shoulder joints hurt. it was very rough to-day. pain. hopefully i'll sleep deeper to-night.
have pet scan set for monday, 14 july.
this weekend, i'm alone. i think i can handle it. it's just hard to get up sometimes. hopefully there won't be any problems.
i'm trying not to feel anything. pain. pleasure. hope. sadness. comfortably numb? i don't know.... i just want to be able to zone out from the world.
i just wish i could live life by making money, but not seeing anyone. guess i can't do that without a lottery.....
Thursday, June 19, 2014
Friday, June 13, 2014
chemo 5:five alive!
my regular oncologist was back, so i went back to her, rather than the substitute.
she was very sorrowful for missing out on my port adventure. she let me tell the story of how the port felt itchy after i was out all night in the elements. she said that allergies aren't localized to just the port area. she said that when they checked my white blood cells just before this incident, she noticed that they were lower than usual. she thinks that was the culprit. (it helps to have someone who looks at the full picture, and all the charts.... looking for a pattern.) she also said she would have had the port taken out a month or two later.... but i'm glad it's out now. (especially if i have to have radiation on that side)
the nurse practitioner said that my glucose levels were up, but not dangerously so. my oncologist said that would happen when you get steroids. i was relieved when she said that. my mother had diabetes near the end... i have to keep away from that.
she was concerned a bit over my higher heart rate. (so was her nurse.... she insisted on a hug, and told me all will be better soon.) she said that could be because of the stress of getting here (i told her i was in no way used to morning traffic), or it could be because i was dehydrated. she said that the chemo will give me fluids to help me along (and how!), but i think it was more because i got a little lost when i missed my exit. i am *so* going to leave early the next time i go in......
i'm going to have a last chemo on the 7th. (not on the 4th, when it naturally would fall. that's a holiday, and i'll more than likely be spending that at home watching strange movies.) i have a pet scan that will be scheduled the week of the 14th, to see if there is any more cancer in me. she'll call me with the results. if i still have cancer in me, then i will have approximately 30 sessions of radiation. (4-5 weeks) my oncologist assures me that i can work during radiation, but i'm still on the fence about it. i mean, i'm tough and all....but am i mentally ready to return to work?
she didn't have much to say about my eyes.... i think i'm just going to have to make do with re-wetting drops, and hope that they return to normal soon......
the chemo was longer, and a bit rougher. they jabbed both arms (not hands, but inner arms) to get an i.v. in. i was very timid at first to type.....and even now my right arm feels swollen. one nurse was asking questions i had never been asked, and i got a "i shoulda been a doctor" vibe from her. it was ok, though. some people are like that.... i sometimes get that way when someone thinks i can't do what a librarian does. i wish her well. i've got that "full of liquid drug" feeling i always get....but this time i'm drinking more water. i'm a thirsty thang!
i was in better spirits this morning. it was good to see my oncologist, and i joked with her a bit. made me happy to be happy with her. the chemo was a bit sketchy, but it's passed.... and there's only one more to go.
i might be able to pull this off, you know?
she was very sorrowful for missing out on my port adventure. she let me tell the story of how the port felt itchy after i was out all night in the elements. she said that allergies aren't localized to just the port area. she said that when they checked my white blood cells just before this incident, she noticed that they were lower than usual. she thinks that was the culprit. (it helps to have someone who looks at the full picture, and all the charts.... looking for a pattern.) she also said she would have had the port taken out a month or two later.... but i'm glad it's out now. (especially if i have to have radiation on that side)
the nurse practitioner said that my glucose levels were up, but not dangerously so. my oncologist said that would happen when you get steroids. i was relieved when she said that. my mother had diabetes near the end... i have to keep away from that.
she was concerned a bit over my higher heart rate. (so was her nurse.... she insisted on a hug, and told me all will be better soon.) she said that could be because of the stress of getting here (i told her i was in no way used to morning traffic), or it could be because i was dehydrated. she said that the chemo will give me fluids to help me along (and how!), but i think it was more because i got a little lost when i missed my exit. i am *so* going to leave early the next time i go in......
i'm going to have a last chemo on the 7th. (not on the 4th, when it naturally would fall. that's a holiday, and i'll more than likely be spending that at home watching strange movies.) i have a pet scan that will be scheduled the week of the 14th, to see if there is any more cancer in me. she'll call me with the results. if i still have cancer in me, then i will have approximately 30 sessions of radiation. (4-5 weeks) my oncologist assures me that i can work during radiation, but i'm still on the fence about it. i mean, i'm tough and all....but am i mentally ready to return to work?
she didn't have much to say about my eyes.... i think i'm just going to have to make do with re-wetting drops, and hope that they return to normal soon......
the chemo was longer, and a bit rougher. they jabbed both arms (not hands, but inner arms) to get an i.v. in. i was very timid at first to type.....and even now my right arm feels swollen. one nurse was asking questions i had never been asked, and i got a "i shoulda been a doctor" vibe from her. it was ok, though. some people are like that.... i sometimes get that way when someone thinks i can't do what a librarian does. i wish her well. i've got that "full of liquid drug" feeling i always get....but this time i'm drinking more water. i'm a thirsty thang!
i was in better spirits this morning. it was good to see my oncologist, and i joked with her a bit. made me happy to be happy with her. the chemo was a bit sketchy, but it's passed.... and there's only one more to go.
i might be able to pull this off, you know?
imagined conversation
i'm in the chemo room, about to get ready for treatment.
suddenly, a man falls in front of me. i catch him, and slowly lie him down in a chemo chair.
"i don't want to be here! i don't want to be here!" he says.
"no one does," i say. i gesture towards his i.v. "but with each drop of pain this bag gives you, it also gives you a wellspring of hope."
he silently shakes his head. he begins to look like my daddy, and i hold back my tears.
"what number chemo are you on?"
"seven."
"out of what?"
"fourteen."
i giggle in an ironic way. "it's hard to be smack dab in the middle, huh?"
he nods, softening a bit.
"it's like you're on the top of the mountain.... and each time you come in here, it's another step down. " i raise my hand high. "seven." i lower my hand further. "eight.....nine....ten.... eleven....." with each number, my voice gets softer, and more dreamlike.....
"and then ....after all the pain, you're at the bottom of the mountain..... and you see a river. and in that river is a beautiful boat...... you get in, and you can fish for days. or just lie there, and let it float you along....."
he looks at me in amazement, caught up in my story. (well, he hasn't called security, anyway.)
"and when you get to middle of the river, you turn around, and notice the mountain's gotten smaller ....and smaller still. it becomes a hill... a plateau.... a speed bump...... a speck in your eyes......
..you blink your eyes, and the speck is gone."
and i'm caught up in my words, and tearing up. and he's caught up in the dream, and he's nodding, and squeezing my hand......
and i walk all the way to my last chemo thinking.... "just one more step.... just one. more. step."
and these are the things i think of to get me away from this hell.
sometimes, it's all i've got.
suddenly, a man falls in front of me. i catch him, and slowly lie him down in a chemo chair.
"i don't want to be here! i don't want to be here!" he says.
"no one does," i say. i gesture towards his i.v. "but with each drop of pain this bag gives you, it also gives you a wellspring of hope."
he silently shakes his head. he begins to look like my daddy, and i hold back my tears.
"what number chemo are you on?"
"seven."
"out of what?"
"fourteen."
i giggle in an ironic way. "it's hard to be smack dab in the middle, huh?"
he nods, softening a bit.
"it's like you're on the top of the mountain.... and each time you come in here, it's another step down. " i raise my hand high. "seven." i lower my hand further. "eight.....nine....ten.... eleven....." with each number, my voice gets softer, and more dreamlike.....
"and then ....after all the pain, you're at the bottom of the mountain..... and you see a river. and in that river is a beautiful boat...... you get in, and you can fish for days. or just lie there, and let it float you along....."
he looks at me in amazement, caught up in my story. (well, he hasn't called security, anyway.)
"and when you get to middle of the river, you turn around, and notice the mountain's gotten smaller ....and smaller still. it becomes a hill... a plateau.... a speed bump...... a speck in your eyes......
..you blink your eyes, and the speck is gone."
and i'm caught up in my words, and tearing up. and he's caught up in the dream, and he's nodding, and squeezing my hand......
and i walk all the way to my last chemo thinking.... "just one more step.... just one. more. step."
and these are the things i think of to get me away from this hell.
sometimes, it's all i've got.
Thursday, June 12, 2014
sit rep
ok, i'm not suicidal. i have to live. there's too much going on in my life to leave this earth. there's too much riding on these tires....
it's just very hard not to be scared, and discouraged, and weepy right now.
to-morrow i'm going in for the chemo. i'm not 100%. in fact, i feel really weak. my regular oncologist will be there, and i have to ask her when she thinks i'll be done with my treatment since my vacation time ends this month.
i'm going to be entirely alone with a sub-standard vehicle all next weekend.
i'm feeling that everyone, and everything is slowly puling away from me.
this fight takes too long, i guess. (most wars do. i just wish..... too many things.)
i'm packing my chemo bag to-night. ginger candy. lemon drops. tissues. laptop. journal.
hope? if i can find any.
and the world travels on....
it's just very hard not to be scared, and discouraged, and weepy right now.
to-morrow i'm going in for the chemo. i'm not 100%. in fact, i feel really weak. my regular oncologist will be there, and i have to ask her when she thinks i'll be done with my treatment since my vacation time ends this month.
i'm going to be entirely alone with a sub-standard vehicle all next weekend.
i'm feeling that everyone, and everything is slowly puling away from me.
this fight takes too long, i guess. (most wars do. i just wish..... too many things.)
i'm packing my chemo bag to-night. ginger candy. lemon drops. tissues. laptop. journal.
hope? if i can find any.
and the world travels on....
Monday, June 9, 2014
best laid plans
i went in to-day for a chemo. my port had other ideas.
again, i have a fever that i didn't know i had. (i can't help it. i'm usually the warmest in the room) again, i have an infection in my port that i didn't know i had. (it was a little sore...but they said it was warm to the touch, and looked "angry.")
i wish i were more in touch with my body.
so... usually they take blood out of me first thing, to make sure my levels are ok for chemo. also, it's a good time for them to connect something to my port, so they can start chemo as soon as i get up there.
that's when they noticed how bad it looked. i'm just so used to it looking like a bruise that i didn't think anything about it.
so they took the blood from my arm, and sent me upstairs.
the oncologist who was subbing for my regular oncologist came in. he noticed right off that i was a bit tired, and sad. he said that i had a slight fever of 100.8. i told him that i was instructed to show him my port right off. immediately, he was alert, and there was an urgency in his voice. that port had to be taken out to-day, and my chemo will have to be delayed until.....
then he stopped talking, and excused himself. he bolted out the door.
he came back with another oncologist. they talked back and forth amongst themselves.
"you're right. it should come out. wait, what chemo does she do?"
"rchop."
"well that one drug (he named it, i forgot what it was) is a bit harsh."
"yeah, but she has only two left."
"oh, good then. no problem. do it."
then they both assured me it was the right thing to do, especially since it's been causing me trouble from day one.
i had numerous questions for the oncologist, but i knew that they had to wait, because this emergency superseded anything that i was thinking. i did get to ask if my nails were supposed to look like they had white stripes on them. (they were.) and i did ask if the chemo was still working even though my body acted like it was handling the drugs better (it is.) he also felt under my arm, and said whatever was under my arm was quite small... which was a good hope.
i was teary eyed as he explained what was going to happen. (it didn't help that i had taken the prednisone early in the morning.) i was to go home, take the antibiotic that i had just in case of infection, and wait for a call from the hospital to tell me when i could come in.
i kept telling myself that they would have taken the port out anyway...it was just early. also, they weren't delaying chemo too long.... just a few days. but i felt like everything was my fault, and i had failed the test of cancer. i was numb, and very sad.
luckily, my oldest was able to get out of work to help me. (he was also the one who took me to get the port in, so he remembered things better, which proved to be quite important later.)
my son came over and stayed with me while i waited for the call. we both watched "game of thrones" (which has become our tradition now), and both kept checking our phones. me, for the hospital. him. for texts from his girlfriend.
once we got to the hospital, it was near lunchtime, so we had to wait a little. the financial lady called me into her office.... and only needed $90, which was nice to hear. she asked "what kind of cancer are you surviving from?" and i told her. she said her grandfather died of cancer, so she was glad to see any survivors, and was happy to be able to encourage them.
i don't feel like i'm surviving yet. i don't have the privilege to say that yet. still, i nodded, and thanked her. so many people know someone who has died of cancer. it's so horrible to be so helpless....both as the victim, and the surviving members. it's not fair to have this killer in me.
the paula deen receptionist was there.... as well as the cool male nurse. he took my son and i into a waiting area, and filled out several pieces of paper that would have been done beforehand, had they known i was coming. he said a lot of encouraging things....and tried to joke the shock out of me, but after a-while all i could do is nod, smile, and fake laugh.
sometimes i feel like i'm acting in front of the doctors, and the nurses. in fact, my son said i was very apologetic towards the operating doctor, because i knew he was the one who put the port in. i was like "i'm sorry. i know ports work for other people. i'm just weird. it's just one of those things."
appeasing. as i do.
at one point, the male nurse was trying to find out if they checked my platelets this morning. (man, did they! they took out four tubes for the pre-chemo check, and four mini tabasco-shaped bottles before i left, to check for infection.) i was very sure they had checked my platelets, but it took him several minutes of checking and rechecking the numerous forms that were faxed over before he found out that i was safe to be operated on.
i was told to change into the dressing gown in the bathroom, disrobing from the waist up. after i did that, i followed the male nurse.....
.....right into the operating room.
i. was. not. ready. i damn near lost it then. i thought i was going to be put back in the waiting area, like i was before. i totally wasn't prepared.
it was a huge room, with five different people scurrying around. there was a big monitor next to the patient bed, as big as a flat screen tv. i was lead over to the bed, and carefully guided to a prone position. the coldness of the room finally hit me, and i trembled inside. as they hooked up the sensors, and iv, i did my best to hide my tears.
i'm such a fucking idiot.
they put a sterile plastic sheet over me. it was so big it covered part of my face.
i felt the sting of the many drugs they injected in me. i felt some sort of sharpness as they worked over my incision. i didn't feel the tugging, or the closing of the scar.
after, my son took me for lunch. they also gave me dr pepper, and a box lunch at the hospital. "cancer perks"
and now i sit. still numb. the wound is throbbing a little. i'm trying to stay away from people that make me upset. i'm trying to recover as best i can. (hard to do when i'm supposed to always sit up, or lie in a 45 degree angle.....something my son reminded me that they told me before. )
i should be happy. i got the port out early, and the chemo delay is only a few days. also, if i have to do radiation, the port won't be in the way.
i guess i'm upset because it's just one more thing that reminds me that i'm not in control of anything. not in life. not in death. not in anything.
i'm still crying. i'm still a basket case. i'm still stupid with drugs, and emotions, and the hell inside. i have to convince myself that this mess is all worth it.
....am i even worth it?
again, i have a fever that i didn't know i had. (i can't help it. i'm usually the warmest in the room) again, i have an infection in my port that i didn't know i had. (it was a little sore...but they said it was warm to the touch, and looked "angry.")
i wish i were more in touch with my body.
so... usually they take blood out of me first thing, to make sure my levels are ok for chemo. also, it's a good time for them to connect something to my port, so they can start chemo as soon as i get up there.
that's when they noticed how bad it looked. i'm just so used to it looking like a bruise that i didn't think anything about it.
so they took the blood from my arm, and sent me upstairs.
the oncologist who was subbing for my regular oncologist came in. he noticed right off that i was a bit tired, and sad. he said that i had a slight fever of 100.8. i told him that i was instructed to show him my port right off. immediately, he was alert, and there was an urgency in his voice. that port had to be taken out to-day, and my chemo will have to be delayed until.....
then he stopped talking, and excused himself. he bolted out the door.
he came back with another oncologist. they talked back and forth amongst themselves.
"you're right. it should come out. wait, what chemo does she do?"
"rchop."
"well that one drug (he named it, i forgot what it was) is a bit harsh."
"yeah, but she has only two left."
"oh, good then. no problem. do it."
then they both assured me it was the right thing to do, especially since it's been causing me trouble from day one.
i had numerous questions for the oncologist, but i knew that they had to wait, because this emergency superseded anything that i was thinking. i did get to ask if my nails were supposed to look like they had white stripes on them. (they were.) and i did ask if the chemo was still working even though my body acted like it was handling the drugs better (it is.) he also felt under my arm, and said whatever was under my arm was quite small... which was a good hope.
i was teary eyed as he explained what was going to happen. (it didn't help that i had taken the prednisone early in the morning.) i was to go home, take the antibiotic that i had just in case of infection, and wait for a call from the hospital to tell me when i could come in.
i kept telling myself that they would have taken the port out anyway...it was just early. also, they weren't delaying chemo too long.... just a few days. but i felt like everything was my fault, and i had failed the test of cancer. i was numb, and very sad.
luckily, my oldest was able to get out of work to help me. (he was also the one who took me to get the port in, so he remembered things better, which proved to be quite important later.)
my son came over and stayed with me while i waited for the call. we both watched "game of thrones" (which has become our tradition now), and both kept checking our phones. me, for the hospital. him. for texts from his girlfriend.
once we got to the hospital, it was near lunchtime, so we had to wait a little. the financial lady called me into her office.... and only needed $90, which was nice to hear. she asked "what kind of cancer are you surviving from?" and i told her. she said her grandfather died of cancer, so she was glad to see any survivors, and was happy to be able to encourage them.
i don't feel like i'm surviving yet. i don't have the privilege to say that yet. still, i nodded, and thanked her. so many people know someone who has died of cancer. it's so horrible to be so helpless....both as the victim, and the surviving members. it's not fair to have this killer in me.
the paula deen receptionist was there.... as well as the cool male nurse. he took my son and i into a waiting area, and filled out several pieces of paper that would have been done beforehand, had they known i was coming. he said a lot of encouraging things....and tried to joke the shock out of me, but after a-while all i could do is nod, smile, and fake laugh.
sometimes i feel like i'm acting in front of the doctors, and the nurses. in fact, my son said i was very apologetic towards the operating doctor, because i knew he was the one who put the port in. i was like "i'm sorry. i know ports work for other people. i'm just weird. it's just one of those things."
appeasing. as i do.
at one point, the male nurse was trying to find out if they checked my platelets this morning. (man, did they! they took out four tubes for the pre-chemo check, and four mini tabasco-shaped bottles before i left, to check for infection.) i was very sure they had checked my platelets, but it took him several minutes of checking and rechecking the numerous forms that were faxed over before he found out that i was safe to be operated on.
i was told to change into the dressing gown in the bathroom, disrobing from the waist up. after i did that, i followed the male nurse.....
.....right into the operating room.
i. was. not. ready. i damn near lost it then. i thought i was going to be put back in the waiting area, like i was before. i totally wasn't prepared.
it was a huge room, with five different people scurrying around. there was a big monitor next to the patient bed, as big as a flat screen tv. i was lead over to the bed, and carefully guided to a prone position. the coldness of the room finally hit me, and i trembled inside. as they hooked up the sensors, and iv, i did my best to hide my tears.
i'm such a fucking idiot.
they put a sterile plastic sheet over me. it was so big it covered part of my face.
i felt the sting of the many drugs they injected in me. i felt some sort of sharpness as they worked over my incision. i didn't feel the tugging, or the closing of the scar.
after, my son took me for lunch. they also gave me dr pepper, and a box lunch at the hospital. "cancer perks"
and now i sit. still numb. the wound is throbbing a little. i'm trying to stay away from people that make me upset. i'm trying to recover as best i can. (hard to do when i'm supposed to always sit up, or lie in a 45 degree angle.....something my son reminded me that they told me before. )
i should be happy. i got the port out early, and the chemo delay is only a few days. also, if i have to do radiation, the port won't be in the way.
i guess i'm upset because it's just one more thing that reminds me that i'm not in control of anything. not in life. not in death. not in anything.
i'm still crying. i'm still a basket case. i'm still stupid with drugs, and emotions, and the hell inside. i have to convince myself that this mess is all worth it.
....am i even worth it?
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