smell of the hospital made me light headed.  It is like we're the patient too.... sort of, IME.

I still don't understand why M can't put you on a list of people to receive all information and discuss anything with medical professionals.  It was so helpful for my sibs and I to access information, test results, and doctors when we needed to. My mom put us on a list, is how she explained it, and insisted we be given everything we asked for.  The nurses were helpful, and forthcoming.

::sending strength:::

((((Amber and dh))))

Lighter

[Meh]

reading it all

[sKePTiKal]

Lighter - it's because the docs were all brand-new in the hospital; we covered the paper work when we did the office visits. Much of that is now corrected. And you're spot-on -- we DO tend to put ourselves in the position of the patient and suffer just as much. I know, tho - that my symptoms are almost the complete opposite of his. Together, we're just one big happy mess - LOL.

We had tests in the city both Wed/Thursday and that's why I've been awol. Trying to get some/any food into him before, between and around those trips has become a lesson in futility. He goes into mini-crisis with the breathing and his body focuses all his energy on breathing - he CAN'T physically eat. He chokes; says food gets stuck going down. Milkshakes and frosties seem to be OK. And those damn peaches.

After those back to back trips in the car with O2 and with every measure to help him conserve energy... he was showing symptoms of congestive heart failure last night. None of the docs have said: if this happens call, no matter the time. If I drag him the 12 miles to Nags Head & the ER - that will worsen his symptoms and they have no facilities to care for him; all they can do is initial diagnosis and send him to the city. We screwed up on understanding the depth of the medical capabilities here, when we did our research for the move. Of course, I sure never anticipated having 2 cancer patients on my hands in 5 years, either. His mom died 5 years ago next month. I just remembered that this morning.

I've had to do my own research and it's a good thing I learned how to read medical journals without going cross-eyed, for the pertinant info, and skipping over the yadda-yadda-yadda. And while it helps me tons to have some data to understand what's going on, I know I'm still not a doc. Test should be over with now - except for fewer, farther apart to track changed. Next week is dr appts again and while they're still reversed (according to bombastic doc) in order -- I'm not responsible for the overload in either of their schedules, and I am doing everything I can, not to upset hubs' willingness/ability to eat in the mornings. He is eating fewer than 1000 calories a day and I know he's lost more weight. That contradicts and makes risky almost all of the "treatments"; I need to do some research on his breathing/blood tests and check where he falls on CO2 and carbon monoxide. Yes, I'm having to teach myself how to read those things. I'm concerned about congestive heart failure - in conjunction with the cancer & COPD. He does have those symptoms after any level of exertion.

So, that list of 10 daily life activities? He manages 2-3 of them on his own right now. His mom was doing better than that, even the day of her terminal stroke.

I am regrouping, learning, trying to understand, trying to smother his distress in kindness (and O2), running errands, taking care of all the usual crap people gotta do... and my new car with all the electronic junk on it is giving me fits. Gotta add air to the back tire, just to get the warning to clear off the dash. It's only because the avg daily temp has dropped 10 degrees this week.

I still need time to spew everything outta my head; and time to work without "thinking" at all... but today is recovery day for both of us right now.

[lighter]

sKeP:

So glad to read you're enjoying a down day.  They're so nice..... such a relief.

About the food...... if M is drinking shakes, and you haven't added protein powder and all things you can think of that M might enjoy, maybe you can find the brands he can tolerate well?  I like certain brands and hate others, so maybe you can get some samples to try out and see.

I know juicing is big where I'm at, and we can get them at the Earthfare grocery store at a good price.  I like the ones with celery base, not cucumber, and the blue green algae.... kale are good.  Throw some into the peach smoothies and you might have something M will drink happily.... or not.  I know how difficult it is.... how frustrating. 

If you can get the juice into him, a bit of flax seed, and some zeolites,  to remove toxins, might be helpful too.  The zeolites are volcanic ash that bind to toxins in the system, and move them out.  Best on empty stomach, but I use it with straight up juice and water.  My mom really liked hot peppers in hers.

Turmeric is pretty awesome.... really helps with inflammation, IME.  Good in the juice, and I like the color.

The weight loss is a problem. 

It's hard not to throw things into the mix that might actually ruin shakes, juices and smoothies for M,  so it's ok to just let them be what they are if it looks like M is drinking less for all your hard work.  Step back, and just let it be a regular frosty or plain ice cream shake for a bit, then maybe try another brand of protein powder again when he's feeling better.

I wonder how he feels about soups?  It's the right time of year for them, and I can think of all kinds blended into lovely comforting potions of health.  I'd be fixated on the food aspect pretty hard too.

I found some of the eating for your blood type stuff to be helpful, if you haven't looked at that.

Whole organic fruit (peach) popsicles might be good to add to the mix?

Having different things to offer, that don't create more trauma, helped me to stay level.  Even if the answer was NO, at least I could offer several things that WOULD work if Mom was going to eat.  She really loved Thai coconut soup so we cooked batches and froze in single servings, along with anything else she tolerated well or asked for.  Basil lemonade as green as green could be was cool and refreshing.... stevia so blood sugar didn't get out of whack, and good frozen too.   She loved chicken tortilla soup cooked once weekly at one of her favorite restaurants.


We organized freezer, and made a menu my sf could offer to my mom to make their lives easier.  She pointed, and he had lots of choices easily accessed to cut down on food trauma until we go there to cook fresh again. 

If bananas foster is something that appeals, make it and blend it into a shake maybe.... who wold taste a little protein powder with that lovely mix?

::sending strength::

Lighter


 

[sKePTiKal]

Thanks, Lighter.

Every time I think I have a solution for a problem, something else pops up. Now, swallowing is an issue. He's choking on small things, like a single ibuprofen. He has a mega-narcotic pill for pain, which I'm not at all sure why it was even prescribed since Mr. "I'm Fine" never complained of pain in a BIG way; just an irritating result from the biopsies. So last night, when he was clearly having issues with the 2 ribs involved with the lung tumor, I offered up what he normally takes for a headache or whatever. He could barely get that and his singulaire down without hurling. So, I believe him when he says he simply can't swallow anything other than liquids. He is not at all interested in that narcotic; at least right now. And I'm still working on getting him to talk to me.

The night sweats are back again too. It was just one shirt 2 nights ago; 2 shirts last night -- after resting most of the day. That is one sign of congestive heart failure, that I've learned about.

I kinda feel like I'm playing whack-a-mole with issues. And according to all my research and what we've been told by various support people - this swallowing issue should've been a minor and quickly resolving problem from the bronchoscopy. That one gets to be my "follow up" appt star/priority next week. I think he's lost almost another 10 lbs. (So have I; but I had it to lose and it's because I've been a LOT more physically active.)

He's been ruminating a lot. The 4-Day Torture Tests/Blur of being in the hospital with people doing things to him, but not taking the time to really talk to him and explain what was going on and why... keeps running through his head. Everyone's worried about depression, but as I explained to him - some depression is going to be perfectly normal. His whole life changed pretty much overnight with very little warning. I'm a tad peeved that the medical vampires gave him back to me in a LOT worse shape than he was, when we tried to get some help. The difference is night and day. It's like they broke him; his spirit.

He did order himself a nutribullet, cookbooks, and a stack of books on COPD and Cancer. He didn't hear me, at all, about the COPD being the #1 order of business to deal with... until he read a little. Now that that is sinking in, he's feeling like he "should" have gone to the doc sooner; that he would've been better able to withstand this onslaught of tests; that he waited too long. He's doing the thing his mom did: I don't want to be such a burden on you... sigh. And because when I sit with him, I can't just sit around, I always have the ipad to read, search, look things up, etc... but he feels he can't talk to me because there have been times I was reading, the tv was blaring and he tried to me - all at the same time - and my brain locked up because I can't split my attention that many times.

So, I put it in simple, clear direct terms that no matter what I was doing, he took precedence over everything else. He's had a pattern of trying to take ownership/responsiblity for my feelings, too -- and that's an obstacle right now. I need to get him around to a new focus of planning. Reviewing what's in his health directive, see if that's changed any - any specifics changed and make those notes. He needs to understand that denying his body calories isn't going to HELP COPD - his lungs need energy to function. At this point, I'm worried that the "cahexia" - wasting body mass/muscle loss - is shifting into anorexia.

Been reading hospice literature on different kinds of depression/grief of the terminally ill. Recognized that I'm pretty much involved with anticipatory grief... oh BOY, another round on the grief wheel (there CAN'T be that much left I haven't already "gotten")... but a lot of hubs' is involved with loss of control over his body (for now) and the slow dawning realization that his life isn't going to "go back" to what it was. And yes, I'm going to grade all the docs a big fat F, for not making the effort to try to talk to hubs about what he is going through and make helpful suggestions about coping and tell him the truth: we can't make you "good as new", and in the process of saving your life - you're going to endure things you never imagined. At LEAST find a patient education representative or something; the health insurance company is doing better than the docs with their "care management RN" program. Sometimes, it's easier to talk to a stranger... and the phone calls usually give me about an hour "off" duty.

He was so exhausted Thursday, that he fell asleep on the PET scan table. The nice technician said he'd give him 15 minutes, then wake him. Simple human things; people talking to him and letting him talk - even small talk are what he needs. Not waiting an hour in a claustrophobic exam room and then summarily yelled that we already knew stuff, that we had questions about. I'm still angry at him for doing that. People don't go to the doctor until it's too late, because the level of fear about "knowing" is greater than the level of discomfort (and nagging wife) already experienced. I make it a point to read something that I'm looking at to him, to engage him (when he's awake) every 1/2 hr or so for a few minutes at a time. I'm trying to get my "special" brand of dark, sick humor going too... but it's tough; he's still in his shell. So, I'm being patient and gentle for the time being. Trying to find anything that "feels good" and to keep that going when he's awake, too.

Underneath, he's angry about being dependent on me. I see that one coming, because I won't let him drive. Not when he drops off to sleep in the middle of a sentence. While on O2. Not when he's so weak, fuzzy-headed, or running a fever (from the cancer and heart related stuff... exacerbated by the COPD and Cancer... sigh).

Maybe I just try to fit things in my favorite "cycle theory" - but this sure looks like a negative feedback loop. And I s'pose it'll take twice as much energy to reverse that cycle and get it to be the default "setting"...

[debkor]

PR

I'm sorry to hear about your hubs. Everything you have written I say..YES.. I hear you!!  My friend I spoke of on here often was diagnosed with stage 3 triple negative breast cancer 6 months ago. It's a journey. It's all kinds of fears and emotions.

The anger they feel about being dependent? Yes!  Although my friend never wanted cancer she had control and choice over her treatment and the fight of her life. It was the after effects of chemo. The weakness and the pain of needing help just to step out of the bath tub she needed help.Things like that.

She was tired of pokes and test and Dr's and just about feeling better to start her next round of chemo. Ugh!  I was the Eat, You Must Eat!  I think I know just about every smoothie in the world now.

When she was hungry the sores in her mouth (side effect) made it painful. And I did the ..well what about this smoothie?  She hated smoothies.  So she did the best she could. Although she wouldn't of touched my smoothie.

I think mostly what she needed was for me to stay me. If she needed help she would ask..so while in Walmart one night and her sporting a lovely blond wig looking great and me telling her so, she whipped it off, how about now? Her friend that was with her was horrified and we all laughed up a storm, while she was swinging her wig in her hands as shoppers, shopped. Then she plopped it back on her head and her bangs were side ways. I did a GAWD..and went into some hair fashion frenzy as..shoppers Shopped, lol. That's what we do..we laugh!!  Then I just all out dyed my under hair..hot pink in support. Yup 59 years old with pink hair and didn't care.

Don't forget in these hard times PR to be you and to be you with hubby!!
It's okay PR to feel whatever you feel. If you want to go drink a bottle of wine and howl at the moon. Do it.

Lots of love and pray in these difficult times
 Oh and it looks like my friend is winning the battle!!

[lighter]

PR:

I don't know about your hubs, but.... what we called the pot pills gave my mom her sense of humor back.  They made her feel and act normal when she wasn't OK during her journey. 

They also helped her with appetite, which made us all feel a lot better. 

About things/problems/symptoms popping up, whack a mole style. 

Yes. 

So true.

It seemed like solving one problem created 2 more, and so on.   

About the congestive heart failure.....
My elderly friend lived with congestive heart failure for years.  She slept sitting up, was on meds, and ate virtually zero salt, but she hung in there a very long time.  Over 10 years, and she ate very little food bc of crones disease... everything she ate hurt her.  I'm trying to make you feel better.  I hope I'm not making you feel worse.  She lived for years weighing between 70 and 80 pounds..... and she still had plenty of energy near her death in her 80's.   

Final analysis.... there aren't any good answers, so we choose the one that does the least amount of harm.  To us, and to our loved one. 

Maybe if I'd stepped back, and let B ask me for help.... he would have taken more pain medication?  He was on a very low dose, btw.  Not much at all.  I don't know why he fought it so hard, but maybe if I'd have given him the space to feel responsible for it.... he would have? 

The truth is.... moods shift, and we can't know what our loved ones are going to need or want all the time.  We're going to miss the mark even if we're perfectly in tune with them, nc sometimes our being in tune bothers them.  Everything around us is out of whack.... things can't be OK, bc they aren't.

If I had to do it again, I would have kept the house more cheery for us all.... for visitors.  It was dreadful.  I wasn't prepared for it, and just doing an hour or more of housekeeping in that big house at the end of every day was taxing for me with the pain med schedule, and lack of sleep.  I was drained, and self care rituals went out the window.  I can't remember anything about taking care of myself... but I can tell you about all of B's in that 5 month period.  I know I bathed, of course, but I wasn't really present in my body is the point.  I wasn't connected to my needs, and that's when I ruined my knee/tore my ACL, bc I wasn't stretching before work outs.  My body was suffering from sleep deprivation and lack of self care, and nutrition too.

I wish I'd researched pain meds and not depended on whatever the doc told us we needed, which didn't work at all.  Time released meds would have benefited EVERYONE by a mile, IMO for B. Oral liquid meds for my mother, I think, and then the patches and calming creams.   There isn't enough information out there, for sure, but the pot pills were worth their weight in gold for mum.  Ask.

Take care of yourself, Amber.  Let hubs ask for your help if you can... if he can.  It might restore some balance, maybe not, but..... I can tell you that not caring for myself, and being hyper alert to BN's every breath didn't work all that well either.

(((Amber and M)))

You're  both in my prayers,
Lighter









 

 

[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.      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.
--------------------------------------------------------------

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?