The change in Karl's mental state over the past week has been immense. It's been hard to watch and hard to deal with.
 He sees things that aren't here. Things are happening in his head that aren't happening for the rest of us and he can't separate what is in his head from reality. It's not constant, but it is frequent. Last night we'd just gotten him out of the shower and back into bed. He was wide awake. I was playing Rift with my friend Greg, in Texas. And Karl sat up and started complaining that he couldn't get into the game. He couldn't remember his password. I changed it, and he couldn't get in, and he wanted to play. He insisted that he was at his computer -- the computer I was at myself, ten feet away -- and that I had changed his information and was now lying to him.
 This morning, he was convinced that he was being given harmful pills by an old woman, that she was here and going to hurt him. When he realized he was home and safe, he cried because it's scary, to go in and out of reality. It's scary and confusing and exhausting.
 He forgets words. He forgets what things are, what things are for.
 These kinds of things are happening because, or so I've read, though the oxygen level in his blood shows that it's good when I check, his body isn't properly circulating it to his brain. Lack of oxygen to his brain makes him hallucinate.
 I can no logner leave him without another adult to stay with him. It's too muc responsibility for any of the kids and Karl sits up, tries to stand and doesn't know what's going on around him. Someone -- he or the kids -- could get hurt and I just can't risk that. I can't imagine how my kids would feel if he got hurt while they were watching.
 Olivia has come home early the last two days, claiming to have thrown up. There were no witnesses and she's acted perfectly healthy. I really think she's just stressed. I think she's afraid to be away from Karl. She's feeling insecure right now.
 Seth has had meltdowns every day for a week. He's losing sleep, he's feeling out of control. Overall he hasn't been to hard to deal with but I ache for him.
 Luke holds so much inside and I don't know how to draw him out. He knows more than the other two. Not because I've told him more, but because he's observant and far too smart for his own good; Seth is just as smart, really but a lot less mature, less able to see things outside of himself. Luke, though, quietly watches all of this happening and he's losing sleep, too. I go check on him at 12, 1,2 in the morning and he's laying in his bed in the dark, awake.
 I'm giving Karl his oxycodone around the clock now. Every three hours. I set alarms. It means I lose a lot of sleep, too, but even with this schedule he's still writhing in pain a good chunk of the time so I don't know whate else to do. It's not like I was sleeping much anyway. My mind is so full of things. How messy my house has gotten, how stressed my kids are, listening to the sounds of Karl moaning in pain all night, the lack of money, the worries about funeral costs and bill paying...
 I lost my job yesterday. I feel more relief than anything, to be honest. I know, that's crazy; I now have ONLY Karl's SSI income, and that will stop when he dies. So that should tell you how much I hated doing data entry, right? I was going to be productive today but I decided to just give myself a day. I'm not doing well at it. My mom came over to help me move a couple of heavy tables, a bookshelf and a saw out to the curb to offer for free. It was gone within 10 minutes. Mom and I watched, whispering cheers that it was all being taken. Woooo! I love to get rid of things. It's a favorite hobby of mine. I am constantly thinking, why do I have this? To goodwill with ye! Because I'm a dork like that. I've tried selling but no one wants to spend any money on anything. I did get $100 for the go cart a few weeks ago and another $124 for my yellow Kate Spade bag, but for the most part... stuff just isn't selling.
 I'm going to offer Karl's tools to my dad. He can have them ALL. Except one of each kind of screwdriver and a hammer. I don't know how or care to use ratchets or wrenches and whatnot anyway.
 I'm geting myself ready to get out of Arizona. I'm going to Texas. I'm looking forward to this huge change. It won't be for a few months after Karl passes, I don't want to change too much for the kids all at once. And I'll get their opinions, get them mentally prepared. I think they'll enjoy a change as much as I will. I think there will be people mad at me, but I'm past caring. The people who matter, understand. Suzy, Chris, my parents, Velia, Paige.

Friday afternoon, Karl had an x-ray done, because his leg has been hurting bad again, and he wanted to make sure everything is where it should be. From there, we went to a physical therapy appointment, which happens to be in the same office as his primary care doctor. So he was getting adjusted and the doctor called to give us the results from the x-ray. Since we were there, he came back to talk to us and give us the printout. According to radiology at the hospital, where the x-rays were taken, there was an opacity in the bone around the rid that was put in, in March, that could suggest an infection clinging to it. So we were sent to the ER to get an IV infusion of antibiotics. That never happened, because the ER doctor decided a second opinion was needed (because the radiologist form today had no idea about the cancer, he was basing his opinion on that lack of information), and he called the radiologist at the other hospital campus and together they compared the new x-rays with the old ones, and the new opacity is consistent with what the cancerous lesions that are already there look like. So the conclusion for the moment is that the cancer has simply spread further into the bone and is just eating through it. Now, to be absolutely sure the doctor ordered a test that we scheduled for Thursday, but it's probably the cancer rather than an infection.  To be honest, the cancer is the prefered problem here. Because infection means having to have the rod taken out, which means his bone will no longer have that support for one thing, and he will be bed ridden for months -- yes, months -- while they "sterilize" it and await the time to put a new rod in. And the first surgery was incredibly painful, and the recovery was hell.  Karl hasn't had chemo since January 10th and the decision at this time is that he's not getting it again. It's not something he can handle physically or emotionally, and I'm not sure me or the kids could, either. We're going to get set up on hospice this week and go from there. Focus on comfort and quality, because right now his quality of life is shit and all of the focus is on the amount of pain he's in; there isn't a moment anymore where he's not in pain.

 This is what I posted on facebook, but since then there have been more updates. Hospice is probably not going to happen because since we enrolled Karl on the long term care system, the two services are redundant and hospice is rarely approved. This doesn't mean much difference; he's still getting the same kind of end-of-life care.

 He wheezes almost all the time now, on or off oxygen, awake or not. He isn't awake all that much and he get disoriented easily. The other night, he was asking me if I'd caught "those snakes." and I was like, what snakes? and he said, "The ones that are overrunning the house!" /boggle

Spouses of Patients

 People keep telling me, "You're so strong!" and "I could never do it!"  Things along those lines. Sometimes just a sentence, sometimes a whole paragraph or speech. And I get that they're well-meaning, I get that they really mean it and I do appreciate the sentiment. But those of us in my position, the husbands and the wives and any other family caregiver... we're not what you think we are. We handle it the same way you would. We get out of bed, we do what needs to be done, and sometimes we hold it together but not always. We have good days and bad days.

  We're not saints and we're not martyrs. Sometimes we cope in selfish ways. We have tantrums and meltdowns and we say hurtful things. We do wrong.

 Sometimes we resent the sick person we love. Sometimes we stop loving them, whether for five minutes, a few days, or permanently.

 Sometimes we snap at them, and sometimes they snap back. We have our fights with them just like anyone else. Sometimes we are the instigators. We take things too personally or not personally enough.

 Some of us have affairs. We fall in love with other people. We plan for a future without the husband or wife, though they are still here.

 Maybe we stay because we love the dying person, maybe because we can't imagine being without them, even while we know that soon that time will come. Maybe we stay because we feel guilty for one reason or another. Maybe we stay because we know that everyone else we care about would hate us, if we were to leave. It could be any or all of these, and the reason can change from day to day.

 I don't speak for myself alone here; I have talked to others. I've heard their stories. We all react in our own way, but we've decided that however we react is normal. It's okay. But what it is not, is better or stronger or wiser or more caring than anyone else. You would do it, too, even if right now you think you couldn't.

And if you don't, choosing not to do it doesn't make you a terrible person. I would empathise with the woman who left her dying husband because I know how exactly what she's feeling. I feel it, too.

 I just don't know how to handle any of this, you know? How am I supposed to know? I've never done this before. I've never sat by and watched someone I love be tortured to death until now. I mean, I know my great grandma and my great aunt were in a lot of pain when they dfied but I was young, I didn't live with them and I think I was kind of shielded from the worst of it; we went and saw them but I guess I just didn't get it, or didn't see them at the worst. I wish with everything I have I could shield my kids from this.
 But kids, they're more resilient than we give them credit for. Yeah, they're stressed out by this and they know more than they should have to know. But their lives are going on through it. They wake up, they go to school, they do their homework, they bathe and dress and eat and play with their friends. It's my life, not theirs, that's not going on through it, because my whole life is being consumed by this. I wake up, I get Karl food, I sleep, I get the kids off to school, I help Karl in and out of bed, I empty the urinal, I help Karl in and out of cars for appointments (of which there are 2-3 every week right now, but that will end soon and I will explain that coming up), I carry his oxygen along like it's a leash; for him or for myself, I'm not sure. And through all of this, I dont' cry. I don't laugh, not a real laugh. Not a laugh that means anything. I'm trying to keep up appearances but I just feel numb and I don't think I'm fooling anyone. I'm not depressed, I'm just exhausted. My body and my heart are ready for this to be over, and I don't care how it ends anymore, and maybe that sounds cold but it's the truth. And what is the point of this blog if I'm not telling the truth? Everyone should know what happens when a person is dying from lung cancer, and it's not just happening to him, it's happening to all of us. It's not pleasant for anyone. It's not just torture for the patient, but for everyone around him as well. I'm ready for Karl to stop hurting and I'm ready for me to stop hurting, and I'm ready to let my kids' lives find some kind of normalcy.
 Karl and I are discussing hospice. The possibility of taking our focus off of a cure and putting it on comfort, and on being able to say no to 10+ appointments a month, on being able to be here together and create some memories that don't involve writhing in pain. Already it's been 3 1/2 months since Karl had chemo and he's in no shape to get it right now, probably ever again. The last CT scan didn't show very much growth, so it's not growing out of control or anything, but between his back and his leg, he's in too much pain to handle it. Hospice will help with that pain. Hospice means we're not going to the oncologist, it means the physical therapist can come to us, it means staying home for more (not all) care. And I think that will help all of us a lot.
 So that's what's going on now.

5 things no one ever thinks they'll have to do.

1. Set up a hospital bed in your living room

2. Leave your ten year old to babysit his father so you can take a shower or run to the store for food.

3. Actually carry out the advance directive of your spouse, well before they're old.

4. Use the power of attorney you have to make medical decisions said spouse is unable to make for himself

5. Wonder how you are going to pay rent, buy food, keep the electricity on, and pay for a funeral out of one month's income of $1000.

Fun pictures!

On the first, Karl had surgery to have a rod and screw put into his bone. The lesions on his left femur had eaten practically through the bone and it had cracked through, so his pain was only getting worse and it needed stabilization to prevent more cracks, or from slipping completely off.
The first few days after his surgery, after he got home I mean (because the very first night he was shaking, screaming and sweating in pain, and the next two they kept him for general, normal, after-surgery observation), which was actually days 4,5,6, whatever... he was sore and really stiff. But now he is doing SO MUCH BETTER. It's like night and day. He's still stiff and sore but he's not using his pain meds as much as he's allowed. Still quite a bit, but he can take his dilaudid every 2 hours and he's only taking it like every 4. And before, he was supposed to take it every 3 but he was taking it like once an hour lol. He still can't do much on his own, he has to use the walker because he's fairly weak and the femur that was rodded makes the joint and general area stiff and sore. But even with that stiffness, the lessened pain makes him much more mobile. He needs help showering (Hon, can you please turn the shower head off of me? ok now turn it back), dressing, getting in and out of bed, in and out of cars, getting food, doing general personal care still but I can't even tell you how relieved I am that he's not constantly in pain at an 8-10 level. He is on oxygen a good 80% of the time now -- especially at night, because pain meds suppress his breathing and being asleep also does this, and he was dropping down to low 80's at night without it. We see a home health nurse once or twice a week, and a physical therapist comes once a week, too. She annoys the shit out of me. She's very nice, and she goes out of her way to do much more for her patients than the job calls for -- what? You need a hand-held shower head? I will find you one! -- but she is also bad abotu talking down to Karl, acting like he's maybe 3, or an 80 year old dementia patient. Pfft, woman! If anyone is going to roll her eyes and talk to my husband like he's 3 it will be ME tyvm.
I also can't even express my gratitude to the many people who've been there for us for all of this. Suzy took the kids home with her for two nights after Karl's surgery so I could be there with him and stuff. Best best friend ever. Olivia gushed about playing with Nikki for a week LOL My parents, who take the kids an awful lot (they are also thankful to Suzy for taking them those nights lol). Karl's youngest brother Scott (my favorite BIL btw), his dad and step-mom and her bff Olie, who all came up and built a ramp coming off our front porch so Karl would be able to come home, and get in and out of the house for appointments safely. Lamont and Toni even bought the wood, and I was planning on doing in. LOL Lamont ALSO decided that building the ramp meant he got a new nail gun, hahaha. And the so many of you out there who have been praying for Karl's health, for my sanity, for all of it, I can't even thank you enough. It really does help, knowing that there are so many people out there praying I don't even know hoe many there are. It's comforting. It gives me peace. It gives Karl peace. The day he went into the hospital this last time I had hit rock bottom. I had multiple meltdowns. I cried, I screamed, I stomped my little feet. I think that's ok. But it was all the love that got me through it.
OH and my mom and sister, who came over last Friday and stayed up LATE with me, scrubbing the house and rearranging it to make sure Karl could get around safely in it with his walker when he got home, and also just to help me catch up because it had gotten prety bad.
We see the oncologist next week, we'll probably get another scan to get a baseline before we make any decisions regarding chemo and treatment.