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.
Wednesday, February 29, 2012
Monday, February 6, 2012
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?
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?
Thursday, February 2, 2012
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.
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.
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