Certain things about hospital life aren't like you'd expect. There's a lot of people with your care in mind, but there are still ways you need to advocate for yourself. Learning to speak up about what I feel I need has been difficult even for a sharp, stubborn bastard like me. I'm surrounded by doctors and experts and it's easy to go with the flow, listen to the statistics and assume everyone has your best interests at heart.
The first incidence of real self-advocation was when I asked them to stop giving me Ativan. I can't prove it, it could be all in my head (har har -- it's an anti-anxiety drug as well as anti-nausea, you see) but I really felt like it was doing more harm than good. I was surprised when my caregivers listened and said things like "you know your body best."
The next thing was poop-related. In my mind it's like CSI: Scott's Colon up ins this place, so I've just been waiting for them to tell me what I need to know about it. I finally had to level with my nurse and say "Listen, there's getting on a good chance of me sharting in my sleep. Can we do something about this?"
The answer was hedged more than I would have liked. Not right away, is the unfortunate answer -- not before some more crack CSI teams (a pun!) investigate. But it started a process that might lead to Immodium, so once again opening my mouth was the right call.
My nurse leveled back with me: if you have an accident, she said, it wouldn't be the end of the world. It wouldn't be your fault. The chemo we gave you has done this to your body and we're here to get you through whatever happens. Small comfort (but some, I guess).
Later that night, my neighbor coded. Code Blue. Now if that isn't something that puts all our wet fart problems into perspective.
Thursday, August 30, 2012
Code Brown
Probably the most invasive thing about living in Superchemoland is that not a single micturation (it means peeing) or bowel movement is allowed to go flushed. All of it must be examined and discussed by a team of doctors, nurses and lab technicians.
Freud teaches us (and his teachings are greatly clarified by followers like Otto Rank, Norman O. Brown and Ernest Becker) that anality is about creatureliness. Culture teaches us early on to feel a sense of privacy and even shame about what comes out of our bodies because such excretions link us via the body to death. Repression of our own mortality means repression of such unpleasant aspects of existence (and focus on the borrowed power that the more grand, heroic symbols of culture offer.)
This isn't to say poop can't be talked about. It should be managed as all anxieties are: with humor and acceptance (and with acceptance, even its own kind of pleasure.) But it's one thing to ask "What was Tigger doing in the toilet?" and another thing to get used to telling a new person every day "I took a shit" so they can essentially clean it up for you.
Childhood feelings about poop do not get unlearned easily. Thankfully, I guess. It should be hard to start sharing your poop with everyone just because someone asks. But until this process is over, it's just one more thing making me long for the comfort and privacy of my own home.
Freud teaches us (and his teachings are greatly clarified by followers like Otto Rank, Norman O. Brown and Ernest Becker) that anality is about creatureliness. Culture teaches us early on to feel a sense of privacy and even shame about what comes out of our bodies because such excretions link us via the body to death. Repression of our own mortality means repression of such unpleasant aspects of existence (and focus on the borrowed power that the more grand, heroic symbols of culture offer.)
This isn't to say poop can't be talked about. It should be managed as all anxieties are: with humor and acceptance (and with acceptance, even its own kind of pleasure.) But it's one thing to ask "What was Tigger doing in the toilet?" and another thing to get used to telling a new person every day "I took a shit" so they can essentially clean it up for you.
Childhood feelings about poop do not get unlearned easily. Thankfully, I guess. It should be hard to start sharing your poop with everyone just because someone asks. But until this process is over, it's just one more thing making me long for the comfort and privacy of my own home.
Wednesday, August 29, 2012
Reboot and Rally
Day Zero: that's what they call it. The superchemo's all gone in (days minus 5 to minus 2) with an extra day just to keep throwing up everything.
Today they bust out that bag of hard-earned half-frozen stem cells and shoot 'em on into me so I can start to recover. Or commence what my doctor calls "the crappy phase." I guess both things are true.
If there's somehow a drop of cancer left in this wretched body, or a cell of it in that bloody bag, I am fucked.
Today they bust out that bag of hard-earned half-frozen stem cells and shoot 'em on into me so I can start to recover. Or commence what my doctor calls "the crappy phase." I guess both things are true.
If there's somehow a drop of cancer left in this wretched body, or a cell of it in that bloody bag, I am fucked.
Monday, August 27, 2012
Nothing
I spoke aloud this morning to -- cancer? chemo? the dark god of pestilence or the supposed supreme one that sits in judgment? I don't know.
I said, "Is that all you got? A little vomit and they give me a popsicle."
I call that a win, bitch.
It's comforting to know that nothing was listening.
I said, "Is that all you got? A little vomit and they give me a popsicle."
I call that a win, bitch.
It's comforting to know that nothing was listening.
Friday, August 24, 2012
The End Is the Beginning: A Super Soundtrack to Superchemo
1. Smashing Pumpkins - The Beginning Is the End Is the Beginning
2. Nine Inch Nails - The Way Out Is Through
3. Abandoned Pools - Blood
4. Dandy Warhols - Rock Bottom
5. Bright Eyes (with Neva Dinova) - Black Comedy
6. Elliott Smith - Oh Well, OK
7. Azure Ray - Rise
8. Sam Roberts - This Wreck of a Life
9. Avett Brothers - Die, Die, Die
10. Jimmie's Chicken Shack - When You Die, You're Dead
11. Bright Eyes - Road to Joy
12. Incubus - Look Alive
13. Beck - Golden Age
14. Citizen Cope - Sideways
15. Blind Melon - Change
16. Conor Oberst - Get-Well-Cards
17. Dandy Warhols - Big Indian
18. Rilo Kiley - A Better Son/Daughter
19. Ben Folds - Not the Same
2. Nine Inch Nails - The Way Out Is Through
3. Abandoned Pools - Blood
4. Dandy Warhols - Rock Bottom
5. Bright Eyes (with Neva Dinova) - Black Comedy
6. Elliott Smith - Oh Well, OK
7. Azure Ray - Rise
8. Sam Roberts - This Wreck of a Life
9. Avett Brothers - Die, Die, Die
10. Jimmie's Chicken Shack - When You Die, You're Dead
11. Bright Eyes - Road to Joy
12. Incubus - Look Alive
13. Beck - Golden Age
14. Citizen Cope - Sideways
15. Blind Melon - Change
16. Conor Oberst - Get-Well-Cards
17. Dandy Warhols - Big Indian
18. Rilo Kiley - A Better Son/Daughter
19. Ben Folds - Not the Same
Thursday, August 23, 2012
Knocking Me Down
There's not really any words. I think I give up on blogging.
Now starts the 4am vital checks, the 5am chemo, the 7am litany of invasive questions. Being tied to a pole by an angry stab in the arm. You don't get privacy, time or dignity. If you're lucky, you just get out.
It's their antiseptic prison, I'm just living in it. If you call this living.
Some day I guess I'll be grateful I'm not dead.
Wednesday, August 8, 2012
Family
Finally had to lose my shit at my mom.
She's been pushing my buttons my whole life anyway. She pretty much invented my buttons in the first place.
When I was 17 she tried to convince a surgeon not to anesthetize me during testicular surgery. Not like, during a pants-on appointment, but as they were pretty much wheeling me to the O.R. with nothing between me and the world but an irrationally one-sided garment.
She told me she didn't like the idea of me being knocked out, which is really her way of saying she doesn't like the idea of her being knocked out. So she was going to ask some questions.
I told her if she was somehow able to convince anyone to even try cutting my balls open while I was awake, I would rabbit.
Thankfully, when she made her pitch, they turned her down. Because doctors know what a TERRIBLE IDEA that is.
Now she is calling family members and telling them things I let my doctor explain to her, but advising them not to mention it to me. Because I don't know yet. She tells them "he hates to talk about it" because the impatience she senses when we talk can't possibly be anything she's doing.
I'm impatient because she is the world's worst listener. She listens to little and hears less. And she likes to talk to me in this tone of doubt almost to the point of indignation. She just can't believe all this chemo they want me to do. Literally. She refuses to believe it. Like I'm doing it for the fucking hell of it.
I wonder: when she talks to her friend or her sister (other people in her life who have cancer), does this fly? Maybe when she says "But why do they want you to do all this chemo?" in that tone, they answer with equal indignation: "I don't know!" Instead of perplexedly stating the obvious: so I don't die.
I am happy to offer that answer (and did), but I don't even understand what could bring someone to ask the question. Why do you think cancer doctors prescribe chemo? I mean if you had to guess.
Then she poo-poo'ed the idea of me taking would could be an equally life-saving medication. Like I was being duped into becoming someone's science experiment. TOO LATE, YOU RETARD.
To read this blog must make it seem like the whole world is soooo bad at relating to me now that I have cancer. That's totally untrue. It's just a shitty situation, being treated differently and being forced to live under cancer's rules. Some people in my life are naturally more intuitive about my needs, and more patient with situations that are unpleasant or unpredictable.
My parents aren't failing in the "Can we come visit you?," "Call us if you ever need a ride anywhere" or "Let us know if you need money" departments. They just had 18 years to make me like them enough to want them around, doing those things, and they biffed it.
My brother's not much better. He really wants to spend time with me, he says. "We can take a day off work and go out on the town and have an adventure. Trust me, it will be so much fun." Does he put that kind of pressure on all his outings? Or does he roll that out just for siblings with cancer who can neither go on carefree adventures nor take any more time off work?
But it was cathartic to blow up, I guess. "Corrective" has also been suggested. With people like that, what else can you do but blow them off or tell them to shut up?
She's been pushing my buttons my whole life anyway. She pretty much invented my buttons in the first place.
When I was 17 she tried to convince a surgeon not to anesthetize me during testicular surgery. Not like, during a pants-on appointment, but as they were pretty much wheeling me to the O.R. with nothing between me and the world but an irrationally one-sided garment.
She told me she didn't like the idea of me being knocked out, which is really her way of saying she doesn't like the idea of her being knocked out. So she was going to ask some questions.
I told her if she was somehow able to convince anyone to even try cutting my balls open while I was awake, I would rabbit.
Thankfully, when she made her pitch, they turned her down. Because doctors know what a TERRIBLE IDEA that is.
Now she is calling family members and telling them things I let my doctor explain to her, but advising them not to mention it to me. Because I don't know yet. She tells them "he hates to talk about it" because the impatience she senses when we talk can't possibly be anything she's doing.
I'm impatient because she is the world's worst listener. She listens to little and hears less. And she likes to talk to me in this tone of doubt almost to the point of indignation. She just can't believe all this chemo they want me to do. Literally. She refuses to believe it. Like I'm doing it for the fucking hell of it.
I wonder: when she talks to her friend or her sister (other people in her life who have cancer), does this fly? Maybe when she says "But why do they want you to do all this chemo?" in that tone, they answer with equal indignation: "I don't know!" Instead of perplexedly stating the obvious: so I don't die.
I am happy to offer that answer (and did), but I don't even understand what could bring someone to ask the question. Why do you think cancer doctors prescribe chemo? I mean if you had to guess.
Then she poo-poo'ed the idea of me taking would could be an equally life-saving medication. Like I was being duped into becoming someone's science experiment. TOO LATE, YOU RETARD.
To read this blog must make it seem like the whole world is soooo bad at relating to me now that I have cancer. That's totally untrue. It's just a shitty situation, being treated differently and being forced to live under cancer's rules. Some people in my life are naturally more intuitive about my needs, and more patient with situations that are unpleasant or unpredictable.
My parents aren't failing in the "Can we come visit you?," "Call us if you ever need a ride anywhere" or "Let us know if you need money" departments. They just had 18 years to make me like them enough to want them around, doing those things, and they biffed it.
My brother's not much better. He really wants to spend time with me, he says. "We can take a day off work and go out on the town and have an adventure. Trust me, it will be so much fun." Does he put that kind of pressure on all his outings? Or does he roll that out just for siblings with cancer who can neither go on carefree adventures nor take any more time off work?
But it was cathartic to blow up, I guess. "Corrective" has also been suggested. With people like that, what else can you do but blow them off or tell them to shut up?
Tuesday, August 7, 2012
I Don't Know What to Say
Recently I've been wondering if maybe I am not forceful enough in my invitations. For example if people suggest visiting me at the hospital or at home after chemo, and I say "that might be good, but I might not be the best company, I'm not sure when is a good time, I can't go out or drink or do anything fun" -- this sounds like some kind of deflection. Like I'm really saying: Back off. Don't intrude on my cancer life.
People don't always know what to say to someone in my situation. They remind me how lucky I am and tell me they know I will be ok. Since the clean PET, some people have even assumed I'm doing great. "You must be so happy." How can they know I'm in the worst of it?
But it shouldn't be so hard to figure out that someone in my situation knows what to say even less. You can't find the right response to suffering, so how should I? I'm just making up this dealing with cancer shit as I go. I know what to say about it even less.
To the point where it's a quandary every time someone asks "How are you doing?"
And they should ask. YOU SHOULD ASK. I just have to figure out how much honesty and detail go into the answer every individual time, on a case by case basis. Repeat the litany of symptoms, side effects and experiences. Answer complicated medical questions. It's exhausting. And I am fresh out of energy for things. (Like refilling my water glass, or fetching a pen. Anemia's a bitch.)
I want to wear a sign that says "Ask me how I'm doing if you like bad news."
Scenario: I call you up and say "What are you doing Friday? Let's hang out." You say sure. Friday rolls around. Surprise! I feel like shit. I call you up and say "Never mind, if you show up I will barf on your face." That's what's going to happen sometimes if you plan in advance with a person who has cancer.
Alternately: I call you up and say "What are you doing right now?" You say "stuff." Welp, guess you're not coming over then.
Or you say "nothing." I make the following sweet pitch: "Want to come to my small, messy apartment and listen to me bitch about my life? Caveat: I might lose my shit."
It's hard to ask people to give up doing something fun to make them commiserate with you. You start to figure "if so-and-so wanted to spend some time bored on my sofa, he'd do it already" -- even though I can rationally ask myself: why would anyone come over uninvited? Or if I make it sound like it's a terrible idea?
When things get shitty, I don't think it matters much what people say. What people do is more important anyway.
People don't always know what to say to someone in my situation. They remind me how lucky I am and tell me they know I will be ok. Since the clean PET, some people have even assumed I'm doing great. "You must be so happy." How can they know I'm in the worst of it?
But it shouldn't be so hard to figure out that someone in my situation knows what to say even less. You can't find the right response to suffering, so how should I? I'm just making up this dealing with cancer shit as I go. I know what to say about it even less.
To the point where it's a quandary every time someone asks "How are you doing?"
And they should ask. YOU SHOULD ASK. I just have to figure out how much honesty and detail go into the answer every individual time, on a case by case basis. Repeat the litany of symptoms, side effects and experiences. Answer complicated medical questions. It's exhausting. And I am fresh out of energy for things. (Like refilling my water glass, or fetching a pen. Anemia's a bitch.)
I want to wear a sign that says "Ask me how I'm doing if you like bad news."
Scenario: I call you up and say "What are you doing Friday? Let's hang out." You say sure. Friday rolls around. Surprise! I feel like shit. I call you up and say "Never mind, if you show up I will barf on your face." That's what's going to happen sometimes if you plan in advance with a person who has cancer.
Alternately: I call you up and say "What are you doing right now?" You say "stuff." Welp, guess you're not coming over then.
Or you say "nothing." I make the following sweet pitch: "Want to come to my small, messy apartment and listen to me bitch about my life? Caveat: I might lose my shit."
It's hard to ask people to give up doing something fun to make them commiserate with you. You start to figure "if so-and-so wanted to spend some time bored on my sofa, he'd do it already" -- even though I can rationally ask myself: why would anyone come over uninvited? Or if I make it sound like it's a terrible idea?
When things get shitty, I don't think it matters much what people say. What people do is more important anyway.
Saturday, August 4, 2012
I Don't Know What to Say (Prologue)
Title of blog post = title of cancer memoir!
Damn, I had the funniest cancer memoir title but I forgot it. Oh well, I thought up another one, it's all good. Better than My Staycation in Hell. I will post other ones in the comments if I think of them. Your suggestions are appreciated!
I totally wrote a couple posts ago (albeit a few months ago) that the plan was ICE chemo until clean PET, then superchemo. But I never blogged about getting that clean PET. Oh well. I got sick of itemizing cancer facts to the point that I didn't even use this outlet to celebrate that win.
Maybe because things are currently the hardest they've ever been and getting worse. I'm anemic to the point that it winds me to walk around the apartment. I don't get out of breath often since I am in exactly the shape I need to be in for my lifestyle. It is disconcerting to be so weak. And neutrapenia continues to shit all over my social life. (Not to mention we have these cherries in the fridge that look so damn delicious.)
Oh, and I'm going absolutely out of my mind. But I think that's a topic for the real post, not the prologue.
Damn, I had the funniest cancer memoir title but I forgot it. Oh well, I thought up another one, it's all good. Better than My Staycation in Hell. I will post other ones in the comments if I think of them. Your suggestions are appreciated!
I totally wrote a couple posts ago (albeit a few months ago) that the plan was ICE chemo until clean PET, then superchemo. But I never blogged about getting that clean PET. Oh well. I got sick of itemizing cancer facts to the point that I didn't even use this outlet to celebrate that win.
Maybe because things are currently the hardest they've ever been and getting worse. I'm anemic to the point that it winds me to walk around the apartment. I don't get out of breath often since I am in exactly the shape I need to be in for my lifestyle. It is disconcerting to be so weak. And neutrapenia continues to shit all over my social life. (Not to mention we have these cherries in the fridge that look so damn delicious.)
Oh, and I'm going absolutely out of my mind. But I think that's a topic for the real post, not the prologue.
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