(edited at the bottom)
Sorry I haven't posted in a bit - and thank you to those who answered my question on LFCA and have checked on me since. I appreciate it greatly!
It turns out that the hallucinations and confusion were, indeed, medication related. They've lowered her methodone to 1 1/2 pills 2x a day, and she isn't taking the morphine like she was. Now she's taking it to help her breathe, along with some haloperidol. Her oxygen tank isn't singing to her anymore - it broke and they had to fix it, now it won't sing. The fan, on the other hand, is singing...so it's all good.
Mom is having such a hard time with breathing that yesterday, she thought she was going to go...that it was time. She pulled through, but she's starting to get the "make sure everyone knows I love and appreciate them" feelings, which is an indicator to me. She's trying to set things right.
My sister is still being a bitch in denial. She refuses to see what's in front of her and it's driving me batty. Last night we had this series of texts (S is my sister):
S: So how's mom this weekend?
Me: It's been a rough weekend. Having a hard time breathing.
S: She seemed pretty good when we were there last weekend. The boys were surprised.
Me: Things are just slowly getting worse, that's all. Morphine helps her breathe better, so she's taking that again.
S: I don't think she even took any while we were there. Are you sure you aren't making it worse than it really is? You are a bit of a drama queeen sometimes. It hasn't even been a week since we were there...
I was furious. I went to my mother and asked her to do me a favor - please call my bitch of a sister and tell her that things ARE getting worse, that she IS having a hard time breathing, that she HAS indeed taken the morphine (and the haloperidol) and that if she's going to be such a bitch she can just not talk to me again. I burst into tears about halfway through the request and went to my room, laid down and had myself a good tear. Mom came to find me (her oxygen cord reaches that far) and we had a talk. She agrees that my sister is being a bitch, but that it isn't just to me - her son called her on it the other day and her husband confirmed that it's been a few weeks that she's been like this. I, personally, don't give a fuck - she can be a bitch, but I won't tolerate it. She can just not talk to my like my brother and I will not be heartbroken. Both times I've had contact with her in the last month she's been a bitch and I WILL NOT PUT UP WITH IT. I am not her whipping boy, I am her sister.
At mom's suggestion I sent back a message that said "If you really think I'm being a DRAMA QUEEN about this, then call mom and ask her". She hasn't called... Mom is going to call her today though and talk to her. I told mom to be sure to tell my sister that her bitchiness is not appreciated and will not be tolerated - I don't think she will, though, although I DO think she'll tell my sister that I'm seriously pissed off at her. Yes, I should probably call my sister to the carpet for this...but right now, it's easier to just let it slide and ignore her permanently. If that proves impossible, then I'll have to deal with it. I'm just trying very hard not to put more on my plate than I have to.
*EDIT* I forgot to mention the coolest bit! They put mom on a catheter, to see if it would help get rid of some of the excess fluid she's got. Between the 22nd and the 25th, she'd lost 5000mL of fluid. You read that right - 5K. By they time they took it out for a bit on Thursday, she'd lost 4 GALLONS of fluid. That's a lot! She'd been feeling much better - able to breathe, less swollen - but they had to take it out because it had slipped down and was pressing against the urethra, causing cramps. They put it back in today and it was already filling by the time the hospice lady left!
Sunday, August 31, 2008
Thursday, August 7, 2008
A strange man
I have many posts to make and I COULD combine them all into one, but I really hate it when people write mondo posts and I have to read through it. I'd far rather have a series of smaller ones, which is what I'm going to try and do over the next week or so.
This one involves mom's state of mind, which means it might end up long.
Mom's methodone dosage has been upped from one tablet twice a day to two tablets twice a day, and her hallucinations have increased with the dosage. She's had a few funny ones: There was one about 3 "box people" named Faith, Love and Hungry. She made dad feed hungry (scrambled eggs!) and he became Happy. Dad wouldn't let her go for a walk with them, though, so they went away. I found THAT one interesting, because Faith, Love and Joy (happy) are three of the "fruits of the Spirit" and my mother is very religious. I think they might have been angels, come to take her, but that the family isn't ready yet...jmo, of course. Then she had another about a reindeer named Jingle Bells, and the neighbors had reindeer who ran away to my parents house and were now mad at my parents because they paid their reindeer more than the neighbors did. That one made no sense. While I was there, she heard flute music...something she recognized but couldn't (or wouldn't) name.
These are all relatively harmless and kinda cute. Lately, however...well, not so much. Tuesday morning mom called her friend Sharon 6x in 30 minutes, to tell her dad wasn't at the house. Sharon said he was, mom insisted he wasn't. Then she turned around and he was at the table, where he'd been. Mom said "OH! You're home!" and he said "I've been home. Right here. You were holding my hand just a little while ago." My mother replied with "Oh no, that wasn't you. That was a strange man." My heart broke on my father's behalf when he told me this, even though he sounded like he thought it was funny. I think he was trying to MAKE it be funny - oh look, ha ha, your mother is so funny. Her memory is going and her attention span is so short, she can't even remember 10 minutes ago! The other day she got the shakes from the meds, forgot she was holding a bowl of cereal, and dumped it on the floor.
Later, the same day as the "strange man" comment, dad was talking to the hospice nurse on the phone in another room. When he got off the phone, mom wanted to know if he'd been talking to me. He said he hadn't and she said "are you sure? I heard you..." to which he replied "I wasn't, and I was in the other room so you couldn't have even heard me." Mom's reply? "Yes I did. I heard you through my pillow!"
It's an understatement to say I'm worried. I called hospice, to see if this could be a side effect of the methodone or if the cancer is spreading to her brain and we're seeing the beginning stages of dementia. They said it could be either. Gee, thanks for the help y'all. I don't know that I'm equipped to deal with dementia. Talking to mom these days is like trying to talk to a child, or someone very slow. Sickness, depression, anxiety, sadness...this I can deal with. Dementia, my mother being taken away from me twice? I don't know. I just...don't. What will I do if she doesn't recognize me some day? What will I do if she turns violent? What will I do?
This one involves mom's state of mind, which means it might end up long.
Mom's methodone dosage has been upped from one tablet twice a day to two tablets twice a day, and her hallucinations have increased with the dosage. She's had a few funny ones: There was one about 3 "box people" named Faith, Love and Hungry. She made dad feed hungry (scrambled eggs!) and he became Happy. Dad wouldn't let her go for a walk with them, though, so they went away. I found THAT one interesting, because Faith, Love and Joy (happy) are three of the "fruits of the Spirit" and my mother is very religious. I think they might have been angels, come to take her, but that the family isn't ready yet...jmo, of course. Then she had another about a reindeer named Jingle Bells, and the neighbors had reindeer who ran away to my parents house and were now mad at my parents because they paid their reindeer more than the neighbors did. That one made no sense. While I was there, she heard flute music...something she recognized but couldn't (or wouldn't) name.
These are all relatively harmless and kinda cute. Lately, however...well, not so much. Tuesday morning mom called her friend Sharon 6x in 30 minutes, to tell her dad wasn't at the house. Sharon said he was, mom insisted he wasn't. Then she turned around and he was at the table, where he'd been. Mom said "OH! You're home!" and he said "I've been home. Right here. You were holding my hand just a little while ago." My mother replied with "Oh no, that wasn't you. That was a strange man." My heart broke on my father's behalf when he told me this, even though he sounded like he thought it was funny. I think he was trying to MAKE it be funny - oh look, ha ha, your mother is so funny. Her memory is going and her attention span is so short, she can't even remember 10 minutes ago! The other day she got the shakes from the meds, forgot she was holding a bowl of cereal, and dumped it on the floor.
Later, the same day as the "strange man" comment, dad was talking to the hospice nurse on the phone in another room. When he got off the phone, mom wanted to know if he'd been talking to me. He said he hadn't and she said "are you sure? I heard you..." to which he replied "I wasn't, and I was in the other room so you couldn't have even heard me." Mom's reply? "Yes I did. I heard you through my pillow!"
It's an understatement to say I'm worried. I called hospice, to see if this could be a side effect of the methodone or if the cancer is spreading to her brain and we're seeing the beginning stages of dementia. They said it could be either. Gee, thanks for the help y'all. I don't know that I'm equipped to deal with dementia. Talking to mom these days is like trying to talk to a child, or someone very slow. Sickness, depression, anxiety, sadness...this I can deal with. Dementia, my mother being taken away from me twice? I don't know. I just...don't. What will I do if she doesn't recognize me some day? What will I do if she turns violent? What will I do?
Wednesday, July 30, 2008
Crying Wolf
The trip to mom's went ok, for the most part. We got a lot accomplished, as far as clearing out my room went. My sister and I sat and listed to the hospice people be as comforting and vague as they possibly could. They did, however, give us some booklets to read - hopefully I'll be getting my own copy soon. I read them at my parents house, but I want them here, where I can access them when I need to. There was also a poem in the back of two of the books, both of which almost made me burst into tears. When I get them, I'll post them.
According to the "very flexible timeline" that the books put forth, mom has between one and three months. Dad thinks a month and a half, mom says three. Either way...before the end of the year. This information, along with a half-assed comment that mom made about me skipping a semester, made me re-evaluate school. There were a few days of intense discussion around here that culminated in me deciding to just talk to my profs before classes start - see what they think will happen if I miss a few weeks. Will I be able to keep up? Will they be willing to send me my assignments so I can try?
Today I talked to mom and that whole discussion might very well have been moot. Her kidneys are shutting down. The doc is going to try her on a new diuretic to see if they can jumpstart them, but if they can't then I don't know what they'll do. I suggested dialysis, until the rest of her body is ready to go, but mom says she can't think that far ahead. My sister is supposed to be going down in a little less than three weeks and mom said "I might be dead by then" which is what prompted the whole kidney conversation.
I am going to try and go down this weekend, since I don't have to work on Monday. I'll go when I get off work on Saturday. I just don't know how long I can keep doing that. The lead TA at our other office put in his resignation, two weeks ending on the 7th. Until school starts, I can take all his shifts so that they're covered - we're not busy enough at my office that my boss HAS to have me and they desperately need me at the other one, so off I go. Once classes start, though, they'd better have someone in place or they're going to be SOL. If mom dies, though, I'll need the time to go down there and they'll be SOL anyways. As horrible as this sounds, mom being gone in a few weeks would actually be the best timing possible...if one can truly have a "best time possible" to die.
Here's where crying wolf comes in: Husband says I should tell my boss and my regional about this latest crisis. I feel like I'm saying "Mom has six months. No wait, now it's closer to 2-3. Oh wait - her kidneys are going and it might be only a few weeks. Oh - nevermind, they solved that crisis and her kidneys are going again...we're back to the 3 month mark. Oh - another crisis has popped up...." Well, you get the idea. On the other hand, if I DON'T tell them then they have no time to prepare and are caught in the lurch. I know death isn't SUPPOSED to be plannable, but if at all possible...head up is nice. I just don't want them to roll their eyes and say "here she goes again...wonder if her mother will actually die this time."
My outside is relatively calm - I'm fidgety, and typing like a mad woman, but I'm relatively calm. The inside, however, has been reduced to a gibbering mass. I want to flee, but I have no place to flee too. I want to call everyone, but I don't really want to talk about it. I feel like I'm spinning in circles and it fucking sucks.
According to the "very flexible timeline" that the books put forth, mom has between one and three months. Dad thinks a month and a half, mom says three. Either way...before the end of the year. This information, along with a half-assed comment that mom made about me skipping a semester, made me re-evaluate school. There were a few days of intense discussion around here that culminated in me deciding to just talk to my profs before classes start - see what they think will happen if I miss a few weeks. Will I be able to keep up? Will they be willing to send me my assignments so I can try?
Today I talked to mom and that whole discussion might very well have been moot. Her kidneys are shutting down. The doc is going to try her on a new diuretic to see if they can jumpstart them, but if they can't then I don't know what they'll do. I suggested dialysis, until the rest of her body is ready to go, but mom says she can't think that far ahead. My sister is supposed to be going down in a little less than three weeks and mom said "I might be dead by then" which is what prompted the whole kidney conversation.
I am going to try and go down this weekend, since I don't have to work on Monday. I'll go when I get off work on Saturday. I just don't know how long I can keep doing that. The lead TA at our other office put in his resignation, two weeks ending on the 7th. Until school starts, I can take all his shifts so that they're covered - we're not busy enough at my office that my boss HAS to have me and they desperately need me at the other one, so off I go. Once classes start, though, they'd better have someone in place or they're going to be SOL. If mom dies, though, I'll need the time to go down there and they'll be SOL anyways. As horrible as this sounds, mom being gone in a few weeks would actually be the best timing possible...if one can truly have a "best time possible" to die.
Here's where crying wolf comes in: Husband says I should tell my boss and my regional about this latest crisis. I feel like I'm saying "Mom has six months. No wait, now it's closer to 2-3. Oh wait - her kidneys are going and it might be only a few weeks. Oh - nevermind, they solved that crisis and her kidneys are going again...we're back to the 3 month mark. Oh - another crisis has popped up...." Well, you get the idea. On the other hand, if I DON'T tell them then they have no time to prepare and are caught in the lurch. I know death isn't SUPPOSED to be plannable, but if at all possible...head up is nice. I just don't want them to roll their eyes and say "here she goes again...wonder if her mother will actually die this time."
My outside is relatively calm - I'm fidgety, and typing like a mad woman, but I'm relatively calm. The inside, however, has been reduced to a gibbering mass. I want to flee, but I have no place to flee too. I want to call everyone, but I don't really want to talk about it. I feel like I'm spinning in circles and it fucking sucks.
Friday, July 25, 2008
Ramblings
I'm not sure how much sense this post is going to make. There's so much in my head that needs to get out, so I'm probably going to ramble. Where to start? Let's see...
Mom was allergic to the oxycontin, so she couldn't take that. Instead, they put her on methadone - you know, the stuff they give people who are getting off heroin. Yeah, THAT stuff. At any rate, it seems to be working pretty well. The first day she was fuzzy as all fuck, but after that she sounded better than she has in weeks.
Two days ago she woke up very dizzy and unstable. She had to use her walker all day, because she just couldn't walk. It cleared up a bit after she ate, which indicates it was a blood sugar issue. Mom said "I have the feeling that I'll end up with some form of diabetes before this is over. I think my pancreas is giving out due to all the pressure on it." It's times like this when I think mom really doesn't get what's happening. She'll have a complete system shutdown as the cancer spreads to each of her organs. Anything that can go wrong when an organ fails, will. Diabetes will be the LEAST of her problems as this thing snowballs...but I'm not sure she gets that. Maybe she just can't think about it.
Yesterday she couldn't breath. She called me, sounding really out of it, and it took me a few minutes to figure out what she was trying to tell me. (Apparently my father was trying to lose at his online Omaha Poker game, in case he had to take her to the hospital, but he just couldn't lose!) Hospice finally came to the house to check on her and call the hospital to see if they could get her in for a CAT and a periocentesis. I was very proud of my father - the man who can't pronounce c'est la vie no matter how often he sees it managed to correctly pronounce periocentesis AND tell me what it was. Anyways, I called last night to see if they fit her in...nope. As a matter of fact, they can't get her in until MONDAY. My mother can't take more than a few steps without puffing like an asthmatic, she hurts pretty bad, sounds like shit...and they can't manage to squeeze her in for a CAT until Monday. I hope she doesn't asphyxiate...
When I was talking to mom last night, she suggested that I might skip this semester of school. Talk about being blindsided! Mom has refused to even let me think of missing a day to come and see her, or dropping out to take care of her...until now. I don't know what to do with this. I've already got an application for the FMLA leave that I'm working on, just in case I have to go take care of her. Dad needs a break sometimes, you know? There are so many ups and downs to taking a semester off. I tried to list them, but I can't seem to find all of them this morning. I blame the lack of sleep. I managed to remember these:
Pros:
The lead TA at one of our offices quit, so I'd have more time to pick up the slack, which means more hours for me.
I would be available to take care of mom whenever I was needed - no working around school.
I"m feeling burnt out as it is.
I would also be able to take care of dad for a while, without having to worry about school and work.
Cons:
We have been planning on me going full-time in January - all the finances are set up that way. If I take time off, we may have to use savings...and then we wouldn't have any for while I was in school, which means finances could get royally fucked.
Mom may NOT die while I'm out of school, which means I'd still have to deal with it all when I go back anyways and it would have all been for naught.
I'm currently on a special dispensation for my financial aid - they weren't going to give it to me because I have too many credits, but if I promise to graduate in december they'll let me have it. If I don't, none for the following semester. (I will talk to them about extenuating circumstances...)
I'm going to my parent's house tonight, as is my sister. Tomorrow mom is having a hospice/social worker come to the house to talk to us, answer any questions we have and tell us what we can expect. (I hope we don't get the "Cancer affects everyone differently so we don't really know what to expect" stock line that they give - I may strangle someone.) Aaron and I will decide after that what I'm going to do about school. If it were him, he'd just do it and get it out of the way, and if mom dies during the school year, he'd deal with the special dispensation then. Part of me thinks that's a good idea, part of me thinks that I really don't want to battle the college at the same time I'm trying to deal with everything else. He says that he promises not to think any less of me for whatever way I decide to go - he knows what he would probably do, but this is a very personal decision that he can't really help me with. I know this...but I also know that it could very well screw things up for both of us, so there's a lot riding on me making the right decision.
I think I'm also going to make an appt to see my old counselor from the beginning of the year. I am ill-equipped to make these decisions on my own, and being paralyzed because of options doesn't do any of us any good. Ok - I have to go to work. I'll probably update again after the weekend, assuming I have the energy to get my thoughts out.
Mom was allergic to the oxycontin, so she couldn't take that. Instead, they put her on methadone - you know, the stuff they give people who are getting off heroin. Yeah, THAT stuff. At any rate, it seems to be working pretty well. The first day she was fuzzy as all fuck, but after that she sounded better than she has in weeks.
Two days ago she woke up very dizzy and unstable. She had to use her walker all day, because she just couldn't walk. It cleared up a bit after she ate, which indicates it was a blood sugar issue. Mom said "I have the feeling that I'll end up with some form of diabetes before this is over. I think my pancreas is giving out due to all the pressure on it." It's times like this when I think mom really doesn't get what's happening. She'll have a complete system shutdown as the cancer spreads to each of her organs. Anything that can go wrong when an organ fails, will. Diabetes will be the LEAST of her problems as this thing snowballs...but I'm not sure she gets that. Maybe she just can't think about it.
Yesterday she couldn't breath. She called me, sounding really out of it, and it took me a few minutes to figure out what she was trying to tell me. (Apparently my father was trying to lose at his online Omaha Poker game, in case he had to take her to the hospital, but he just couldn't lose!) Hospice finally came to the house to check on her and call the hospital to see if they could get her in for a CAT and a periocentesis. I was very proud of my father - the man who can't pronounce c'est la vie no matter how often he sees it managed to correctly pronounce periocentesis AND tell me what it was. Anyways, I called last night to see if they fit her in...nope. As a matter of fact, they can't get her in until MONDAY. My mother can't take more than a few steps without puffing like an asthmatic, she hurts pretty bad, sounds like shit...and they can't manage to squeeze her in for a CAT until Monday. I hope she doesn't asphyxiate...
When I was talking to mom last night, she suggested that I might skip this semester of school. Talk about being blindsided! Mom has refused to even let me think of missing a day to come and see her, or dropping out to take care of her...until now. I don't know what to do with this. I've already got an application for the FMLA leave that I'm working on, just in case I have to go take care of her. Dad needs a break sometimes, you know? There are so many ups and downs to taking a semester off. I tried to list them, but I can't seem to find all of them this morning. I blame the lack of sleep. I managed to remember these:
Pros:
The lead TA at one of our offices quit, so I'd have more time to pick up the slack, which means more hours for me.
I would be available to take care of mom whenever I was needed - no working around school.
I"m feeling burnt out as it is.
I would also be able to take care of dad for a while, without having to worry about school and work.
Cons:
We have been planning on me going full-time in January - all the finances are set up that way. If I take time off, we may have to use savings...and then we wouldn't have any for while I was in school, which means finances could get royally fucked.
Mom may NOT die while I'm out of school, which means I'd still have to deal with it all when I go back anyways and it would have all been for naught.
I'm currently on a special dispensation for my financial aid - they weren't going to give it to me because I have too many credits, but if I promise to graduate in december they'll let me have it. If I don't, none for the following semester. (I will talk to them about extenuating circumstances...)
I'm going to my parent's house tonight, as is my sister. Tomorrow mom is having a hospice/social worker come to the house to talk to us, answer any questions we have and tell us what we can expect. (I hope we don't get the "Cancer affects everyone differently so we don't really know what to expect" stock line that they give - I may strangle someone.) Aaron and I will decide after that what I'm going to do about school. If it were him, he'd just do it and get it out of the way, and if mom dies during the school year, he'd deal with the special dispensation then. Part of me thinks that's a good idea, part of me thinks that I really don't want to battle the college at the same time I'm trying to deal with everything else. He says that he promises not to think any less of me for whatever way I decide to go - he knows what he would probably do, but this is a very personal decision that he can't really help me with. I know this...but I also know that it could very well screw things up for both of us, so there's a lot riding on me making the right decision.
I think I'm also going to make an appt to see my old counselor from the beginning of the year. I am ill-equipped to make these decisions on my own, and being paralyzed because of options doesn't do any of us any good. Ok - I have to go to work. I'll probably update again after the weekend, assuming I have the energy to get my thoughts out.
Tuesday, July 15, 2008
Bring on the drugs, baby!
Mom heard about a new chemo, called "warmed chemo". She went to talk to the oncologist about it yesterday. Apparently, it's for use in the abdominal cavity if the cancer hasn't spread. For example, if there was a spot on her liver, they could use it there. Essentially, they cut you open and apply the chemo directly to the spot. Doesn't sound pleasant to me, and most people who have this type of chemo end up with peritonitis. Also not pleasant. These things are beside the point, because mom can't do it.
The cancer is spreading again. They found it in her liver and lungs. The hydrocodone she's been taking is no longer effective, so the doc is now giving her oxycontin. If that doesn't work, it's off to happy happy morphine land for her. She's looking into starting hospice, because they can't put her on the morphine unless she's in hospice care.
Mom says "I'm starting to feel discomfort around my liver." Discomfort?! I know my mother - if she's mentioning it, she feels like hell and hurts very much. She has a high pain tolerance, way higher than mine. This is the woman who drove herself 20 miles to the hospital with a rag around her finger after she pulled the tip of her index finger off! Evidence of this pain? The drugs they're giving her. These are end stage drugs, from what I can figure out.
The train is rolling, and it's gaining speed. Not that I didn't expect it to - cancer grows exponentially...the bigger it gets, the faster it grows. If I keep thinking of it in terms of biology, I'm ok. Once I start thinking about what's actually happening...not so much. I feel like I'm in shock. I don't know what to say to mom, what to do, how to act. I'm going down there next weekend and I don't know what to expect. I'm scared, I'm worried...and you're all I've got. And my husband, but...I'm trying to save him for when I REALLY fall apart.
Oh mommy...what am I going to do without you?
The cancer is spreading again. They found it in her liver and lungs. The hydrocodone she's been taking is no longer effective, so the doc is now giving her oxycontin. If that doesn't work, it's off to happy happy morphine land for her. She's looking into starting hospice, because they can't put her on the morphine unless she's in hospice care.
Mom says "I'm starting to feel discomfort around my liver." Discomfort?! I know my mother - if she's mentioning it, she feels like hell and hurts very much. She has a high pain tolerance, way higher than mine. This is the woman who drove herself 20 miles to the hospital with a rag around her finger after she pulled the tip of her index finger off! Evidence of this pain? The drugs they're giving her. These are end stage drugs, from what I can figure out.
The train is rolling, and it's gaining speed. Not that I didn't expect it to - cancer grows exponentially...the bigger it gets, the faster it grows. If I keep thinking of it in terms of biology, I'm ok. Once I start thinking about what's actually happening...not so much. I feel like I'm in shock. I don't know what to say to mom, what to do, how to act. I'm going down there next weekend and I don't know what to expect. I'm scared, I'm worried...and you're all I've got. And my husband, but...I'm trying to save him for when I REALLY fall apart.
Oh mommy...what am I going to do without you?
Wednesday, June 25, 2008
Freight Train
Mom has reached the "painful to eat/sleep/breathe" stage again and is looking like she's 6 months pregnant. She told me it feels like her liver is sloshing around when they go over bumps. Dad made her go to the doc last week. Doc checked her CA125 levels again (elevated even more..shock) and decided to send her in for a CAT scan, to see how much fluid she has in her abdominal cavity. She had her CAT scan on Monday and I found out the results yesterday.
The cancer is spreading - they can actually see it now. There is fluid, but not enough to drain. Why? Because it's being absorbed into the surrounding tissue, which is hardening.
Freight trains, people.
When she was first diagnosed with ovarian cancer, her tumor was the size of a baseball. Two days later, it was the size of a cantaloupe. TWO DAYS. According to her doc, they caught it as early as they could have. Makes sense, since cancer grows exponentially. First one cell, then two, then four, eight...you get the idea. The bigger it gets the faster it grows. And now, finally, they can actually see the cancer in the epithelial lining of the abdomen. This, combined with the fibrosis of the tissue, makes me think the end is racing towards us.
I don't know what to expect, except the obvious. I don't know what to look for, watch for, so that I'm not caught totally off guard. I'm 100% certain that it won't be as simple as her not waking up the next morning - oh no. There will be pain, and there will be drugs. I know my mother, though, and she'll tough it out as long as she can before breaking down to take drugs. Once she does, how long does she have? No one will even venture a guess, which pisses me right the fuck off. You hear people say all the time "the docs gave me 6 months/6 weeks/1 year to live" and mom's docs won't even hazard a guess. I know that often the guess is wrong, because it IS just a guess and the body has it's own timeline...but at least it would give us a starting point. If cancer grows exponentially there should be a way to figure out how fast it's growing and predict it's continued growth rate. They have a record of how quickly her CA125 levels are going up - it shouldn't be hard to figure out the formula involved and go from there.
I don't know where to go for information. I'm an information whore - the more I have, the better I do. Tell me what to expect, what to do, where to go...and I'm good. I'm equipped to deal with things a little better. Leave me adrift, with no idea what's going on? I freeze. I can't do anything. I don't need exacts, but an idea would be nice.
Poor husband...I ranted for a while last night and he just hugged me. After a few minutes he said "I'm sorry I don't know what to say or do. I don't have any answers for you and I'm so sorry." I told him he was doing EXACTLY what I needed - letting me vent, without taking me seriously when I say things like "Ok, so ovarian cancer feeds off estrogen. Can't they just give her estrogen to speed things up and get it over with?" He knows I don't really want my mother to die, but that I don't want her to suffer any longer than she has to. He initially started the logic route "no, honey, they can't because it's assisted suicide and that's illegal" which earned him a response of "what if we promise not to sue? if she writes a notarized letter?" I think that's when he realized what was coming and just stopped talking for a bit. I have no real life friends I feel I can really vent to on this - yes, they'll listen and they'll hug me and they'll love me/cry with me/whathaveyou...but I also fear they will try to HELP and they can't. I don't want logic, I don't want empty platitudes. I just want hugs.
Husband also understand that I feel helpless. I can't even rage at anyone - there's no one to blame, no one to bitch at and say "YOU! FIX THIS!" I can't blame the doc who did her ovarian surgery for not getting all the cells - I know how tiny cells are and how impossible it is to get all of them. I can't blame the radiation or the chemo for not doing it's job, because it did...for a while. She was a year and a half without cancer. I can't rant at mom like I usually do when something is unfair - I don't have that right. And I can't be melodramatic, which is my other recourse, because that just seems wrong and flippant. My two armors - rage and humor - have been stripped from me and I'm totally defenseless against anything coming my way. I feel naked and very pissed off.
The cancer is spreading - they can actually see it now. There is fluid, but not enough to drain. Why? Because it's being absorbed into the surrounding tissue, which is hardening.
Freight trains, people.
When she was first diagnosed with ovarian cancer, her tumor was the size of a baseball. Two days later, it was the size of a cantaloupe. TWO DAYS. According to her doc, they caught it as early as they could have. Makes sense, since cancer grows exponentially. First one cell, then two, then four, eight...you get the idea. The bigger it gets the faster it grows. And now, finally, they can actually see the cancer in the epithelial lining of the abdomen. This, combined with the fibrosis of the tissue, makes me think the end is racing towards us.
I don't know what to expect, except the obvious. I don't know what to look for, watch for, so that I'm not caught totally off guard. I'm 100% certain that it won't be as simple as her not waking up the next morning - oh no. There will be pain, and there will be drugs. I know my mother, though, and she'll tough it out as long as she can before breaking down to take drugs. Once she does, how long does she have? No one will even venture a guess, which pisses me right the fuck off. You hear people say all the time "the docs gave me 6 months/6 weeks/1 year to live" and mom's docs won't even hazard a guess. I know that often the guess is wrong, because it IS just a guess and the body has it's own timeline...but at least it would give us a starting point. If cancer grows exponentially there should be a way to figure out how fast it's growing and predict it's continued growth rate. They have a record of how quickly her CA125 levels are going up - it shouldn't be hard to figure out the formula involved and go from there.
I don't know where to go for information. I'm an information whore - the more I have, the better I do. Tell me what to expect, what to do, where to go...and I'm good. I'm equipped to deal with things a little better. Leave me adrift, with no idea what's going on? I freeze. I can't do anything. I don't need exacts, but an idea would be nice.
Poor husband...I ranted for a while last night and he just hugged me. After a few minutes he said "I'm sorry I don't know what to say or do. I don't have any answers for you and I'm so sorry." I told him he was doing EXACTLY what I needed - letting me vent, without taking me seriously when I say things like "Ok, so ovarian cancer feeds off estrogen. Can't they just give her estrogen to speed things up and get it over with?" He knows I don't really want my mother to die, but that I don't want her to suffer any longer than she has to. He initially started the logic route "no, honey, they can't because it's assisted suicide and that's illegal" which earned him a response of "what if we promise not to sue? if she writes a notarized letter?" I think that's when he realized what was coming and just stopped talking for a bit. I have no real life friends I feel I can really vent to on this - yes, they'll listen and they'll hug me and they'll love me/cry with me/whathaveyou...but I also fear they will try to HELP and they can't. I don't want logic, I don't want empty platitudes. I just want hugs.
Husband also understand that I feel helpless. I can't even rage at anyone - there's no one to blame, no one to bitch at and say "YOU! FIX THIS!" I can't blame the doc who did her ovarian surgery for not getting all the cells - I know how tiny cells are and how impossible it is to get all of them. I can't blame the radiation or the chemo for not doing it's job, because it did...for a while. She was a year and a half without cancer. I can't rant at mom like I usually do when something is unfair - I don't have that right. And I can't be melodramatic, which is my other recourse, because that just seems wrong and flippant. My two armors - rage and humor - have been stripped from me and I'm totally defenseless against anything coming my way. I feel naked and very pissed off.
Saturday, May 24, 2008
The inevitable
I know there hasn't been an update in over a month. There's a very good reason for this: my parents have been on a trip around the states since the 18th of April. They just got home on Monday. They were planning on taking this trip when dad retired, but given the circumstances they decided to go earlier. They actually had a lot of fun and mom did pretty well. She did have to have dad give her both of her B-12 shots (they help her feel better, have a little more energy) and there were some issues with walking, but overall it was fun. They're glad to be home, though. Mom was starting to feel pretty run down near the end and was having more trouble breathing, which led her to believe that she was filling up with fluid again.
She was right.
She went to the doc on Wednesday to get her blood drawn, so they could see what her CA-125 count was. The results came back yesterday and they were elevated...which we already figured would happen. Her doc doesn't want to do a CAT scan right now, since they did one just before my parents left for vacation. The plan? Wait until mom gets more uncomfortable with the fluid build-up, until she can't move or breathe without pain. At that point, she'll come in for a CAT and they can also drain the fluid. Then? Wait until she fills with fluid again, then they can drain it again. Lather, rinse, repeat until she dies. The cancer is in the epithelial lining of her abdomenal cavity. The only treatment is chemo and she's not willing to do it anymore - and I don't blame her, I don't.
I just wish there was a way she didn't have to suffer. I wish there was a magic pill she could take that would just end it. I don't like the idea of my mother having to wait until she's in so much pain that it hurts to move, or breathe. She can't take 10 steps before she has to sit down and catch her breath, because the fluid in her abdomen is pressing on her lungs and they can't expand properly. Having just taken physiology class I now know more than ever just how the body works, and how delicate the balance is in the system. This is going to wreak havoc before it's done and I don't know how I can watch this happen without going raging insane.
She was right.
She went to the doc on Wednesday to get her blood drawn, so they could see what her CA-125 count was. The results came back yesterday and they were elevated...which we already figured would happen. Her doc doesn't want to do a CAT scan right now, since they did one just before my parents left for vacation. The plan? Wait until mom gets more uncomfortable with the fluid build-up, until she can't move or breathe without pain. At that point, she'll come in for a CAT and they can also drain the fluid. Then? Wait until she fills with fluid again, then they can drain it again. Lather, rinse, repeat until she dies. The cancer is in the epithelial lining of her abdomenal cavity. The only treatment is chemo and she's not willing to do it anymore - and I don't blame her, I don't.
I just wish there was a way she didn't have to suffer. I wish there was a magic pill she could take that would just end it. I don't like the idea of my mother having to wait until she's in so much pain that it hurts to move, or breathe. She can't take 10 steps before she has to sit down and catch her breath, because the fluid in her abdomen is pressing on her lungs and they can't expand properly. Having just taken physiology class I now know more than ever just how the body works, and how delicate the balance is in the system. This is going to wreak havoc before it's done and I don't know how I can watch this happen without going raging insane.
Monday, April 7, 2008
CAT test results
So this is a mixed bag of good and bad news, but I am choosing to focus most on the good aspect of this.
Mom had a CAT scan done on Thursday, to look at her liver and see how things were progressing. They were able to get a clearer look at the lesions on her liver...and have decided that she does not haveliver cancer. The "attenuations" or scarring, is not what you would expect to see in someone with liver cancer. The doctor thinks it might just be scarring from when she had her gallbladder removed last winter. WOO!
The downside is that this puts us back at square one: knowing that she has cancer but not knowing where it is. Her CA125 still indicates that she has cancer of the ovarian type somewhere. She's supposed to be tested again in a few weeks, to see what those numbers are doing, but she's going to wait until about mid-May. She and my dad are leaving on the 18th to go on a month-long trip around the States. I know that they're spending a few days in D.C. looking at monuments. They're going to try and take in a Red Sox game. They'll be visiting lots of family while they're back East. This is something they were planning on doing when dad retired but are now doing it sooner for obvious reasons.
I'm choosing to be happy that she doesn't have liver cancer. From what I know of the body and cancers, liver is one of the more painful areas to get cancer. The liver controls over 200 functions in the body - that's 200 things to have go haywire before the end...which is very painful in and of itself, just given the nature of the disease. This is not to say that other types of cancer are not painful or deadly, for they are, it's just that cancer is one of the more painful and deadly types. It can't be treated. Mom probably won't start treatments again anyhow...but it's ok.
Mom had a CAT scan done on Thursday, to look at her liver and see how things were progressing. They were able to get a clearer look at the lesions on her liver...and have decided that she does not haveliver cancer. The "attenuations" or scarring, is not what you would expect to see in someone with liver cancer. The doctor thinks it might just be scarring from when she had her gallbladder removed last winter. WOO!
The downside is that this puts us back at square one: knowing that she has cancer but not knowing where it is. Her CA125 still indicates that she has cancer of the ovarian type somewhere. She's supposed to be tested again in a few weeks, to see what those numbers are doing, but she's going to wait until about mid-May. She and my dad are leaving on the 18th to go on a month-long trip around the States. I know that they're spending a few days in D.C. looking at monuments. They're going to try and take in a Red Sox game. They'll be visiting lots of family while they're back East. This is something they were planning on doing when dad retired but are now doing it sooner for obvious reasons.
I'm choosing to be happy that she doesn't have liver cancer. From what I know of the body and cancers, liver is one of the more painful areas to get cancer. The liver controls over 200 functions in the body - that's 200 things to have go haywire before the end...which is very painful in and of itself, just given the nature of the disease. This is not to say that other types of cancer are not painful or deadly, for they are, it's just that cancer is one of the more painful and deadly types. It can't be treated. Mom probably won't start treatments again anyhow...but it's ok.
Thursday, April 3, 2008
Stable
Things are stable right now, hence the lack of posts. I'm emotionally stable for now, because there are no hits coming. I'm also on amytriptaline, which seems to be doing wonders for me in the stability department. Got into a huge fight with my brother the other night, though. Whoo-doggie! I haven't had a fight like THAT since my ex-husband and I first got together. Lesson learned: when brother calls and isn't being rational, suspect alcohol is involved and tell him to call back when he's sober. Arguing with a drunk person is not worth it.
What was the fight over, you might ask? Well, my brother has a daughter who lives with his ex-wife in MO. Said ex-wife doesn't want my idiot brother to have any contact with their daughter - and I don't blame her. Not that he could, considering his latest crime, but he seems to think that someday he'll be able to. I laugh. Anyways, my mother is the only one who has their address and he wants it. Or rather, he wants either our sister or I to have it before mom dies. I told him I would talk to mom, who could talk to the ex-wife and if it was ok I would handle it. He started bitching at me that he has legal rights - so go through legal channels, jackass. I'm not about to give him the address so he can stalk them again. Nope. Not without her permission. When I told mom all this, she said she plans on giving one of us girls the address when the time comes. It's in her address book - it's not like she's hiding it or anything. She just doesn't want to put my sister or I in the position of having to withhold the information any sooner than she has to, which I appreciate. Stupid brother was also going on and on and on about how lonely he is, how emotional he's getting, how no one cares about him, how kind and concerned and out there he's been for the family (snort), and how he feels he has something (and nothing) to prove to everyone. He started contradicting himself, arguing with me when i pointed it out. I finally hung up on him and had a breakdown of my own. He then called our sister, who called mom, who called me...but I'd turned my phone off because brother kept calling and I didn't want to talk to him. I called mom back the next day and told her what happened - she said "I told your sister I didn't know, but that he was probably drunk and at least you two are talking." I do not want to talk to him anymore. I went 20 years without him in my life and am perfectly content to go another 20.
Mom has a CAT scan today to see how her liver is doing. She'll know the results sometime next week. For now, she feels ok. Really tired and easily worn out, but ok. I am going on a 3-day retreat with her starting next Thursday. Should be interesting. It's called Walk to Emmaus...and that's all we know. One of mom's friends has been but won't tell mom anything about it except "Be prepared for the best experience of your life." We have no idea what to expect. I am a bit nervous - I feel like I'm going to a cult meeting or something. But mom will be there and she won't let them do anything to me. :) We're not allowed to have our cell phones, a sponsor is picking us up so we don't have a car (although I am allowed to take mine simply because I have to go straight to home on Sunday and it will cut an hour off my time). There will be no showers. We can be in our pj's the whole time if we want to. Sleeping on a cot, air mattress, sleeping bag - whatever you bring. Like I said - interesting. My sister doesn't want to go because "retreats aren't her thing" she says. Like they're mine? For me, it's a chance to bond with mom, spend some time with her before the end.
I'm doing ok. I'll try to let you know how the retreat goes - provided I don't have to sign a NDA or something. :)
What was the fight over, you might ask? Well, my brother has a daughter who lives with his ex-wife in MO. Said ex-wife doesn't want my idiot brother to have any contact with their daughter - and I don't blame her. Not that he could, considering his latest crime, but he seems to think that someday he'll be able to. I laugh. Anyways, my mother is the only one who has their address and he wants it. Or rather, he wants either our sister or I to have it before mom dies. I told him I would talk to mom, who could talk to the ex-wife and if it was ok I would handle it. He started bitching at me that he has legal rights - so go through legal channels, jackass. I'm not about to give him the address so he can stalk them again. Nope. Not without her permission. When I told mom all this, she said she plans on giving one of us girls the address when the time comes. It's in her address book - it's not like she's hiding it or anything. She just doesn't want to put my sister or I in the position of having to withhold the information any sooner than she has to, which I appreciate. Stupid brother was also going on and on and on about how lonely he is, how emotional he's getting, how no one cares about him, how kind and concerned and out there he's been for the family (snort), and how he feels he has something (and nothing) to prove to everyone. He started contradicting himself, arguing with me when i pointed it out. I finally hung up on him and had a breakdown of my own. He then called our sister, who called mom, who called me...but I'd turned my phone off because brother kept calling and I didn't want to talk to him. I called mom back the next day and told her what happened - she said "I told your sister I didn't know, but that he was probably drunk and at least you two are talking." I do not want to talk to him anymore. I went 20 years without him in my life and am perfectly content to go another 20.
Mom has a CAT scan today to see how her liver is doing. She'll know the results sometime next week. For now, she feels ok. Really tired and easily worn out, but ok. I am going on a 3-day retreat with her starting next Thursday. Should be interesting. It's called Walk to Emmaus...and that's all we know. One of mom's friends has been but won't tell mom anything about it except "Be prepared for the best experience of your life." We have no idea what to expect. I am a bit nervous - I feel like I'm going to a cult meeting or something. But mom will be there and she won't let them do anything to me. :) We're not allowed to have our cell phones, a sponsor is picking us up so we don't have a car (although I am allowed to take mine simply because I have to go straight to home on Sunday and it will cut an hour off my time). There will be no showers. We can be in our pj's the whole time if we want to. Sleeping on a cot, air mattress, sleeping bag - whatever you bring. Like I said - interesting. My sister doesn't want to go because "retreats aren't her thing" she says. Like they're mine? For me, it's a chance to bond with mom, spend some time with her before the end.
I'm doing ok. I'll try to let you know how the retreat goes - provided I don't have to sign a NDA or something. :)
Thursday, February 28, 2008
I'd like to order a breakdown please
and can I have a side order of "feel like a bad person" with that as well? Oh...and to drink I'd like a glass of confusion.
I had a total meltdown last night. It wasn't really a bad day, but there were several little things over the course of this week that just added up. The last straw was only getting 2 hours of work Tuesday and another 2 hours yesterday. If I'm lucky, I'll get 4 hours on Saturday for a whopping total of 8 hours for this week. It's been this way all year. The housing market sucks and a lot of what I do is related to that, so my job sucks too. I got off work and asked my husband if he had time for me to have a breakdown - lucky for him he said yes. So...I went home, laid down on the bed, and sobbed for a good 15 minutes.
Later last night mom called to see how I was. I swear we have the ESP thing going. She always seems to know when I'm having a bad day. I told her I had a meltdown but that I was ok now, and she said "just try to relax. Things always work out." This is going to sound awful, and I feel awful, but I'm really starting to get angry with her for saying that. The anger makes me want to lash out at her, say things I know I'll regret and that will hurt her...such as "well of course they'll work out Mother. They always do. Of course there's a resolution. There always is. Because see, you having cancer 'will work out'. You're going to be dead and you won't have to worry about petty bullshit anymore. You'll be up in Heaven, playing your harp, walking your streets of gold, living in your mansion while I sit down here and worry about my life. You won't have to deal with it any more in 6 months or so." I feel like such a terrible person. I know...anger at someone because they're dying is a normal reaction. That's the kicker - I'm not really angry at her because she has cancer, or because she's dying. Her saying "it will work out" is nothing new - she's always told me that. I know it's just displaced frustration. That knowledge doesn't make me feel any better.
On an up side, her brother told her about a cancer center in Goshen, Indiana that is doing clinical research trials on liver cancer. A man he knows has done the treatment - they initially gave him 6 months and he's now past that and almost cancer free. Mom is going to look into it. If she has to pay for it, she won't do it. She won't have to, though, I'm certain of it. I've participated in clinical trials for stuff before and they usually pay you. They can't take money from their participants as it provides a conflict of interest. She'd have to move to IN for the duration of the trial, and I think she said they provide a place for her to stay...but she's still investigating.
This brings up the confusion and feel bad as well. One side of me is all "YAY! Clinical trials! Cancer goes away! Mom lives! WOOTAGE!" The other side is all "Oh for the love of all that is holy. Stop making me live this rollercoaster. This is the 3rd time you've had cancer in 4 years, but the first time I've actually had to prepare for you to die. Just...get it over with. I can't handle the grieving only to have you yank it away from me, because I know I'll have to do it again. It's like the boy who cried wolf, only you're crying death." I know this is the bitter side of me, the frustrated side. By no means am I ready for my mother to die. I'd like her to stick around for another 20 years. I am torn in two separate selfish directions - go go Gemini! - that of wanting my mom around and that of not wanting to go through all this pain again.
My sister is going to go spend the weekend with mom this weekend. Should be interesting to say the least. Tuesday I think mom is coming up here - dad wants to leave his silver with me so I can sell it for him when the price gets good. I can't wait to see my mommy, but I know it's going to be rough.
It seems that Thursdays are a good day for me to post, as I have several hours between classes. So...look here on Thursday afternoons if not before. :)
I had a total meltdown last night. It wasn't really a bad day, but there were several little things over the course of this week that just added up. The last straw was only getting 2 hours of work Tuesday and another 2 hours yesterday. If I'm lucky, I'll get 4 hours on Saturday for a whopping total of 8 hours for this week. It's been this way all year. The housing market sucks and a lot of what I do is related to that, so my job sucks too. I got off work and asked my husband if he had time for me to have a breakdown - lucky for him he said yes. So...I went home, laid down on the bed, and sobbed for a good 15 minutes.
Later last night mom called to see how I was. I swear we have the ESP thing going. She always seems to know when I'm having a bad day. I told her I had a meltdown but that I was ok now, and she said "just try to relax. Things always work out." This is going to sound awful, and I feel awful, but I'm really starting to get angry with her for saying that. The anger makes me want to lash out at her, say things I know I'll regret and that will hurt her...such as "well of course they'll work out Mother. They always do. Of course there's a resolution. There always is. Because see, you having cancer 'will work out'. You're going to be dead and you won't have to worry about petty bullshit anymore. You'll be up in Heaven, playing your harp, walking your streets of gold, living in your mansion while I sit down here and worry about my life. You won't have to deal with it any more in 6 months or so." I feel like such a terrible person. I know...anger at someone because they're dying is a normal reaction. That's the kicker - I'm not really angry at her because she has cancer, or because she's dying. Her saying "it will work out" is nothing new - she's always told me that. I know it's just displaced frustration. That knowledge doesn't make me feel any better.
On an up side, her brother told her about a cancer center in Goshen, Indiana that is doing clinical research trials on liver cancer. A man he knows has done the treatment - they initially gave him 6 months and he's now past that and almost cancer free. Mom is going to look into it. If she has to pay for it, she won't do it. She won't have to, though, I'm certain of it. I've participated in clinical trials for stuff before and they usually pay you. They can't take money from their participants as it provides a conflict of interest. She'd have to move to IN for the duration of the trial, and I think she said they provide a place for her to stay...but she's still investigating.
This brings up the confusion and feel bad as well. One side of me is all "YAY! Clinical trials! Cancer goes away! Mom lives! WOOTAGE!" The other side is all "Oh for the love of all that is holy. Stop making me live this rollercoaster. This is the 3rd time you've had cancer in 4 years, but the first time I've actually had to prepare for you to die. Just...get it over with. I can't handle the grieving only to have you yank it away from me, because I know I'll have to do it again. It's like the boy who cried wolf, only you're crying death." I know this is the bitter side of me, the frustrated side. By no means am I ready for my mother to die. I'd like her to stick around for another 20 years. I am torn in two separate selfish directions - go go Gemini! - that of wanting my mom around and that of not wanting to go through all this pain again.
My sister is going to go spend the weekend with mom this weekend. Should be interesting to say the least. Tuesday I think mom is coming up here - dad wants to leave his silver with me so I can sell it for him when the price gets good. I can't wait to see my mommy, but I know it's going to be rough.
It seems that Thursdays are a good day for me to post, as I have several hours between classes. So...look here on Thursday afternoons if not before. :)
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