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.

Failed adrenal glands, broken legs, hip surgery, oh my

I know, the title of this post sucks. I couldn't think of anything good or witty. Whatever.
The Friday before this last, Karl was admitted to the hopsital because his legs were swellign and painful and weak and he couldn't walk. So he was there for 5 days, and turns out his adrenal glands have failed, and so they're no longer producing a vital hormone, which he now gets synthetically. And he came home and got stronger; never quite back to normal but at least able to walk again.
This last Friday he developed a fever, so we went to the ER and found that he has pneumonia again. SO He got a loading dose of Levaquin and was sent home. Well, he was given the option to stay or go home with oral antibiotics and who chooses the hospital over home? Not us!
2:15am Tuesday morning, we went back to the hospital because his legs, though no longer swollen, had suddenly started hurting bad enough again that he couldn't walk. The fracture in his femur broke through and now he'll have surgery tomorrow; we're not sure yet whether he'll be getting a full hip replacement or just screws or a rod or what. The surgeon hasn't gotten back to us yet with his opinion. But I am terrified! He only has one functioning lung, and that one isn't even at full capacity. There is a huge risk of a bad reaction to the anesthetic because of it. And the recovery time is 4-6 weeks, so that means another month at minimum without chemo, and he's already gone since January 10th without it. And his cancer was already becoming more aggressive and spreading more.
I had a complete meltdown earlier, but the kids are home now so I have to hold it together. Tomorrow, my bff and sister-in-law, Suzy (back story: we met in 5th grade, I met Karl at Chris's wedding (Chris is their other brother) 8 years ago, and the rest is history <3)
What was I saying? So, Suzy is coming up to sit with me tomorrow. And she's bringing Nikki! I'm going to bite that baby's cheeks. Nom nom noms.

News. Not so good.

Things are just so chaotic here. I'm fighting hard to regain some level of control, but apparently it's a losing battle. So I have been OCD about what I thought would be controllable things; housework, homework, decluttering (I LOVE to get rid of things!). But it seems even these things are beyond my control. The kids have been an incredible help around the house, volunteering to do things, not complaining when they're asked. They stay happy, usually. but even so, I can feel their stress. They know what's going on. They're scared. They're sad. They have more weight on their shoulders than any kid should have to have. And there isn't anything I can do to take it from them. Unless you've had to sit by and watch someone you love be slowly tortured to death, and to watch your kids feel just as helpless as you do, you really have no idea.

We got this news on the first and had to let it sink in and talk to the kids before we posted it here. We talked to the oncologist about Karl's last PET scan and this was the news...

So his lungs and chest have more tumors and also show more metastatic activity (meaning it's more aggressive and spreading). It has spread to his adrenal gland as well -- the tumor that has popped up there is already at 2cm. The lesions on his leg bones have grown and there are new ones on his ribs and pelvis as well as new fractures (the bones are weakened and broken by the lesions). The big one in his lung is pinching a main bronchial tube so he's not getting enough air... and he has pneumonia so chemo is not an option until it's gone, at least a month. Then we can reevaluate the pneumonia and, in the doctor's own words, "decide whether or not to even continue treatment."

So what are we going to do? Before we make any decision, we're going to ask for another scan, with another imaging company; a second opinion. We want to be completely sure about what's going on before we make any real decision. And I'm going to start the process of getting together an advance directive, researching our state's laws regarding funerals and death (because we're well beyond poor, and traditional funerals are expensive, plus we want to be as "green" as we can be, we are looking into alternate choices). And we're going to call hospice.

And then we'll just keep on living. What else can we do?

Remember that small pharmacy I mentioned?

This is 24 hours' worth of meds for Karl. It includes blood pressure meds, four different types of pain killers, migraine control, antidepressants, prescription strength antacids, stool softeners, steroids, anti-pukey pills and then some.