so i won't get to see the oncologist after all... they left a message congratulating me on a good scan and "see you in april".... which is the same time i'll see the radiologist. (i'll make sure to see the oncologist after, though... i like having her as the closer/explainer. )
so.. i'll see the surgeon to get my drain out on monday and.... that's it.
i'll call and leave a message for the oncologist's nurse, though. mainly about terms. am i cancer free? am i in remission? what's the difference? how many years until i'm considered cured? what what? why why?
how?
i'm a little better day by day. i worked a full eight hours friday which wasn't good for me, but i had a lot of breaks, and took it as easy as i could. i'm not drinking enough water.... i'm going to get a filtered water bottle, for sure, when i get enough energy to go shopping. i need to be careful of what i eat, and drink from here on in. is it good for me? will it help me? will it just waste my energy, and give me stupid sugar highs?
hopefully the weather will be better, and i can get out more soon. i want to be healed... well, i am sort of healed...i just need to get over this surgery. i still am numb under the arm. (that's probably a blessing.)
i should get some more sleep......
Saturday, January 31, 2015
Thursday, January 29, 2015
results
had a bit of a rough night last night. back and forth to the bathroom.... but not any hard pain. just dull throbbing pain. i'll get over it, soon.
my radiologist called just now.
she said that there was no lymphoma in me. they took out a fair chunk under my arm, where i was affected... and that it must have been an infection that lit up the screen.
i didn't get any other plans. no "see us in a few weeks." no "we'll keep testing." nothing. that's implied.
i want tests. i want to make sure the plague is gone.
i want to believe her.
but i don't.
i have to think about this... to own my own cure.... to look up and see hope right there staring at me....
...telling me that i'm ok.
about this time last year, i was just starting the battle... scared, and alone. buckets of tears, and wailing.
and now....
i hope.
my radiologist called just now.
she said that there was no lymphoma in me. they took out a fair chunk under my arm, where i was affected... and that it must have been an infection that lit up the screen.
i didn't get any other plans. no "see us in a few weeks." no "we'll keep testing." nothing. that's implied.
i want tests. i want to make sure the plague is gone.
i want to believe her.
but i don't.
i have to think about this... to own my own cure.... to look up and see hope right there staring at me....
...telling me that i'm ok.
about this time last year, i was just starting the battle... scared, and alone. buckets of tears, and wailing.
and now....
i hope.
Wednesday, January 28, 2015
back at work
a little woozy. no worries. i only work four hours to-day.
my right arm won't go all the way down. bad flashback from the time before chemo, when i had the tumour under my arm. but... it's ok. we'll make do.
i feel lighter.
hopefully i can keep drinking water, and sleeping better. i didn't get to bed as early as i wanted to... sleep wouldn't come. i think i was chasing it too much....
no news yet. i hope i won't get a call until thursday. that's when i come in at night... i don't want to miss her call.
i gained hope by reading this: http://dslrf.org/breastcancer/content.asp?L2=3&L3=7&SID=132&CID=2019&PID=22&CATID=36
Studies have shown that the chance of missing a positive lymph node if we remove the tissue in the lower two levels of the armpit is less than 2 percent.
surely what they took out was the last of it. surely i'll be on "watch and wait" rather than "leap, and chemo"....
but... i won't expect anything. expectation leads to sadness at this point. all i can do is remain calm, and think of work... home... school... the ocean....
anything but what could happen.
one day, i'll get over this "i'll think about that to-morrow" phase....
hopefully soon....
my right arm won't go all the way down. bad flashback from the time before chemo, when i had the tumour under my arm. but... it's ok. we'll make do.
i feel lighter.
hopefully i can keep drinking water, and sleeping better. i didn't get to bed as early as i wanted to... sleep wouldn't come. i think i was chasing it too much....
no news yet. i hope i won't get a call until thursday. that's when i come in at night... i don't want to miss her call.
i gained hope by reading this: http://dslrf.org/breastcancer/content.asp?L2=3&L3=7&SID=132&CID=2019&PID=22&CATID=36
Studies have shown that the chance of missing a positive lymph node if we remove the tissue in the lower two levels of the armpit is less than 2 percent.
surely what they took out was the last of it. surely i'll be on "watch and wait" rather than "leap, and chemo"....
but... i won't expect anything. expectation leads to sadness at this point. all i can do is remain calm, and think of work... home... school... the ocean....
anything but what could happen.
one day, i'll get over this "i'll think about that to-morrow" phase....
hopefully soon....
Monday, January 26, 2015
lymph node removal
i will not remember all of this
so...went in at 6:30. the promised valet parking wasn't there. no worries. son dropped me off, found a parking space, then came back.
it was in the same building as radiation, so it wasn't hard to find. it was on the floor above it
so, i went in, and waited in the waiting room with the son. he talked of the snow coming to the north, the great weather coming to us, and stuff.
i talked to the admitting person. since i already paid the co-pay over the phone, it was an easy process. bracelet on the left hand, and then a bit more of a wait.
then i went in. alone.
i was asked to change into a gown. (a plastic lined disposable one.) also socks. (the same purple grippy socks i had had for the bone marrow biopsy.) then, because i looked apprehensive, they offered to have my son come in and stay with me.
he did
he talked of "godspell" (the auditions.... he ended up singing as judas. he thinks he did good, and would be surprised if he didn't get a good role.)
we waited. uneasy talk. it's hard to come up with a conversation to talk to with your mother when she's a basket case, but he did good.
the nurse came in to check vitals. she found out why i was there. she said she hoped they didn't find anything. i said i hoped so, too.
she started to put an iv in my hand. that's the time my son thought it was a good idea to distract me by saying that another girl was after him. he said he didn't want to pursue someone so soon after the breakup, but that he was flattered. he was amazed that girls were after him, he didn't see what they saw in him. the nurse said that sounded like her brother. i started singing "that's what makes you beautiful.... you don't know you're beautiful..."
my son said that i shouldn't know that song, because it's not of my generation. heck, it wasn't even of his generation. we both giggled.
there was no need to distract, though. the nurse had numbed the area around the iv before putting the iv in my hand. good woman. she started me on saline, and was gone.
i let my son talk a little bit longer, then bade him go. he was yawning, and the conversation was ebbing away. he asked if i were sure. i was. i wanted him to get coffee.... to read.... to memorize his lines for the play he was in....
i wanted him to live....
it was a good move to have him go. soon, an electrocardiogram man came in. he asked my name. (which is what all the nurses asked, to insure that things got done to the right person.) i told him. he did not ask my birth date. soon, he was engaging me in small talk, while hooking me up to an ekg. i had had one in the past, so i thought it wasn't out of line to get one now. he was at the point of connecting the stickers on my body to the wires on the machine when he said..."you know what... is this area 4?"
it wasn't. i didn't know that, but he found out.
soon, i was unhooked, and un-stickered.
yeah.
he left, and i tried to re-cover my self as best as i could.
(edit: somewhere around here, the anesthesiologist came in. he was calm, polite, and reassuring. he didn't have any details on what the doctor was going to do. he just knew he had enough drugs to knock me out all day, if i needed it. good man. i should invite him to one of my birthday parties.)
soon after, the surgeon came over.
"are you ready for this? well, as ready as you are going to be?"
i nodded.
"left arm, right?'
"um.... no. under my right armpit."
"oh...yeah. sure."
he took a pen out and drew a squiggle on my right shoulder. then, he checked my record. nodding and smiling, he said "see you in a little while."
and then he was gone
i shook inside. earlier, i had felt like my bones were cold. not my skin. not my muscles....but my very bones.
it was a hard feeling to let go of.
soon, a nurse came to wheel me out. she asked my name, and birthdate. she helped me to the wheelchair, and hooked my iv to the stand connected to it.
by then i was the last person in the area. there had been a young girl there, who cried on the way to the surgery. her parents couldn't go with her to the operating area, which was sad. it might have helped her....
i got wheeled into the operating area. it was warm (per the surgeon's instructions.) the nurse helped me lie down on the table. there was a foam-ish pillow under my head. they wrapped plastic things around my legs. another woman asked what my blood pressure usually was. she nodded when i told her.... my low blood pressure always seems to catch medical people off guard.
someone put a mask loosely over my mouth and nose, without strapping it on. she said that i would be getting oxygen at first. they attached planks to the table so i could rest my arms on them. i heard the sound of anonymous country music.... they said now they would be giving me the anesthetics .....
and soon i was off to sleep.
i woke up in bed. i was very foggy. the nurse fed me ice chips for a-while. another nurse removed the leg coverings. i was asked if i were ok. it took a moment... then a moment more... as if i were a flower slowly opening up.....
a flower being encouraged to bloom faster in a non-pressure-like way.
i was wheeled back to the area i was before. i teared up, waiting for my belongings, my bearings, and my son. a nurse came by and said "oh no, it'll work out. you're going to be fine, right?" i said yes, it was just nerves.... she nodded, and understood.
soon, my son was there, and was nervously glad to see me. he stepped into the hall while i changed back into my clothes. it wasn't hard, but i wasn't a hundred percent there, so i went slow, even though it seemed like i was being rushed. (i totally get that attitude, though. if i wasn't encouraged on, i would have lingered, and wallowed, and that wouldn't have been good at all.)
they gave me a pepsi (my choice) and then water. they told me not to get my incision wet, and taught me how to work the drain i was wearing. (a jackson-pratt drain... i'd never had one before.) i was encouraged to get an appointment with the surgeon to get the drain out (which i got for as soon as possible -- seven days later.)
then my son got the car, and i was wheeled to the curb, and sent home.
i wasn't hungry, but i knew i had to eat. so, to qdoba we went, with good queso, good burrito, and good talk. as i ate, i got hungrier. it helped to be eating something that felt healthy, and light.
i must still drink water. i must try to up my fiber for at least a little while, because of the meds. i must take it easy if i want to go back to work wednesday.
i must stop writing about this, huh?
i'll try to sleep. i really didn't think i would write about it so soon, but i'm glad i can remember things... and i went with it.
here's to an easy week..... and hope for a good prognosis. i won't think about it until i get the call from my oncologist. if i do, i'll go mad.....
hope
so...went in at 6:30. the promised valet parking wasn't there. no worries. son dropped me off, found a parking space, then came back.
it was in the same building as radiation, so it wasn't hard to find. it was on the floor above it
so, i went in, and waited in the waiting room with the son. he talked of the snow coming to the north, the great weather coming to us, and stuff.
i talked to the admitting person. since i already paid the co-pay over the phone, it was an easy process. bracelet on the left hand, and then a bit more of a wait.
then i went in. alone.
i was asked to change into a gown. (a plastic lined disposable one.) also socks. (the same purple grippy socks i had had for the bone marrow biopsy.) then, because i looked apprehensive, they offered to have my son come in and stay with me.
he did
he talked of "godspell" (the auditions.... he ended up singing as judas. he thinks he did good, and would be surprised if he didn't get a good role.)
we waited. uneasy talk. it's hard to come up with a conversation to talk to with your mother when she's a basket case, but he did good.
the nurse came in to check vitals. she found out why i was there. she said she hoped they didn't find anything. i said i hoped so, too.
she started to put an iv in my hand. that's the time my son thought it was a good idea to distract me by saying that another girl was after him. he said he didn't want to pursue someone so soon after the breakup, but that he was flattered. he was amazed that girls were after him, he didn't see what they saw in him. the nurse said that sounded like her brother. i started singing "that's what makes you beautiful.... you don't know you're beautiful..."
my son said that i shouldn't know that song, because it's not of my generation. heck, it wasn't even of his generation. we both giggled.
there was no need to distract, though. the nurse had numbed the area around the iv before putting the iv in my hand. good woman. she started me on saline, and was gone.
i let my son talk a little bit longer, then bade him go. he was yawning, and the conversation was ebbing away. he asked if i were sure. i was. i wanted him to get coffee.... to read.... to memorize his lines for the play he was in....
i wanted him to live....
it was a good move to have him go. soon, an electrocardiogram man came in. he asked my name. (which is what all the nurses asked, to insure that things got done to the right person.) i told him. he did not ask my birth date. soon, he was engaging me in small talk, while hooking me up to an ekg. i had had one in the past, so i thought it wasn't out of line to get one now. he was at the point of connecting the stickers on my body to the wires on the machine when he said..."you know what... is this area 4?"
it wasn't. i didn't know that, but he found out.
soon, i was unhooked, and un-stickered.
yeah.
he left, and i tried to re-cover my self as best as i could.
(edit: somewhere around here, the anesthesiologist came in. he was calm, polite, and reassuring. he didn't have any details on what the doctor was going to do. he just knew he had enough drugs to knock me out all day, if i needed it. good man. i should invite him to one of my birthday parties.)
soon after, the surgeon came over.
"are you ready for this? well, as ready as you are going to be?"
i nodded.
"left arm, right?'
"um.... no. under my right armpit."
"oh...yeah. sure."
he took a pen out and drew a squiggle on my right shoulder. then, he checked my record. nodding and smiling, he said "see you in a little while."
and then he was gone
i shook inside. earlier, i had felt like my bones were cold. not my skin. not my muscles....but my very bones.
it was a hard feeling to let go of.
soon, a nurse came to wheel me out. she asked my name, and birthdate. she helped me to the wheelchair, and hooked my iv to the stand connected to it.
by then i was the last person in the area. there had been a young girl there, who cried on the way to the surgery. her parents couldn't go with her to the operating area, which was sad. it might have helped her....
i got wheeled into the operating area. it was warm (per the surgeon's instructions.) the nurse helped me lie down on the table. there was a foam-ish pillow under my head. they wrapped plastic things around my legs. another woman asked what my blood pressure usually was. she nodded when i told her.... my low blood pressure always seems to catch medical people off guard.
someone put a mask loosely over my mouth and nose, without strapping it on. she said that i would be getting oxygen at first. they attached planks to the table so i could rest my arms on them. i heard the sound of anonymous country music.... they said now they would be giving me the anesthetics .....
and soon i was off to sleep.
i woke up in bed. i was very foggy. the nurse fed me ice chips for a-while. another nurse removed the leg coverings. i was asked if i were ok. it took a moment... then a moment more... as if i were a flower slowly opening up.....
a flower being encouraged to bloom faster in a non-pressure-like way.
i was wheeled back to the area i was before. i teared up, waiting for my belongings, my bearings, and my son. a nurse came by and said "oh no, it'll work out. you're going to be fine, right?" i said yes, it was just nerves.... she nodded, and understood.
soon, my son was there, and was nervously glad to see me. he stepped into the hall while i changed back into my clothes. it wasn't hard, but i wasn't a hundred percent there, so i went slow, even though it seemed like i was being rushed. (i totally get that attitude, though. if i wasn't encouraged on, i would have lingered, and wallowed, and that wouldn't have been good at all.)
they gave me a pepsi (my choice) and then water. they told me not to get my incision wet, and taught me how to work the drain i was wearing. (a jackson-pratt drain... i'd never had one before.) i was encouraged to get an appointment with the surgeon to get the drain out (which i got for as soon as possible -- seven days later.)
then my son got the car, and i was wheeled to the curb, and sent home.
i wasn't hungry, but i knew i had to eat. so, to qdoba we went, with good queso, good burrito, and good talk. as i ate, i got hungrier. it helped to be eating something that felt healthy, and light.
i must still drink water. i must try to up my fiber for at least a little while, because of the meds. i must take it easy if i want to go back to work wednesday.
i must stop writing about this, huh?
i'll try to sleep. i really didn't think i would write about it so soon, but i'm glad i can remember things... and i went with it.
here's to an easy week..... and hope for a good prognosis. i won't think about it until i get the call from my oncologist. if i do, i'll go mad.....
hope
Thursday, January 22, 2015
lumping it to-gether
went to the oncologist.
so, i got my blood drawn. i was told that when they remove a lymph node, i could never have blood drawn from that arm again. (nurse was very good. didn't feel the needle at all.)
waited in the waiting room long enough to heckle interviewers, commercials, and the weather with my daughter. while we were there, we saw this commercial for bladder control problems. it has this.... little pink walking bladder who grabs your hand, and wants to go to every bathroom it sees. i giggled a bit too much about this. it didn't help that my daughter had this "would you straighten up?" look on her face. (commercial here: https://www.youtube.com/watch?v=vqoykQ5804M )
then we went in to see the doctor.
the nurse took my vitals.
"i hear that when i get my lymph node out, i'm not supposed to get my blood drawn on that side."
"That's right."
"should i get my blood pressure done there, too?"
"No. Well, you can get the wrist blood pressure cuff done, but not the arm."
"oh. i also hear that ....well... that one arm will be slightly longer than the other...because...."
"Wait, what?"
"well, if you take the lymph nodes out, the arm won't have anything to close over and so it'll...."
i suppressed a grin. she suppressed a giggle.
"Well, um... I hadn't heard that before. But.....no."
she gave me a hug, and was out the door, still stifling laughter.
(a sense of humour is sometimes all the control we have over things.)
my oncologist came in. she already knew what was going on. it was like ....an interrupted conversation, even though i hadn't seen her in weeks. she didn't have records in her hand. she knew already what was up, and what was at stake..... so there was no wasted time paging through files.
i told her that i didn't understand why the radiologist thought it was infection, and the surgeon thought it was cancer. she said that the surgeon was known to be very direct, without a bedside manner, and that he saw things in an analytical way.
still... if they do find cancer, the plan is this: talk to dr selby in okc. see if i should go on watch and wait (where they check the progress of my case with serial imaging). or go on a chemo known as r-ice for two cycles. or have an autologous stem cell transplant (using my own stem cells).
i told her that at one point i had a lump underneath my breast that went away. she asked me where it was, and if she could feel it. she didn't. that lead her to want to feel the lump in question. (she had asked me before if i felt it... i said i didn't know how to feel it, or even what to feel).
she could not feel the lump under my arm.
she tried from the front. she tried from the back, like the radiologist had. she apologized for pushing hard.... i told her to push as hard as she needed too. i had my arms extended out, as if in the worst tsa scan ever....
and she couldn't feel nothing.
she said the surgeon will still go in, and take something. he will do an ultrasound and probably take out the biggest lymph node he can see, and the area around it. it could take out some of the scar tissue, as well. then, they would send it to pathology.
surgery will be done on monday.... i could get phoned the results from three days after.... to one week after.
and then we go from there.....
the nurse asked me, pretty early on, if i was in any pain. i told her no. i'm still not in pain. i'm numb, and cautious, and on edge, and worried....
and i want it all to end.
but, i'm a bit more hopeful. i'll keep drinking all the water in town, and eating the yogurt. (oh, and these bugles, too. ) i feel like every time i drink this cold water, that i'm washing away some of the tension i'm feeling.....
water's always been good to me. i need to go to the river soon, and walk the bridge......
and think on all these things......
so, i got my blood drawn. i was told that when they remove a lymph node, i could never have blood drawn from that arm again. (nurse was very good. didn't feel the needle at all.)
waited in the waiting room long enough to heckle interviewers, commercials, and the weather with my daughter. while we were there, we saw this commercial for bladder control problems. it has this.... little pink walking bladder who grabs your hand, and wants to go to every bathroom it sees. i giggled a bit too much about this. it didn't help that my daughter had this "would you straighten up?" look on her face. (commercial here: https://www.youtube.com/watch?v=vqoykQ5804M )
then we went in to see the doctor.
the nurse took my vitals.
"i hear that when i get my lymph node out, i'm not supposed to get my blood drawn on that side."
"That's right."
"should i get my blood pressure done there, too?"
"No. Well, you can get the wrist blood pressure cuff done, but not the arm."
"oh. i also hear that ....well... that one arm will be slightly longer than the other...because...."
"Wait, what?"
"well, if you take the lymph nodes out, the arm won't have anything to close over and so it'll...."
i suppressed a grin. she suppressed a giggle.
"Well, um... I hadn't heard that before. But.....no."
she gave me a hug, and was out the door, still stifling laughter.
(a sense of humour is sometimes all the control we have over things.)
my oncologist came in. she already knew what was going on. it was like ....an interrupted conversation, even though i hadn't seen her in weeks. she didn't have records in her hand. she knew already what was up, and what was at stake..... so there was no wasted time paging through files.
i told her that i didn't understand why the radiologist thought it was infection, and the surgeon thought it was cancer. she said that the surgeon was known to be very direct, without a bedside manner, and that he saw things in an analytical way.
still... if they do find cancer, the plan is this: talk to dr selby in okc. see if i should go on watch and wait (where they check the progress of my case with serial imaging). or go on a chemo known as r-ice for two cycles. or have an autologous stem cell transplant (using my own stem cells).
i told her that at one point i had a lump underneath my breast that went away. she asked me where it was, and if she could feel it. she didn't. that lead her to want to feel the lump in question. (she had asked me before if i felt it... i said i didn't know how to feel it, or even what to feel).
she could not feel the lump under my arm.
she tried from the front. she tried from the back, like the radiologist had. she apologized for pushing hard.... i told her to push as hard as she needed too. i had my arms extended out, as if in the worst tsa scan ever....
and she couldn't feel nothing.
she said the surgeon will still go in, and take something. he will do an ultrasound and probably take out the biggest lymph node he can see, and the area around it. it could take out some of the scar tissue, as well. then, they would send it to pathology.
surgery will be done on monday.... i could get phoned the results from three days after.... to one week after.
and then we go from there.....
the nurse asked me, pretty early on, if i was in any pain. i told her no. i'm still not in pain. i'm numb, and cautious, and on edge, and worried....
and i want it all to end.
but, i'm a bit more hopeful. i'll keep drinking all the water in town, and eating the yogurt. (oh, and these bugles, too. ) i feel like every time i drink this cold water, that i'm washing away some of the tension i'm feeling.....
water's always been good to me. i need to go to the river soon, and walk the bridge......
and think on all these things......
Tuesday, January 20, 2015
appointment
on monday, january 26, i have to be at the surgery place at 6:30 am.
i'm not supposed to eat after midnight the night before.
i'm not supposed to drink after midnight the night before.
i should take no medication (or vitamins) the day of the surgery.
i can brush my teeth, but not swallow liquid.
i'm supposed to go to the admitting area, and say that i'm a same day surgery.
no pressure. no worries. i got this. the son wants to drive me this time, and the daughter's helping with other things i must do during the week.
and yet right now i'm chilled to the bone (nerves) and my heart is beating hard.
this has got to work. i've got to conquer this. i'll go mad if it's not all out of me.
why did my body turn so bad against me?
sigh....
i'm not supposed to eat after midnight the night before.
i'm not supposed to drink after midnight the night before.
i should take no medication (or vitamins) the day of the surgery.
i can brush my teeth, but not swallow liquid.
i'm supposed to go to the admitting area, and say that i'm a same day surgery.
no pressure. no worries. i got this. the son wants to drive me this time, and the daughter's helping with other things i must do during the week.
and yet right now i'm chilled to the bone (nerves) and my heart is beating hard.
this has got to work. i've got to conquer this. i'll go mad if it's not all out of me.
why did my body turn so bad against me?
sigh....
Monday, January 19, 2015
with cutting precision
let me just tell this.
went to the surgeon thirty minutes early. that was ok. there was paperwork, and water to drink, and comfy couches..... my daughter and i heckled "let's make a deal" on the television, talked of oscars and tumblr and marvel and worse case scenarios.....
and then i went in.
weight. height. blood pressure. temperature. outdated decorations on the wall (said my daughter.)
we were on the fourth floor, so i was able to look out windows and see the world.
soon the doctor came in, with the nurse.
i don't remember much of exacts for some reason..... must be the two antibiotics fighting in me.
he sat me on the table. he told me to unbutton. he felt, and said that yes, there was a lump there.
then he said he was going to take it out. next week.
any questions?
yes, first sit down, and don't act like you're bolting out the door. second, do you think it's an infection?
no.
somewhere in there, he said it might be a swollen lymph node, but it was all about cancer, and getting it out. he did not know what the next step was beyond the operation, if they found cancer.
but he was acting, and saying that he was going to take the cancer out.
thank you.
we'll call you.
and he left, and i cried.
my daughter hugged me as best as she could. awkwardly, but with feeling.
what else could she do?
why did i cry? because the radiologist was more focused on the fact it was an infection, than cancer. that the surgeon was quick, and terse, like my old doctor.
because i was mourning me. who knows why.
we went to taco bueno after. in the background, i hear "brave" by sara bareillies. that was my chemo song. the fight is not over.
i'm not brave. or i'm brave, but the marvel comics version of brave, with self loathe and angst.
i see my oncologist thursday. i can be real with her. worst case scenario, please? what would be next? have you seen this before?
why, with it being on one side, and in one area, is it still there? why is it so stubborn?
why does my cancer have to be like me?
i don't mind being bald again. i don't mind more radiation. i just don't want to leave my job again. i just want to battle, but hide it.
i just want to be me, without this hanging over me all the time.
whoever me is
went to the surgeon thirty minutes early. that was ok. there was paperwork, and water to drink, and comfy couches..... my daughter and i heckled "let's make a deal" on the television, talked of oscars and tumblr and marvel and worse case scenarios.....
and then i went in.
weight. height. blood pressure. temperature. outdated decorations on the wall (said my daughter.)
we were on the fourth floor, so i was able to look out windows and see the world.
soon the doctor came in, with the nurse.
i don't remember much of exacts for some reason..... must be the two antibiotics fighting in me.
he sat me on the table. he told me to unbutton. he felt, and said that yes, there was a lump there.
then he said he was going to take it out. next week.
any questions?
yes, first sit down, and don't act like you're bolting out the door. second, do you think it's an infection?
no.
somewhere in there, he said it might be a swollen lymph node, but it was all about cancer, and getting it out. he did not know what the next step was beyond the operation, if they found cancer.
but he was acting, and saying that he was going to take the cancer out.
thank you.
we'll call you.
and he left, and i cried.
my daughter hugged me as best as she could. awkwardly, but with feeling.
what else could she do?
why did i cry? because the radiologist was more focused on the fact it was an infection, than cancer. that the surgeon was quick, and terse, like my old doctor.
because i was mourning me. who knows why.
we went to taco bueno after. in the background, i hear "brave" by sara bareillies. that was my chemo song. the fight is not over.
i'm not brave. or i'm brave, but the marvel comics version of brave, with self loathe and angst.
i see my oncologist thursday. i can be real with her. worst case scenario, please? what would be next? have you seen this before?
why, with it being on one side, and in one area, is it still there? why is it so stubborn?
why does my cancer have to be like me?
i don't mind being bald again. i don't mind more radiation. i just don't want to leave my job again. i just want to battle, but hide it.
i just want to be me, without this hanging over me all the time.
whoever me is
Saturday, January 17, 2015
side effects
side effects with the two antibiotics running through my system:
nervousness
tingly hands
blurred vision
hungry hungry hippo syndrome
constipation (?)
i need to drink more water to-day. i want to drink, but i find myself too busy sometimes to get to the water.
this morning, i cried for no reason. well, there was a reason, but it was my own fault, so it's not really a reason. i'm tired of talking through intermediaries to get my message across. communication should be direct, not diluted.
i just want peace, and i can't have it.
nervousness
tingly hands
blurred vision
hungry hungry hippo syndrome
constipation (?)
i need to drink more water to-day. i want to drink, but i find myself too busy sometimes to get to the water.
this morning, i cried for no reason. well, there was a reason, but it was my own fault, so it's not really a reason. i'm tired of talking through intermediaries to get my message across. communication should be direct, not diluted.
i just want peace, and i can't have it.
Thursday, January 15, 2015
pet scan results
the facts as i know them. (with strange observations interspersed)
summary: a lymph node in the middle of the radiologist's working area lit up. is it an infection? is it cancer? we don't know. let's give you levofloxacin and sulfameth/triemthoprim as antibiotics to fight the infection, and have you see a surgeon for pre-op. we want that lymph node out of there. then we'll see if it's cancerous. if so... more chemo, or rituxin, or a bone marrow transplant.
now, the narrative
i woke late, but since the radiologist was just down the street, it didn't matter. as i walked to the car, i saw an ambulance parked in front of a neighbour's house. i paused, and thought good thoughts about the sick person, and then was on my way.
i turned on the radio to distract my mind from the shivers that were running down my spine. soon enough, i was singing along with ccr.... before i realised what the song was.
"bad moon on the rise."
i went into the waiting room of the radiologist's office. i was pretty sure i was supposed to be in the waiting room, instead of in the back treatment room. the window between the receptionist and me was closed, and there were no directions on the glass. she didn't acknowledge me, and i sat for ten minutes. finally, i walked up, and tapped on the glass.
"oh, i thought you were waiting on someone!"
a signature, and a whisk, and i found myself in the back examining room.
i didn't lose weight.
soon, the radiologist came in. she said "let's see what's going on." and opened my chart as if she hadn't seen it before. as if she didn't know what was going to happen. as if it were a novel she was picking up, and catching up on after a long day.
she said that there was an area that lit up... right in the middle of her field.
1.5 cm of uncertainty.
then she said she would bring it up on the computer.
"how are you doing?" she asked, as she booted up the computer. i honestly told her that i wasn't doing good. "oh. why?" well, because i was in suspense over this pet scan and.... "oh. oh, yes! i see."
i see.
she looked at the computer, and bade me come over with her. discouraged, and with eyes filled with tears, i did not join her.. again, she said it was a lit up lymph node. right in the middle of the field that she radiated. she began to say that i shouldn't worry.... that it was probably an infection. she was going to put me on an antibiotic... and i i needed to be sure to eat lots of yogurt with it.
she told me she was going to go call my oncologist. and text a surgeon.
she left the room. i got up, and paced. my right eye was suddenly burning. both eyes were full of tears. deep, quiet breaths were taken. i wasn't shell shocked, but i wasn't there, either.
i just wanted to be dead.
she came back in. the surgeon also suggested i take another antibiotic.... was i allergic to sulfur? with this one, i need to remember to drink a lot of water, because this pill is prone to giving kidney ailments. i was to see the surgeon on monday....
so... am i going to get the lymph node taken out?
well, we don't want to give you lymphedema, but that lymph node needs to be taken out. they will do pre-op stuff on monday....
if it's cancer, then i will have to do a different version of chemo. or rituxin. or a bone marrow transplant.
if it's not, then i get treated for infection, and i get to eat the jamie lee curtis yogurt.
then she said let's look at the good things. it was only in that area. on that side. in that place. nowhere else. it just may be one stubborn leftover lymph node that was being persnickety.
during the visit, she checked under my arm, and said she could sort of feel the lump. i told her about the lump underneath my breast that came, and went away. she checked there, too, and said she couldn't feel nothing.
she gave me an afternoon appointment to the surgeon. she gave me two prescriptions. she said she wanted to see me back in three months.... and she asked me to call and let her know what was going on.
i have most of next week off, luckily. a long enough time to drink water, eat all the yogurt, and worry like hell.
i was it was wise to lower my expectations. i was trying hard to do that.... but when i teared up, i realized that my heart defies everything..... including reason.
do i think i'll die? no. do i care if i lose my hair again? no. i am worried about lost wages, more than anything..... but that's putting the cart before the horse.
do i want to die? yes. to save money, worry, and torture of my family.
but.... that's not an option. it's time to live, and create again... consoling myself with the echo of my words, and the hug of a heavy coat that still smells like the ocean air....
let it fade
summary: a lymph node in the middle of the radiologist's working area lit up. is it an infection? is it cancer? we don't know. let's give you levofloxacin and sulfameth/triemthoprim as antibiotics to fight the infection, and have you see a surgeon for pre-op. we want that lymph node out of there. then we'll see if it's cancerous. if so... more chemo, or rituxin, or a bone marrow transplant.
now, the narrative
i woke late, but since the radiologist was just down the street, it didn't matter. as i walked to the car, i saw an ambulance parked in front of a neighbour's house. i paused, and thought good thoughts about the sick person, and then was on my way.
i turned on the radio to distract my mind from the shivers that were running down my spine. soon enough, i was singing along with ccr.... before i realised what the song was.
"bad moon on the rise."
i went into the waiting room of the radiologist's office. i was pretty sure i was supposed to be in the waiting room, instead of in the back treatment room. the window between the receptionist and me was closed, and there were no directions on the glass. she didn't acknowledge me, and i sat for ten minutes. finally, i walked up, and tapped on the glass.
"oh, i thought you were waiting on someone!"
a signature, and a whisk, and i found myself in the back examining room.
i didn't lose weight.
soon, the radiologist came in. she said "let's see what's going on." and opened my chart as if she hadn't seen it before. as if she didn't know what was going to happen. as if it were a novel she was picking up, and catching up on after a long day.
she said that there was an area that lit up... right in the middle of her field.
1.5 cm of uncertainty.
then she said she would bring it up on the computer.
"how are you doing?" she asked, as she booted up the computer. i honestly told her that i wasn't doing good. "oh. why?" well, because i was in suspense over this pet scan and.... "oh. oh, yes! i see."
i see.
she looked at the computer, and bade me come over with her. discouraged, and with eyes filled with tears, i did not join her.. again, she said it was a lit up lymph node. right in the middle of the field that she radiated. she began to say that i shouldn't worry.... that it was probably an infection. she was going to put me on an antibiotic... and i i needed to be sure to eat lots of yogurt with it.
she told me she was going to go call my oncologist. and text a surgeon.
she left the room. i got up, and paced. my right eye was suddenly burning. both eyes were full of tears. deep, quiet breaths were taken. i wasn't shell shocked, but i wasn't there, either.
i just wanted to be dead.
she came back in. the surgeon also suggested i take another antibiotic.... was i allergic to sulfur? with this one, i need to remember to drink a lot of water, because this pill is prone to giving kidney ailments. i was to see the surgeon on monday....
so... am i going to get the lymph node taken out?
well, we don't want to give you lymphedema, but that lymph node needs to be taken out. they will do pre-op stuff on monday....
if it's cancer, then i will have to do a different version of chemo. or rituxin. or a bone marrow transplant.
if it's not, then i get treated for infection, and i get to eat the jamie lee curtis yogurt.
then she said let's look at the good things. it was only in that area. on that side. in that place. nowhere else. it just may be one stubborn leftover lymph node that was being persnickety.
during the visit, she checked under my arm, and said she could sort of feel the lump. i told her about the lump underneath my breast that came, and went away. she checked there, too, and said she couldn't feel nothing.
she gave me an afternoon appointment to the surgeon. she gave me two prescriptions. she said she wanted to see me back in three months.... and she asked me to call and let her know what was going on.
i have most of next week off, luckily. a long enough time to drink water, eat all the yogurt, and worry like hell.
i was it was wise to lower my expectations. i was trying hard to do that.... but when i teared up, i realized that my heart defies everything..... including reason.
do i think i'll die? no. do i care if i lose my hair again? no. i am worried about lost wages, more than anything..... but that's putting the cart before the horse.
do i want to die? yes. to save money, worry, and torture of my family.
but.... that's not an option. it's time to live, and create again... consoling myself with the echo of my words, and the hug of a heavy coat that still smells like the ocean air....
let it fade
Friday, January 9, 2015
major pet scan
here's how it went.
not much sleep the night before. panic attacks, and tossing/turning.
woke on time (in fact a bit early) and made it to the place at 10:25.
was then told it was scheduled for 11am.
no worries. i moved my daughter's car around to a closer parking garage. (when they made the appointment for me, they asked if i knew where to park. i said i knew where i was going. if i had listened, i would have found out that there was a closer parking lot. i walked back to move the car to teach myself a lesson... always let people explain. always listen.)
(it's very brisk, and cold to-day. still shaking off the chills inside, with a coffee at hand.)
then, i sat in the waiting room ....and waited.
a couple of women were talking about the food situation at their house. it seems that one of them had permanent guests who were eating all the food, and not contributing. they found the mountain dew. the pizza pockets. the meat for the spaghetti. the whole ham in the fridge......
and i, who hadn't eaten since 10pm, was chuckling to myself, to keep down the hunger pangs.
then, they complained about how there was only one lady taking insurance information. then, they noticed cbs on the television.
"whut's going on?"
"well, some french guy drew some pictures of al kaida. then these buncha guys come into his office, and shot him."
"oh. well, why don't you get a padlock for the refrigertator?"
"i can't, and have regina get food, too. you know she can't barely open a screen door, much less learn a combination."
and so it went on....
i signed the papers needed (do you have a prime directive? i think was one of them), and got the bracelet. soon, i was in the back, getting the solution put in my veins, and resting for 45 minutes.
i actually slept. that helped.
i went to lie down at the scanning machine. i forgot that i had to lie down, and hold my hands over my head....without holding onto anything. it's harder than it seems, because there's a donut shaped cushion around your head, and you have to lie your arms on it... very difficult. my arms are still a bit sore from the tension of holding still.
but i won't complain. it's over, and now i have to work. (luckily) now i can think of other people, and help them....
and wait for thursday....
hope
not much sleep the night before. panic attacks, and tossing/turning.
woke on time (in fact a bit early) and made it to the place at 10:25.
was then told it was scheduled for 11am.
no worries. i moved my daughter's car around to a closer parking garage. (when they made the appointment for me, they asked if i knew where to park. i said i knew where i was going. if i had listened, i would have found out that there was a closer parking lot. i walked back to move the car to teach myself a lesson... always let people explain. always listen.)
(it's very brisk, and cold to-day. still shaking off the chills inside, with a coffee at hand.)
then, i sat in the waiting room ....and waited.
a couple of women were talking about the food situation at their house. it seems that one of them had permanent guests who were eating all the food, and not contributing. they found the mountain dew. the pizza pockets. the meat for the spaghetti. the whole ham in the fridge......
and i, who hadn't eaten since 10pm, was chuckling to myself, to keep down the hunger pangs.
then, they complained about how there was only one lady taking insurance information. then, they noticed cbs on the television.
"whut's going on?"
"well, some french guy drew some pictures of al kaida. then these buncha guys come into his office, and shot him."
"oh. well, why don't you get a padlock for the refrigertator?"
"i can't, and have regina get food, too. you know she can't barely open a screen door, much less learn a combination."
and so it went on....
i signed the papers needed (do you have a prime directive? i think was one of them), and got the bracelet. soon, i was in the back, getting the solution put in my veins, and resting for 45 minutes.
i actually slept. that helped.
i went to lie down at the scanning machine. i forgot that i had to lie down, and hold my hands over my head....without holding onto anything. it's harder than it seems, because there's a donut shaped cushion around your head, and you have to lie your arms on it... very difficult. my arms are still a bit sore from the tension of holding still.
but i won't complain. it's over, and now i have to work. (luckily) now i can think of other people, and help them....
and wait for thursday....
hope
Thursday, January 8, 2015
negotiations
let's not go into last night....except to remember:
don't run out of gas and
always clean your battery terminals.
to-day, i was supposed to be at the oncologist. i got a call saying she was sick, and that i need to call to reschedule. then, i got another message saying come on in. my phone was on vibrate, and i slept through the alarm. oops. no worries. i'm rescheduled for the 22, which is after the radiologist visit. good.
then the pet scan pre-billing person called:
have you got 3,09950?
no. i got $50.
well, acceptable down payment is $700.
well, my job can pay it all next month, when i give them the proper documentation. i've done it before.
ok. so 50?
yeah, 50.
see you to-morrow.
'member when i used to cry at finances like this? i'm still shaky, still broke, still.... scared, with money and physical problems. but... i'm better at negotiating. i guess that's a good thing.
so, eat a low fat meal to-night. zone out at pet to-morrow morning. probably go to work from there. (after chinese food, if i can scrape up a bit of extra money)
then wait for the 15th.
hope
don't run out of gas and
always clean your battery terminals.
to-day, i was supposed to be at the oncologist. i got a call saying she was sick, and that i need to call to reschedule. then, i got another message saying come on in. my phone was on vibrate, and i slept through the alarm. oops. no worries. i'm rescheduled for the 22, which is after the radiologist visit. good.
then the pet scan pre-billing person called:
have you got 3,09950?
no. i got $50.
well, acceptable down payment is $700.
well, my job can pay it all next month, when i give them the proper documentation. i've done it before.
ok. so 50?
yeah, 50.
see you to-morrow.
'member when i used to cry at finances like this? i'm still shaky, still broke, still.... scared, with money and physical problems. but... i'm better at negotiating. i guess that's a good thing.
so, eat a low fat meal to-night. zone out at pet to-morrow morning. probably go to work from there. (after chinese food, if i can scrape up a bit of extra money)
then wait for the 15th.
hope
Tuesday, January 6, 2015
when people pass (plus update)
stuart scott has passed on. a good place to start reading about him is here: http://espn.go.com/espn/story/_/id/12118296/stuart-scott-espn-anchor-dies-age-49
i looked up and down on different sites to see what kind of cancer he had, the same way i looked to see what kind of lymphoma jacqueline kennedy had. it's sad that he fought the beast three times, until he succumbed to it. it must be so hard to spend your time fighting, instead of living. i do like what he said, at the end of his life:
"when you die, it does not mean that you lose to cancer. you beat cancer by how you live, why you live, and in the manner in which you live."
there was a time you didn't know where stuart scott was in his fight with cancer. i have status updates, and a blog, and a little bit of poetry about it on g+. i think there's a type of dignity one has with battling cancer privately.... a dignity i don't have, i guess.
always the blabbermouth.
i thought all i was going to do was have a meeting with my oncologist on thursday. i just got a phone call. i get a pet scan on friday, and a follow up exam with the radiologist on the 15. just like that my whole week changes, and i have to work after i have the pet scan. that should be an interesting day.
so, a bit of suspense has been added, where just days ago there was none.
to be continued
i looked up and down on different sites to see what kind of cancer he had, the same way i looked to see what kind of lymphoma jacqueline kennedy had. it's sad that he fought the beast three times, until he succumbed to it. it must be so hard to spend your time fighting, instead of living. i do like what he said, at the end of his life:
"when you die, it does not mean that you lose to cancer. you beat cancer by how you live, why you live, and in the manner in which you live."
there was a time you didn't know where stuart scott was in his fight with cancer. i have status updates, and a blog, and a little bit of poetry about it on g+. i think there's a type of dignity one has with battling cancer privately.... a dignity i don't have, i guess.
always the blabbermouth.
i thought all i was going to do was have a meeting with my oncologist on thursday. i just got a phone call. i get a pet scan on friday, and a follow up exam with the radiologist on the 15. just like that my whole week changes, and i have to work after i have the pet scan. that should be an interesting day.
so, a bit of suspense has been added, where just days ago there was none.
to be continued
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