thanks to all of you who sent wishes and prayers for my little sister. she had a bronch yesterday and goes back for the results today.
the preliminary signs are good. her doctors say her lung capacity has not diminished and that her lungs look perfect. hopefully, the rejection was caught early enough to keep it at bay. she has lost 10 pounds in the past two months, so that's a big deal - esp considering she only weighed 100 pounds to start with. she's back to diet supplements and feeding tubes.
but! there's that silver lining and hopefully it'll turn into a whole silver layer come this afternoon.
of course, she wouldn't be my sister without bringing the drama. so, her new "death bed" wish is to have a baby. she and her boyfriend (who lives on another damned continent) are talking about her getting pregnant before the year's out.
their idea is that she'll have the baby before she's too weak to do so. however, her body - ravaged by cystic fibrosis and immunosuppressants - isn't the best incubator. so, if she can't get pregnant and sustain the fetus, she wants ME (that's right, me) to carry their child for them.
pros: it's my baby sister and she deserves to be a mother if that's what she wants. she and garreth are ready to get married and live happily ever after on that other continent (where she wouldn't have to worry about health care). she's almost as old as i was when i began this new life called motherhood, so i have to believe in her ability to make this decision.
cons: she's in chronic rejection, people. further stress on her body could cause it to shut down. she also injests about 20 different medications a day, surely one of those is dangerous in utero. she and garreth are fun-lovers - i can't imagine them tied to a crib and forced to pay babysitters or, heaven forbid, leave the pub early. she'd move to that continent - he pretty much refuses to live here and at least she could go to the doctor.
so. i don't know what level of participation i should have in this decision. if it comes down to whether i will carry their child sometime in the next 10 months, i'm leaning toward no. in the next 36 months? more likely. i think this is their way of moving forward, but it's desparate and possibly dangerous.
man alive. it's feast or famine around here.
20.2.04
Crisis averted
THEY WERE WRONG!
remember that 2% chance that they misdiagnosed? well, it's a very lucky 2% because they overreacted and declared chronic rejection when it was only bronchial inflammation.
she's upping her prednisone dosage and going home. cured!
as for the baby drama - they wouldn't discuss it with her today. she's supposed to have a roundtable with her gyno and transplant team. we'll see.
anyway - my mother is already calling it a miracle. ash said mama fell to the ground and praised the baby jesus in front of god and medicine.
we're back to normal.
remember that 2% chance that they misdiagnosed? well, it's a very lucky 2% because they overreacted and declared chronic rejection when it was only bronchial inflammation.
she's upping her prednisone dosage and going home. cured!
as for the baby drama - they wouldn't discuss it with her today. she's supposed to have a roundtable with her gyno and transplant team. we'll see.
anyway - my mother is already calling it a miracle. ash said mama fell to the ground and praised the baby jesus in front of god and medicine.
we're back to normal.
18.2.04
Ashbug, flowerpot, anchorhead
bad news bears. my little sister - gifted thespian and prime comedian - was told on friday that she's in chronic rejection.
chronic. not accute like we've been dealing with. accute you can throw medicine at and keep on moving. accute you hook up a home IV and drink some ensure.
no, chronic is not accute. chronic says this body no longer wants these lungs in its presence and so we will begin to kill them off. slowly. and you - little girl who inhabits this body - you will die slowly too. one pound dropped at a time.
and my sister, three years post-transplant on the 15th, is so fucking brave. i can't say whether it's fair or not because she was supposed to die years ago. cheated death even by not dying on the operating table, by breathing through someone else's lungs no less than 12 hours later.
is it fair to me? i don't know. i've had my sister in my life for almost 24 years. that's damned long time when you consider she was supposed to die at 10, then at 12, then at 16, etc. her life keeps getting an extension.
i hear the word chronic and it's like all the doors and windows slam shut at the same time and i'm suffocating. my lungs are dying right along with hers. my body is disappearing just as hers is. i hear the word chronic and i'm reminded that three years ago she finally got to see life from outside the 'chronic illness' umbrella. from a window not streaked with 'terminal'.
so i'm going to be selfish and irrational. i'm going to wail and scream and hurtle objects into the atmosphere. i'm going to plead and demand that my sister's lungs stay right where they are. that modern medicine finds a way to fix this. that someone, god even, takes pity on this woman - places a hand on her chest and whispers 'life'.
and she lives.
chronic. not accute like we've been dealing with. accute you can throw medicine at and keep on moving. accute you hook up a home IV and drink some ensure.
no, chronic is not accute. chronic says this body no longer wants these lungs in its presence and so we will begin to kill them off. slowly. and you - little girl who inhabits this body - you will die slowly too. one pound dropped at a time.
and my sister, three years post-transplant on the 15th, is so fucking brave. i can't say whether it's fair or not because she was supposed to die years ago. cheated death even by not dying on the operating table, by breathing through someone else's lungs no less than 12 hours later.
is it fair to me? i don't know. i've had my sister in my life for almost 24 years. that's damned long time when you consider she was supposed to die at 10, then at 12, then at 16, etc. her life keeps getting an extension.
i hear the word chronic and it's like all the doors and windows slam shut at the same time and i'm suffocating. my lungs are dying right along with hers. my body is disappearing just as hers is. i hear the word chronic and i'm reminded that three years ago she finally got to see life from outside the 'chronic illness' umbrella. from a window not streaked with 'terminal'.
so i'm going to be selfish and irrational. i'm going to wail and scream and hurtle objects into the atmosphere. i'm going to plead and demand that my sister's lungs stay right where they are. that modern medicine finds a way to fix this. that someone, god even, takes pity on this woman - places a hand on her chest and whispers 'life'.
and she lives.
10.2.04
6.2.04
Making friends
believe it or not i'm not very good at making friends.
no, really. people either like me or hate me. i'm not perky, i don't ask about your day, i don't give two flips about what your evening plans are.
i just sit back and observe. listening takes skill - talking in excess seems sloppy to me. i mean, why talk when you've got no content?
this is burdening me today because my office is restructuring. i'll be moving to another office with another officemate. not my homie kg. and this is the ONE person in this entire company i've officially labelled obnoxious.
he's awkward around me too. like everything i say is serious. like everything i say he has to consider and weigh and make a value call on. i don't care if you wanted to major in philosophy and got stuck with communications instead. i want you to see through your egg shells and be fucking normal.
and now i've got to spend 8 hours a day with him. actually, he's a chain smoker, so he spends a good 3 hours each day outside. plus he comes in at 10 and leaves at 7. i come in at 7:30 and leave at 4. not much of an overlap there.
yucky boys. so anyway. this office is on the other side of the building. you remember i'm new, right? well. i don't know smack about anyone over there so now the impetus is on me to be one of them. part of the 201 group. and i'm not good at group. or talking for the fun of it. at least not anymore.
don't get me wrong. in a nonwork environment i can talk your ear off. but, i spent two years in the hell that is the U.S. EPA where i wasn't allowed to talk to anyone for fear of losing my job. it's ingrained.
so, kiddos. what to do? smile and be perky and insincere and fake? be my normal self and risk being deemed "the loner"? we all know loners don't get promoted to upper management.
no, really. people either like me or hate me. i'm not perky, i don't ask about your day, i don't give two flips about what your evening plans are.
i just sit back and observe. listening takes skill - talking in excess seems sloppy to me. i mean, why talk when you've got no content?
this is burdening me today because my office is restructuring. i'll be moving to another office with another officemate. not my homie kg. and this is the ONE person in this entire company i've officially labelled obnoxious.
he's awkward around me too. like everything i say is serious. like everything i say he has to consider and weigh and make a value call on. i don't care if you wanted to major in philosophy and got stuck with communications instead. i want you to see through your egg shells and be fucking normal.
and now i've got to spend 8 hours a day with him. actually, he's a chain smoker, so he spends a good 3 hours each day outside. plus he comes in at 10 and leaves at 7. i come in at 7:30 and leave at 4. not much of an overlap there.
yucky boys. so anyway. this office is on the other side of the building. you remember i'm new, right? well. i don't know smack about anyone over there so now the impetus is on me to be one of them. part of the 201 group. and i'm not good at group. or talking for the fun of it. at least not anymore.
don't get me wrong. in a nonwork environment i can talk your ear off. but, i spent two years in the hell that is the U.S. EPA where i wasn't allowed to talk to anyone for fear of losing my job. it's ingrained.
so, kiddos. what to do? smile and be perky and insincere and fake? be my normal self and risk being deemed "the loner"? we all know loners don't get promoted to upper management.
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