Life has had some pretty huge changes for us over the past couple of months. Good changes, this time! Not everyone is happy with me about these changes, but I figure, the people who matter will eventually get over it. If they don't get over it, I figure they were never sincere in caring about me anyway. Because someone who makes a judgement about you based on assumptions witho confirming any of those assumptions, and then cares more about wrongs you may or may not have even commited that really weren't against them at all either way, than your happiness and well being... I don't think they ever cared in the first place. Anyway. Life is amazing right now. Instarted dating my best friend (not Suzy, Greg!) And have since moved in with him. We all live in Texas now, and the weather is all humid and hot but the city is beautiful and the kids' school is awesome. The kids have adjusted well. Even Seth. Greg is amazing, too. He jumps right in to help me when I need it, I hardly ever even have to ask him. He makes decisions with me, he plays with the kids and listens to them, he helps with homework... he's really... i don't feel I have adequate words for how grateful I am and how much I love him. We're getting married this year. The talk was November, then December, and it'll probably be December, though if I got my way, we'd do it like, this weekend. Anyway, that about sums it up. Life is good.

How are we doing?

This seems a popular question right now. I have a lot of messages I've been putting off, asking this very thing. The answer isn't exactly simple, though, you know? We're fine, could sum it up. Overall we're just fine. And we'll get better than that, too. I find that my life is moving forward easily, much easier than I think people think it "should." It hasn't been a month yet, but I am definitely ready for the rest of my life. I remember when all this started, reading on lung cancer support boards about widows who were dating again already after just a few months, or even weeks and thinking, wow. Really? But you know what, now that I'm living it myself, I can see it. Karl as the man I married, as a husband, was gone emotionally and intimately months ago. Nearly a year, really. I know that for those of you who weren't here to see how things unfolded in person, up close and on a day-to-day basis that might seem cold, but it's really not. A once every few months visit shows you very little about the reality of things, and it also means you'll have a harder time moving on. But now, life does go on. It has to. I had two years to come to terms with this, and the last few months really drilled it in. And there is nothing that will truly prepare you for losing someone like that, even the pain they're in and the personality changes and the dementia, but I think once the initial shock wore off, I was more prepared to move on and get on with life than if he had died back when he was initially diagnosed, like doctors thought he would. I'm so glad I had that two years, too. And I think for this reason, the kids are moving on easier, too. Luke and Olivia are nearly back to normal. Olivia still kind of clings to things that remind her, and she's been a little easy to set off, but her routines are mostly normal now, and she's fairly agreeable again. As agreeable as Olivia gets, anyway...  Luke got broody for awhile, but he's always been a little bit broody. He's doing his normal things again, too. Back to reading, video games, and being geeky. Seth is angry. But even that is calming down. He seems to have plateaued now, where we're having meltdowns and anger but it's not constant anymore. I have an appointment with his dr. next week to discuss meds to help him cope

 I changed the blog title from Living with, to Living After Lung Cancer. We're not living with it anymore. It's still affecting every day of our lives, though. So now we focus on moving past it. What comes next? Life comes next, whether we want it to or not, it goes on. Personally, I want it to.

 It hit me last night, laying in bed next to my sleeping six year old... I am a single mom. Holy crap. TONI is a single mom. This is not how it was supposed to be. Whose idea was it to leave me in charge by myself? They need to be fired. I go two months without remembering to pay the electricity. I leave the oven on for 24 hours. I take three hour naps. I spend as much time playing video games as the kids do. I can't be in charge by myself.

 And then the sudden panic subsided and I realized that I've basically been a single mom for the last seven months anyway. My partner has been gone for awhile, and mostly all he did was bark out meaningless things, trying to be relevant. And I feel almost mean for saying that but it's true. I would back him up when I could but more often than not he was unreasonable. He took as much supervising -- more in the end -- than the kids.

 And now, I don't have to constantly be on top of whether the man is dealing okay with the kids, whether the kids are okay with him, leaving someone with him so I can go buy food, making sure the kids, who just want to be normal kids, aren't playing too much in the house because it was a lot of stress on Karl.

 And I realized how free I suddenly am. I can buy what I want and I don't have to take anyone else's opinion into consideration. I can take the kids out wherever I want and I don't have to worry about whether another adult in the houe is up to it, is in the mood for it, will feel left out if I go without him, or can't be left at all.

 I don't have to follow anyone else's timeline. I can do this single mom thing for as long as I want. Or I can start dating tomorrow. I can get another PUPPY! Okay, no. No more dogs. But you get the idea.

 Ideally, I'd have kept Karl forever. I would have him here and healthy and raising our kids together. But since that obviously isn't an option, I'm going to take each day and live it as fully as I can, on my own time and my own terms, not anyone else's.

The memorial service was on the 7th. It went alright, except I felt like I was on display all day. I don't like that. I'm more of a background kind of girl. And if anyone else tells me how sorry they are, my head will pop.

 Now I have a dead man in my closet. Well, his ashes anyway. This is not an idea I'm comfortable with. I also have the rod from his leg, which is going to Karl's brother, Chris, because Chris is weird. (Hi Chris.)

 Between family and friends and people they knew, I got enough money in sympathy cards and such that I don't have to worry about my bills this month, which is such a load off my shoulders. I was very, very worried about it. I also have enough to buy my kids some summer clothes, which is awesome because they all seem to have hit a growth spurt this month and Olivia's shirts are all way short on her. The boys are fine on shirts but they have NO shorts, and I think I'll get them each a pair of crocs, too. And boxers.

 The kids are all dealing in their own ways, still. Seth is having control issues. He has outbursts, and is constantly on edge and hyper. He's gotten a tad better, but I am gong to get him in to Hospice's bereavement counselor this week, I think. Luke is broody but that's not a huge change from normal Luke. He's my broody boy. Olivia is very cheerful. She is dealing best. I was worried at first because it seemed she was completely avoiding the topic of Karl. But now she's able to talk about him and handle it, and I'm so not worried about her. She accepts that he's dead, and not coming back. She misses him, but she isn't having too much trouble handling it.

 I miss him. I miss him so much. I was browsing the pictures in a friend's phone earlier and found one of Karl from halloween, dressed up as a zombie (I did an excellent job on his makeup, because I'm awesome tyvm) and I can't believe he was that healthy just 8 months ago. He wasn't even using the walker yet then. His pain was almost non-existent. I went through awhile where when I thought of him, all I could see was the way he looked in the last two days, but now I'm able to see his healthy face in my head again and it's nice to be able to have that. I took my ring off within a few days, because it made me hurt. I remember the day he gave it to me, and he handpicked it himself just for me. So I put it away. I tucked it into my trinket box next to his wedding band.

 Tomorrow I can pick up the death certificate. I found out we'll get $1440 a month in survivor benefits for the kids, which is more than enough to pay my bills. I don't have to work this summer. I feel so blessed and lucky to know I'll be able to be here with my kids to help ease this transition! I'll be able to take them out to do things! Trips to the park! To the library! We haven't been able to do things in months, since Karl started getting so bad. I feel like we have so much freedom now. Like we've all just been released from prison.

 We got out Friday. Greg came in for the funeral ans stayed the weekend, so Friday we took the kids to the park and played ball and tag and on the playground for a few hours and it was good. Seth was on edge and the kids fought like cats and dogs, but they'll get better. Time will fix all of us.

Today is my 7th wedding anniversary. Instead of planning a nice dinner and night aoone with my husband, I went and arranged his memorial service, and, at the funeral director's suggestion, set up an "in lieu of flowers" account with my bank.

it wasn't as rough of a day as it sounds. My emotions have been much more stable today than they have been since Friday. I got kind of weepy a few times but no all-out meltdowns. And for the first time since Karl died, I was able to eat a real meal and hold it down, too. Progress!

Olivia is in denial. She avoids the subject if her dad at all costs. When pressed she shows little emotion. I suppose she'll let it out when she's ready. The boys are letting it out at least. Luke is weepy, Seth is having angry outbursts and has decided that all repigion is a lie, there is no God, and prayer is a waste of time. I suppose to a 9 year old who just spent two years begging God to save his dad only to have it end this way, faith is hard to hang on to. I know he's been having doubts about God for some time, but Karl's death really cemented it in his mind.

 I completely lost it at the 24 hour mark last night. I was looking through our wedding album and Olivia's baby book, which has pictures of him holding her on the day she was born. He was so happy and so healthy and so handsome and it breaks my heart to remember the way he looked for the last week, and how much cancer aged him.

  I said I was ready for it. I thought I was beyond this kind of grief at this point. I thought I'd done my grieving before he even died, over the past six months since the real decline started. I was stupid. There is no being "ready" for this, no matter how sick he was or how long he'd been sick. It doesn't matter that he was really just a shell of the man I married, it still hurts like someone poured cement into my stomach. I can't eat and I can't think and I don't want to see anyone or do anything.

 But even with all of this, there is also relief. My life no longer revloves around him, and though I feel empty without something to orbit, I also feel less pressure, less stress, and less desperation.

I know this feeling will pass and life will move forward, and I'll feel better. My heart will heal, and things will be okay. My kids and I will find normal and our lives can finally go on, after two years of them revolving around cancer. I'm excited for this, even while I grieve.

Karl passed tonight just after 7. I was there, holding his hand, crying.
I don't know what to feel. I feel everything. Shock and grief and hyper and relief and disbelief. Like, my whole life has revolved around this for two years, and now it's gone. I have nothing to orbit.
I want to bounce on the bed, and curl up in a ball and cry, and throw every breakable item in my cupboard at a wall, and have a bottle of wine, and dig a big hole, and bang my head into my desk all at once.
What I do NOT want is company. Except for a very few select friends and family, I just want everyone else to stay away. And I think I'm perfectly entitled to do this alone if I want, if I need to. I don't have it in me to comfort anyone other than my kids, or to be comforted, either.

 It's so strange to think that he's going to die. Even as close as he is now, even after watching his decline, slow at first but so much faster every day, the idea is hard to grasp. It's almost surreal, the idea that he is going to go from alive to dead within the next few days, that he'll die at 40.

 Last night, while cleaning out a drawer, I found the love letters he wrote me while we were dating. The cleaning came to a halt pretty much immediately, and I spent the rest of the night curled up in a ball with them.

 Our 7th wedding anniversary is June 4th, and that will also be the two year anniversary of his first chemo treatment. I was just thinking to myself that more than 1/4 of our marriage has been spent fighting cancer. We were supposed to have so much longer. We were supposed to get old, and have grandkids, and retire, and spend our 50th anniversary on the beach, maybe get arrested for having sex in public. How is it possible that it will end like this? This can't be real.

The kids emotions are all over the place. So are mine. But I don't have time for my own, when my kids are in such pain. I have little stolen moments; the shower, or when I am taking out the trash. A lot of my time tonight has been spent holding one of the kids at any given time. My shirt is tear stained, and my heart aches for them. There are no words for this pain. The pain of losing my husband is nothing compared to how I hurt for his children.

 I don't even know what else to say tonight.

 I suppose I do, maybe.

 They're crying, off and on. But they are also laughing. I've said before how resilient kids are, and they're showing me just how true that really is. They have moments for sure, but just as much of their time has been spent laughing together. Playing, eating cookies, splashing their bath water all over the floor; normal kids things. And I know that as time passes, though they don't believe me now, their grief will lessen and they will have fewer, more spread out moments where they have to break down.

 I'm more emotional than I thought. I have felt kind of numb for some time, and I kind of miss my apathy. It was much easier not to feel.

what NOT to say or do with a soon-to-be widow

So many people have been so much help to me. I know everyone's intentions have been for the best. But even so, some things would just be so much easier if people just knew not to...

1. Tell her that if she needs anything to just ask.

This puts a lot of pressure and a lot of burden on her. It's hard to ask and it's hard to realize what you need to ask for help with. If you see her struggling, offer something specific. Or just jump in and do something. Don't wait to be asked.

2. Ask her for updates.

If you're close family, you'll get updates when there are updates. If you're not close family, shut up and just wait, you'll hear about it without a lot of wait after close family has heard. In fact, regardless of how close you are, if she has been updating facebook regularly, just look there. If it's not updated, assume there is simply no update and be patient.

3. Tell her how strong she is.

She's really not any more or less strong than anyone else and she's heard it 10002378 times and it gets old. She's just doing what she has to do. Instead, tell her she looks skinny today.

4. Tell her what she is doing wrong or that her grief is abnormal.

it's not. Everything she feels and says is normal and valid.

5. Facebook mesaage her. When she does not respond in a manner youbconsider timely, message asking if she got it. Continue messaging or texting or posting directly to her wall to ask if she got it.

This one speaks for itself.

 I'm typing this post from home while Karl lays in bed at a hospice in-patient facility, dying. He barely knew we were there earlier, when my mom and I took the kids. He kept talking about "that bitch who tried to get me off," meaning the nurse who put the catheter in because he is unable to pee on his own. He had wet the bed before that, so he's lost control of his bladder now. I don't feel guilty like I thought I would, about sending him there. I just can't handle him anymore. Physically. He kept trying to get up and waner here at home, and yesterday morning he actually fell. I called 911, and we got him to the hospital and the social worker there got hospice set up for us. I feel relieved. So much relief that taking care of him is no longer my responsibility. I can no longer handle his constant dementia. I was getting no more than 3 hours of sleep at a time, more often closer to an hour and a half. Last night, though, I was able to sit down, enjoy a small drink, relax and get a full eight hours of sleep. And I'm going to get it again tonight, and tomorrow night, and the night after. Life is already going on, and that's what Karl wanted for all of us all along.

 Today I had to sit the kids down and tell them straight out that their dad is going to die soon. They were all hysterical for awhile, but Luke came to terms with it fairly quickly. Olivia was able to understand it pretty fast, too. Seth is the hardest. For a chunk of the day he kept cycling through all of the stages of grief quickly, over and over again. I don't know if you've watched Monk, but there was an episode where Monk's therapist was quitting, and Monk went through the stages over and over, very quickly... it was pretty much the same thing. Almost comical, except that it's my nine year old and he's really hurting. I think a lot of it was forced, something he was doing because he thought it was what he was SUPPOSED to do. Tonight he's calmed down. He has a few moments here and there but is acting fairly normal, as are the other two. Because though I just said the words out loud to them today, they're not stupid kids and they've known for some time.

Last night, Karl was convinced again that we weren't home. It couldn't be home, he said, because things kept changing. Every time he came in things were changed here and there. Seth was trying to reassure him, telling him it's okay, we're at home and we're safe and Karl go angry.

"Stop fucking lying to me, you little asshole," he snapped. I was completely, utterly shocked. Seth was shocked and upset. Karl realized what he'd said fairly quick -- he wasn't entirely "with it" but he realizes who we are a lot of the time at least -- and cried and apologized but you can't take words like that back.

He hasn't known where we are for most of the last few days. My kids are watching all of this happen and I'm at a loss. I know Karl doesn't have much time left. A couple of weeks at best, and possibly only days. I can't have him calling the kids names and swearing at them for the last of it. But the idea of putting him in a nursing home or hospital is awful for me.

This is not the man I married. This is not a man I have been in love with for some time now. However, I do care about him, and the idea of him having a lucid moment and knowing where he is and that I put him there, as if I just got rid of him, breaks my heart. But on the other hand, the idea of this, who and what he is right now, being the kids' last memories of him, is just as bad.

I know that he is going to die, and even if he spends a couple of weeks sad in his lucid times that he's not home with us, he is going to die and then he won't be sad anymore at all. He won't even remember being sad. But the kids and I are still here and we're going to go on and live out our lives and we do have to remember everything that's happened.

I wish he would just die today. I don't mean that with any malevolence or anger. I'm just tired of making the hard decisions, I'm tired of watching this all unfold and I'm tired of having it run my life completely. Today, please God? Let it happen today.

This morning, Karl was up around 5, trying to leave the house. I woke up when the door opened, thank God I was sleeping in the living room. I asked him,

 "where are you going?" He didn't know, he thought he had to go to work, though. And talk to the people out there. At least he was using his walker...

Around 5:30, he needed to know where the closest bathroom was.

At some point in the night he'd gone to use the far bathroom through the kids' room, which is scary because their room is full of land mines, and I can't believe I just slept through it. He dropped his cane in there, too. He uses the walker but briings the cane for tight spots, and for moving crap out of the way. But anyway, he'd dropped it in there. I am a dead sleeper usually so I'm not really all THAT surprised I slept through it, but damn. I need to figure something out so I can be awake when he gets up.

Today has been rough. The day or two before, Karl was more lucid than he has been since the lake, hardly any hallucinations and more alert, but today we're worse than before. When we first woke up this morning, he was asking if I remembered him being on the floor in the middle of the night. I convinced him he couldn't have been, because he wouldn't have been able to get back up without me, and I hadn't helped him. So that was fine.

Then an hour ago, I'd just gotten out of the shower and overheard Karl and Luke talking about his recliner. Karl is convinced that sometime in the night, people came and switched his recliner out, and that the one he is in is not the same one he's had since January. He is convinced I'm in on this, and that I'm lying to him. He's not angry. He's very calm about all of this. But he's just dead convinced that I know his recliner isn't the same one, and I'm lying. This one is different. The control for the positioning is different and this "new" chair is cleaner. And poor Luke just doesn't know what to say, so he agreed with his dad about the chair looking different, so that helps nothing.

He was also convinced, around noon, right after a nap, that it was 5pm and that I'd been withholding his pills all day. Again, not mad, just convinced. The other day he thought I was giving him EXTRA to keep him doped up, and I'm not sure which accusation is worse...

He's been wide awake for all of these accusations and things. He makes others when he's half asleep, but these ones have all been while he was awake.

OH he was also convinced that a guy had been shot and killed in our back yard last night, but that one was easier to convince him it was a dream.

 On another note -- not more happy or more sad -- I lost my job. Okay, it IS happier. I hated that job so much and even though I have no idea how the bills are getting paid until my tax refund gets here, I am about 1000x more relaxed. Also, my house is cleaner. And my legs are shaved.

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.

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.

Intro!

No, I'm not the person with lung cancer; that would be my husband, Karl. But the focus of this blog is not only on Karl, but on our family as well -- Karl, our three young kids, and of course, myself, as well as Karl's brothers, sisters, parents, my parents and family, and our friends. Because the effects of cancer stretch far beyond the patient. The stress never belongs to just one person. The work load shifts, tension peaks, when one person is unable to do the work and live the life they're used to, and have to rely on others for day to day business. And the others, who are relied upon, feel the weight like they'd never have expected and there are times when that person is fairly sure they're going to break into a thousand little pieces.
But you can't. There are kids who need at least one functioning adult in the house; family members who need answers; people who just don't get it. I've seen this post going around facebook, about how we all want so much but a cancer patient has just one wish, to be cured. Well to hell with that. Cancer patients aren't martyrs. My husband certainly doesn't deserve what he has right now but cancer doesn't automatically make all of his other wants disappear. He wants a lot of things that aren't related to cancer at all; a bigger moniter for his computer. A rotweiler. A big shiny truck. Oh and FYI, a husband with cancer can be JUST AS OBNOXIOUS as one without. They still fart and pull the covers over your head, and they still giggle like little boys when they do. They still nag you over your hot water usage (sorry you had to take a cold shower this morning, dear!).
I guess the point is, life goes on, as it must. You have cancer. You get your treatments. You stay you, even while puking your guts out and losing all your hair and taking a small pharmacy's worth of pills each day. Maybe you can't physically do as much as you were once able to, but you adapt and find your new normal. And this goes for the family and friends as well; the new normal finds us all whether we like it or not.
Anywho, now that the ramble is done, you might be wondering, who are these people? Lemme tell you. My husband, as I said, is Karl. he was diagnosed with stage IV adenocarcinoma in May of 2010 at the age of 38 and has, thus far, outlived all expectations by a year now. I'm his wife, obviously, Toni. I'll be 29 on the 22nd of this month. We've been married 7 years this coming June, and we have three kids -- Luke is 10, Seth is 8, and Olivia is 6. All of them are smarter than we are, which makes life rather difficult since they are often able to out-logic us. Especially when we're stressed.
I work full time from home, doing data entry for a local software company. I also go to school full time, seeking a degree in graphic design. Karl is no longer able to work, but draws on disability which is a tremendous help. My parents live a mile up the road which has been an incredible help -- when we moved up here to be closer to them a year before Karl's diagnosis. we had no idea just how much we'd need to be exactly where we are.
Anywho, that is the basic run down. Caught up in the enthusiasm of a new blog, as I always am when I start one, I plan on posting daily... but we'll see how that goes.