i take that back.
i got a call at 10:30 this morning from my oncologist's nurse. apparently my doctor went on a trip to arizona for some meeting of investigator's, presumably related to a clinical trial, and no one realized until this morning that he wouldn't be here to supervise my first treatment, which is apparently required in case i have some sort of bad reaction or whatever.
so here i am in this heightened state of anxiety, scared to death and ready for it to just be over and to know what's going to happen, and i have to WAIT. i know, it's only a day, but right now that's a day of constant agonizing and fear and anxiousness that i have to get through, and it's totally thrown me for a loop. i can't calm down or stop being upset, i can't even just sit and breathe or focus, i'm all over the place and crying all the time and i am supposed to be working and getting things together that i need from my office but i can't, i can't think straight at all.
but i'm going to go home and keep the schedule i've already set as if i had my appointment anyway. get some rest this afternoon and tomorrow, and try and get centered again so i'm not a complete wreck tomorrow.
i hate doctors, hospitals, health case, systems like this where people don't communicate and the people who get left out and left behind are the patients.
"oops, i'm sorry, we have to reschedule your open heart surgery, because your doc went to play golf in palm springs today with a drug company exec. you know, very last minute, we had no idea..."
1.31.2005
day one -- before
it's 9:30 a.m. on my first day of treatment. i am set to enter the infusion room at 3:30 this afternoon, and since if i stayed home today i'd spend all day worrying about what's going to happen, i'm at work, pretending to write code and worrying about what's going to happen anyway. but at least i'm somewhat distracted.
my parents are coming with me, both, today, which will be good. i think the company, having people there to support me and help however i need, will be really helpful. they're going to be there, one or the other, every day i have IV treatments, which is five days a week -- monday through friday -- for the next four weeks. after that, i get to give myself the injections at home, three days a week.
i'm good at hiding my emotions, but to be quite honest, i'm terrified. not that anything bad is going to happen during the infusion itself, but of what happens after, when i get sick, and how much it's going to affect my other health issues -- seizures and pain, mostly. i'm afraid of the unknown.
i know that many of my family and friends are probably reading this now, and want to thank you all for your support during this difficult time. i will most likely not be able to take many calls during the coming weeks, though gramma can give you status updates if you would like to call and check on me, but i will be updating here when i am up to it, hopefully daily. i won't be taking visitors until i'm through this first phase, and after that it will depend on how my immune system is affected by treatment and whether i need to stay away from possible illness as much as possible.
thank everyone, again, for your thoughts and prayers as i continue on my journey and fight this disease. i could not do this without your support.
my parents are coming with me, both, today, which will be good. i think the company, having people there to support me and help however i need, will be really helpful. they're going to be there, one or the other, every day i have IV treatments, which is five days a week -- monday through friday -- for the next four weeks. after that, i get to give myself the injections at home, three days a week.
i'm good at hiding my emotions, but to be quite honest, i'm terrified. not that anything bad is going to happen during the infusion itself, but of what happens after, when i get sick, and how much it's going to affect my other health issues -- seizures and pain, mostly. i'm afraid of the unknown.
i know that many of my family and friends are probably reading this now, and want to thank you all for your support during this difficult time. i will most likely not be able to take many calls during the coming weeks, though gramma can give you status updates if you would like to call and check on me, but i will be updating here when i am up to it, hopefully daily. i won't be taking visitors until i'm through this first phase, and after that it will depend on how my immune system is affected by treatment and whether i need to stay away from possible illness as much as possible.
thank everyone, again, for your thoughts and prayers as i continue on my journey and fight this disease. i could not do this without your support.
1.28.2005
and so it begins
the calendar on the side of the fridge is blank for january, but if you turn the page it's a completely different story. i sat down the other night and wrote in all of my treatment appointments, and every weekday from january 31st to february 25th has an entry, some days two or even three. looking at it is frightening, a clear and undeniable reminder of the scale of what is ahead. especially knowing that after this follows eleven months more -- with fewer appointments, but still much the same.
this will be a long and arduous journey, marked by illness, appointments, blood tests, injections, likely hospital visits and a few emergencies. it will be a war waged from beds, couches, and infusion rooms, in front of the toilet and at the dinner table, in the care of doctors and nurses and family members, fighting not just against cancer but against its treatment.
i'm afraid. i'm already tired. i'm tired of worrying and ready to start, and yet the fact that three days stand between me and that first infusion is incredibly terrifying. i don't know what this will be like, and neither does anyone else. that's what's the scariest of all. i'm a unique patient, a special population, a poor treatment candidate and likely to be severely affected by some of the worst side effects, like seizures and severe depression and nausea, vomiting, and loss of appetite (the latter has been noted over and over by cancer patients in my reading as an obvious redundancy if you're already puking).
but regardless of what happens, i'll be writing about it here, so that everyone who is part of my extended support network, all my family and friends, can keep up with how i am doing even when i can't answer calls or see visitors. thank you to everyone for your continued support, thoughts, prayers, and gifts of all kinds both tangible and intangible to help me through this difficult time. i can only get through with all of you standing beside me, and the knowledge that my room, my home is filled with the spirits of everyone who has offered support is one of the few things that at this time gives me any hope.
please feel free to leave me messages in the form of comments here, or in emails at flowernightmare --at-- gmail.com (replace with @, so i don't get spammed). i will be checking email when i can, and hopefully i will have the opportunity to talk to all of you very important people throughout the next year.
j.
this will be a long and arduous journey, marked by illness, appointments, blood tests, injections, likely hospital visits and a few emergencies. it will be a war waged from beds, couches, and infusion rooms, in front of the toilet and at the dinner table, in the care of doctors and nurses and family members, fighting not just against cancer but against its treatment.
i'm afraid. i'm already tired. i'm tired of worrying and ready to start, and yet the fact that three days stand between me and that first infusion is incredibly terrifying. i don't know what this will be like, and neither does anyone else. that's what's the scariest of all. i'm a unique patient, a special population, a poor treatment candidate and likely to be severely affected by some of the worst side effects, like seizures and severe depression and nausea, vomiting, and loss of appetite (the latter has been noted over and over by cancer patients in my reading as an obvious redundancy if you're already puking).
but regardless of what happens, i'll be writing about it here, so that everyone who is part of my extended support network, all my family and friends, can keep up with how i am doing even when i can't answer calls or see visitors. thank you to everyone for your continued support, thoughts, prayers, and gifts of all kinds both tangible and intangible to help me through this difficult time. i can only get through with all of you standing beside me, and the knowledge that my room, my home is filled with the spirits of everyone who has offered support is one of the few things that at this time gives me any hope.
please feel free to leave me messages in the form of comments here, or in emails at flowernightmare --at-- gmail.com (replace with @, so i don't get spammed). i will be checking email when i can, and hopefully i will have the opportunity to talk to all of you very important people throughout the next year.
j.
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