so, my ophthalmologist called. very informally. left a quick message.
i smiled faintly, and called him back. him, i can deal with. he's young, appreciative of humour, and someone who wants me to ask questions. good man.
so, i have irregular corneas. (dude, i'm irregular all over.)
he wants one of his partners to look at me, to make sure about the irregularity.
it could be that i have dry eyes, which would make the cornea appear irregular.
it could be that my cornea is changing, which would mean i need to be monitored each year for continual change, since the new toric lenses are helping me have great vision.
or it could mean that my cornea is changing significantly..... and that i will need surgery, and a cornea transplant in the future.
dr city (named by google voice) is hopeful. i'm not going blind. i'm not having wild difficulty. i'm just needing to be looked over, and kept track of.....
....like i am with everything else.
thing is, my eye doctor doesn't think the chemo did anything to my eyes. this is just a natural progression i get for being old.
so.... it's good that i went back to good old dr. city, instead of staying with the optometrist chain that gives me a new doctor at each visit, and perplexed looks every time i come in.
a blessing in disguise, in a way.
oh well.....
Tuesday, December 29, 2015
Monday, December 28, 2015
new doctor, old feelings
i have a new oncologist.
i should have expected this when everyone at work was talking about having to switch over to another hospital system. i just thought that you didn't change oncologists. who would stop care so specific and careful over insurance?
so, i went in to see the new oncologist.
he seemed ok. he wore a suit, and was ...um... there. then he asked for a pet scan. i hadn't had one in a-while, and it made sense that he wanted to get the full picture.
well, there was a light up over the left groin. he wants to do another pet scan in march. ok.
thing is, he isn't very personable. he tends to spock things, and not in a good way. matter of fact, and a cold undertone, he is. (i'm upset and weary when i think of him. that may be why it's been so hard to write about him.)
so, when he told me that i had an irregularity (a 9 mm light up), i cried. and tried to control myself.
and he....just looked at me. and said nothing.
just like enigma.
so, i've been on watch and wait, basically. (albeit unofficially. they didn't call it "watch and wait" but it's the same idea.)
and.... now there's this lump.
a day ago, my breast was feeling tender. now, there's this lump near my underarm, but not under it. i called, and left a message for the nurse.
now, when i called and left a message with the old oncologist, she took until the afternoon to call me back. well, i don't know if it's because of the holidays, or what, but i got a call very quickly. an australian nurse asked me what was going on, and tried to get all the details.
she said she would tell the new oncologist about what was going on, and that they would see me on the 14th, for lab work and exam. that was awesome news to me, because he hadn't labbed me at all since the first time he saw me.
my old oncologist labbed me every time she saw me. my old oncologist gave me two antibiotics for every infection i had. my old oncologist hugged me, and really let me know that she was part of my fight, not an observer of it.
i don't want to see the new oncologist, but maybe i can.... at the very least.......i can help him help me.
one hopes.....
i should have expected this when everyone at work was talking about having to switch over to another hospital system. i just thought that you didn't change oncologists. who would stop care so specific and careful over insurance?
so, i went in to see the new oncologist.
he seemed ok. he wore a suit, and was ...um... there. then he asked for a pet scan. i hadn't had one in a-while, and it made sense that he wanted to get the full picture.
well, there was a light up over the left groin. he wants to do another pet scan in march. ok.
thing is, he isn't very personable. he tends to spock things, and not in a good way. matter of fact, and a cold undertone, he is. (i'm upset and weary when i think of him. that may be why it's been so hard to write about him.)
so, when he told me that i had an irregularity (a 9 mm light up), i cried. and tried to control myself.
and he....just looked at me. and said nothing.
just like enigma.
so, i've been on watch and wait, basically. (albeit unofficially. they didn't call it "watch and wait" but it's the same idea.)
and.... now there's this lump.
a day ago, my breast was feeling tender. now, there's this lump near my underarm, but not under it. i called, and left a message for the nurse.
now, when i called and left a message with the old oncologist, she took until the afternoon to call me back. well, i don't know if it's because of the holidays, or what, but i got a call very quickly. an australian nurse asked me what was going on, and tried to get all the details.
she said she would tell the new oncologist about what was going on, and that they would see me on the 14th, for lab work and exam. that was awesome news to me, because he hadn't labbed me at all since the first time he saw me.
my old oncologist labbed me every time she saw me. my old oncologist gave me two antibiotics for every infection i had. my old oncologist hugged me, and really let me know that she was part of my fight, not an observer of it.
i don't want to see the new oncologist, but maybe i can.... at the very least.......i can help him help me.
one hopes.....
Wednesday, July 29, 2015
pet scan results
sorry it's been so long since my last entry. let's bring you up to speed, ok?
on tuesday, july 7, i had a pet scan, this time at st francis' cancer center. (my insurance changed.) it was very different from hillcrest. (as it is when you move from a hospital set in the seventies, into a a new place with state-of-the-art technology.)
i went in (after paying $100 more than i thought i was going to pay), and was told to go to a room. it had a comfy chair, and a big screen tv... all for me :) they gave me a bottled water, and injected the solution. i rested, watching everything from an old "highway patrol" episode to earring ads on the shopping network.
soon, i was in the pet scan room. instead of a long, claustrophobic tunnel, it was a friendly, cancer-seeking donut that i floated through in about twenty minutes. after that, i walked out the door, looking out at the rain...graham crackers in hand, uncertainty in heart.
on thursday, july 23, i went to my home cancer center. my oncologist was on maternity leave, so i was to see the nurse-practitioner on duty. i came in, after a quick blood scan. a nurse took my vitals, then told me to circle what symptoms i had on a piece of paper full of creative complaints. the nurse told me who i was about to see was big on symptoms. i haloed a few items, and waited.
no one looked at that piece of paper through the entire visit.
the nurse practitioner came in. she cut right to the chase, which made me very grateful. i had a 1.5 cm thing that lit up underneath my arm. she used many complicated words... terms that nurses used to explain things to doctors. i had to ask what every other word meant. i felt stupid, awkward, and very sad. it was hard to hide my fear, but i tried my best.
i was never brave.
i was told that i needed to check my affected area diligently. i was on "watch and wait", a term i always read with trepidation every time i saw it in the cancer books. watch for whatever was out of the ordinary, and report it as soon as possible. if nothing happened, then i would be seen in three months, by my regular oncologist.
be ever diligent.
i left the office in shaky tears. the person i was with didn't know what to say... it was good that nothing was said. empty words don't do much at times like that.
i went home, and tried to forget.
on the 28, early in the morning, the nurse practitioner left me a voicemail message. she told me she wanted to talk to me about my pet scan results. i called her back an hour later. my butt called her two hours later. i called her again to apologize over my butt.
no answer, all day.
i got no sleep, thinking "if she's calling, but not calling back, it isn't important. or, it is, but she's way too busy to call. or....or... or...."
the next day, i checked my charts online. there wasn't anything in the radiology section past the last pet scan. no clue.
at 2:34 pm, she finally called me back. she was full of apologies. she was busy yesterday. to-day, she had child care issues. she was off balanced a bit.... and i was immediately at ease.
no worries. just tell me, i said silently to myself.
she did.
i was told to forget everything i had heard before she had read the wrong pet scan, and was telling me the information that lead to my lumpectomy, instead of the results of the scan taken after the operation.
i was cautiously optimistic.
she told me the good news. i didn't have any light ups. there were swollen areas right where they were supposed to be, in the area where i had my operation. there was a new bit of swelling at the top of my legs, but it wasn't worth any worry.
(i felt foolish. the results she told me should have sounded familiar, but because of the way she communicated, and the pessimistic view i had about the whole thing, i took it as new news. and, to tell you the truth, i'm still acting as if i'm under that "watch and wait" umbrella. maybe that's good. maybe i need to live in caution.)
i was cautiously optimistic.
she told me the good news. i didn't have any light ups. there were swollen areas right where they were supposed to be, in the area where i had my operation. there was a new bit of swelling at the top of my legs, but it wasn't worth any worry.
(i felt foolish. the results she told me should have sounded familiar, but because of the way she communicated, and the pessimistic view i had about the whole thing, i took it as new news. and, to tell you the truth, i'm still acting as if i'm under that "watch and wait" umbrella. maybe that's good. maybe i need to live in caution.)
i still will talk to my oncologist in three months. even with her apologies, the nurse practitioner used words that were long, and hard to understand. she would not say that there wasn't any cancer, only that there weren't any light ups. she had said before that if the cancer wasn't seen in me for two years, that it was a fine sign that it wouldn't return.
i need to check the dates (i really need to write them all down on one post, anyway) but i think i'm close to that mark.
and then i'll be healed.... inside.......
pardon me if i'm still healing, emotion wise.
i have to learn trust again
Thursday, July 2, 2015
dipping a toe in
i guess it's time for a sit rep, huh? been long enough.
in a week, i'm supposed to have a pet scan, with a new hospital. (gotta love insurance.) when they were giving me an option for appointments, the lady said "we could schedule you to-morrow, but i'm sure you're not ready for it."
not physically. mentally, i was ready three months ago.
anyway, it will be good to put a period at the end of this sentence. yes, i understand that the surgeon "knows" that he got all the suspicious stuff out with the lumpectomy. me, i gotta see proof..... and hope that nothing new has cropped up.
it's the optimist in me.
i've had a dilly of a time with my eyes. they've been getting progressively drier even before chemo, but now.... worse. the edges of my eyelids are starting to stick to-gether in the morning. my vision is out of focus at the beginning of the day... not good for this 9-1 working girl. luckily, i've found some scrub for the eyelids, and have been putting on the protopic very sparingly on my face. oh, and i got a cool mist humidifier. did you know that a window ac dries out the air in the room? i don't need that, that's for sure.
(pardon me. i've just watched a few episodes of m*a*s*h*, so i sound a bit...different in my writing voice. about time that i've gotten better, though. i need to straighten myself up, and fly right, like i know i can. no more babying myself. yeah, let's see how long that'll last.....)
i long for a time where i don't talk about my ailments first, then my accomplishments. i don't bombard my sickness with everyone, but i'm sure the ones close to me are a bit tired of hearing about my illnesses. my mother used to repeat herself over and over again.... i fear i'm doing the same.
i want to go back to the fearless me again. where did she go?
so, i'm drinking more water. got more fruit. hoping to get more veggies, or at least veggy juice. almost said yes to a full time job... now i need to get creative, and make my part time job count, but not rule my life. if i keep saying i can't do a full time job, then i need to stop slacking with all the free time i say i need... and really do something in life.
i need to stop lamenting the past..... and make the future brighter. for her. for them. for him. maybe one day... for me.
time starts now......
in a week, i'm supposed to have a pet scan, with a new hospital. (gotta love insurance.) when they were giving me an option for appointments, the lady said "we could schedule you to-morrow, but i'm sure you're not ready for it."
not physically. mentally, i was ready three months ago.
anyway, it will be good to put a period at the end of this sentence. yes, i understand that the surgeon "knows" that he got all the suspicious stuff out with the lumpectomy. me, i gotta see proof..... and hope that nothing new has cropped up.
it's the optimist in me.
i've had a dilly of a time with my eyes. they've been getting progressively drier even before chemo, but now.... worse. the edges of my eyelids are starting to stick to-gether in the morning. my vision is out of focus at the beginning of the day... not good for this 9-1 working girl. luckily, i've found some scrub for the eyelids, and have been putting on the protopic very sparingly on my face. oh, and i got a cool mist humidifier. did you know that a window ac dries out the air in the room? i don't need that, that's for sure.
(pardon me. i've just watched a few episodes of m*a*s*h*, so i sound a bit...different in my writing voice. about time that i've gotten better, though. i need to straighten myself up, and fly right, like i know i can. no more babying myself. yeah, let's see how long that'll last.....)
i long for a time where i don't talk about my ailments first, then my accomplishments. i don't bombard my sickness with everyone, but i'm sure the ones close to me are a bit tired of hearing about my illnesses. my mother used to repeat herself over and over again.... i fear i'm doing the same.
i want to go back to the fearless me again. where did she go?
so, i'm drinking more water. got more fruit. hoping to get more veggies, or at least veggy juice. almost said yes to a full time job... now i need to get creative, and make my part time job count, but not rule my life. if i keep saying i can't do a full time job, then i need to stop slacking with all the free time i say i need... and really do something in life.
i need to stop lamenting the past..... and make the future brighter. for her. for them. for him. maybe one day... for me.
time starts now......
Tuesday, May 5, 2015
bumpy roads
i cried in front of my son just now.
i've had trouble with my eyes again. they are watery, and tired, and i can't keep contacts in them. they are sensitive to light, and crusty in the morning. i want to say it's allergies, but i'm not sure.
i know...i know... i said i would go to a doctor. i will to-morrow, i promise.
i was talking to my son about plays, and his life, and things..... and i told him i got overwhelmed. i told him that i will stop, in mid-sentence, and search for words. he told me everyone does it. i said no, it's different.... i can see the object, and touch it with my mind, but it takes a-while to say the word. and, when i stop in mid-sentence, people think i'm done talking, and barrel on through with the conversation....
and that's when i cried a little cry.
i said i was stupid, and old. he listened. i said going to the doctor would help. he said it would tremendously. i told him that he could have said "you aren't stupid. you aren't tired."
"i could say those things.....but you already know that."
wise man.
i'm tired. i need to get better sleep. i worry too much. will it come back? are my eyes a symptom? will my skin ever be 100% clear?
will i ever be normal?
in the world right now, people are worried about finding loved ones in earthquakes. they search for peace on their streets, and justice for their brothers. they hope to stop hurting worldwide....
i'm so fucking self centered.
i'll get over this hump, and be useful again. the rain will not fall for so long this time. until then, i will be positive and hopeful for others..... and write out what hell is inside.
it's what i do best.......
i've had trouble with my eyes again. they are watery, and tired, and i can't keep contacts in them. they are sensitive to light, and crusty in the morning. i want to say it's allergies, but i'm not sure.
i know...i know... i said i would go to a doctor. i will to-morrow, i promise.
i was talking to my son about plays, and his life, and things..... and i told him i got overwhelmed. i told him that i will stop, in mid-sentence, and search for words. he told me everyone does it. i said no, it's different.... i can see the object, and touch it with my mind, but it takes a-while to say the word. and, when i stop in mid-sentence, people think i'm done talking, and barrel on through with the conversation....
and that's when i cried a little cry.
i said i was stupid, and old. he listened. i said going to the doctor would help. he said it would tremendously. i told him that he could have said "you aren't stupid. you aren't tired."
"i could say those things.....but you already know that."
wise man.
i'm tired. i need to get better sleep. i worry too much. will it come back? are my eyes a symptom? will my skin ever be 100% clear?
will i ever be normal?
in the world right now, people are worried about finding loved ones in earthquakes. they search for peace on their streets, and justice for their brothers. they hope to stop hurting worldwide....
i'm so fucking self centered.
i'll get over this hump, and be useful again. the rain will not fall for so long this time. until then, i will be positive and hopeful for others..... and write out what hell is inside.
it's what i do best.......
Tuesday, April 28, 2015
oncologist remission visit
i went in to see the oncologist bright and early, and on time.... walking across the parking lot with shaking legs, and downturned face.
i don't know why it's gotten worse every time i see a doctor. perhaps because i have more time in between to act normal.
i waited in line to pay my co-pay. across from me in line was this beautiful thin lady, with an infinity scarf floating around her neck. she had a smooth, bald head that i was instantly envious of. (my bald head was always wrinkly, as if it were imprinting the brain underneath.)
i told her that her scarf looked lovely.... like beautiful watercolours. she smiled brightly. she might have smiled more if i said i liked her big ole bald head, but i resisted the urge. she was carrying a big purse.
co-pay was more this time around, and they asked me to take a form to fill out as i went on with my visit. yay! homework!
then i was immediately sent over to the lab waiting area. i was supposed to be at work in three hours... it seemed like i was going to have plenty of time to wait.
soon i was sitting at the little makeshift desk thing, waiting for my blood to be drawn.
a lady across from me sat down, with fear in her eyes. a nurse asked her questions she wasn't prepared for.
nurse: "do you have a port?"
lady: "uh....no."
nurse: "are you going to get a port?"
lady: "uh.....i don't know?"
me: "would you like some port?'
lady: "yes." (giggling)
it helps to make other smile.... especially when your own smile is far away.
soon i was in the doctor's waiting area.... it was too overcast to take many pictures. i noticed they had a book sale area... i have to remember to bring interesting books in. very soon, i was escorted back to the doctor area.
the nurse asked if i was all right. i told her i was ok, but nervous. she didn't blame me. she took my weight, and lead me into the examining room.
she checked my blood pressure, and told me i had great numbers. she was trying to bolster me up a bit... it helped. then, she went down the list of my prescriptions, to whittle them down to things i was taking at the moment. i told her i was just taking vitamins, zyrtec, and an occasional big ass ibuprofen. (i love the big ass ibuprofen. they last a whole day, and really help with the pain i have.)
soon, my dear oncologist came in. she had an observing doctor with her... someone who wanted to see if she wanted to be in the cancer field. i didn't mind. lady was lucky to have the best teacher leading her around.
she asked how i was. i told her about how the radiologist was concerned about my right arm. she asked if they had set up an appointment for a scan. i said no, but showed both arms to her. she didn't see any difference, and didn't act concerned about it.
(i almost don't want to go back to the radiologist. i really feel her job is done. i have plenty of time to cancel my appointment. i really have to think on this.....)
she checked my spleen...liver... ankles.... lymph nodes in the neck, and underarm. her touch was strong, and assured. i was sure that nothing would get past her exam.
she made things right.
i talked to the new doctor, telling her that it was hard coming into the cancer place sometimes. she said that it was probably the building. i said yes, as well as the smells, and the sounds. they both nodded their heads vigorously. it felt good to be understood.
this time, my oncologist made sure to say that what i was feeling was normal... after all, i had something that was very much like post traumatic stress disorder.
when i had my first cesarean, i was told i had had a major operation. i pooh poohed it, and tried to walk around like i owned the place. i paid for it later with severe postpartum depression. i try my best to belittle the traumas i've felt in life.... never to deal with them until it's too late.
hopefully by writing, and talking, reading and listening i can learn to live again.
i. just. don't. know.
in the midst of our talking, i told my oncologist that i didn't even know if i was in remission. she said that, to her, i was indeed in remission. she wanted to give me another pet scan in three months, to be sure.
i haven't been sleeping well lately. i haven't been eating right, either. i'm going into the free clinic i have with my insurance wednesday, to make sure my eyes are not infected. (i wake up in the morning, and my eyes are fused shut. yeah, i know. ew. could it be allergies? intense dry eye? infection? we will see.)
also, i've paid all but one bill having to due with the recent cycle of things (pet scan/lymph node removal). it's great to have my work help me, with their medical compensation. it makes it that much easier to face the future, with the various "are you ok?" pet scans to follow.
the less to worry about, the better, i say......
and so it goes.
i don't know why it's gotten worse every time i see a doctor. perhaps because i have more time in between to act normal.
i waited in line to pay my co-pay. across from me in line was this beautiful thin lady, with an infinity scarf floating around her neck. she had a smooth, bald head that i was instantly envious of. (my bald head was always wrinkly, as if it were imprinting the brain underneath.)
i told her that her scarf looked lovely.... like beautiful watercolours. she smiled brightly. she might have smiled more if i said i liked her big ole bald head, but i resisted the urge. she was carrying a big purse.
co-pay was more this time around, and they asked me to take a form to fill out as i went on with my visit. yay! homework!
then i was immediately sent over to the lab waiting area. i was supposed to be at work in three hours... it seemed like i was going to have plenty of time to wait.
soon i was sitting at the little makeshift desk thing, waiting for my blood to be drawn.
a lady across from me sat down, with fear in her eyes. a nurse asked her questions she wasn't prepared for.
nurse: "do you have a port?"
lady: "uh....no."
nurse: "are you going to get a port?"
lady: "uh.....i don't know?"
me: "would you like some port?'
lady: "yes." (giggling)
it helps to make other smile.... especially when your own smile is far away.
soon i was in the doctor's waiting area.... it was too overcast to take many pictures. i noticed they had a book sale area... i have to remember to bring interesting books in. very soon, i was escorted back to the doctor area.
the nurse asked if i was all right. i told her i was ok, but nervous. she didn't blame me. she took my weight, and lead me into the examining room.
she checked my blood pressure, and told me i had great numbers. she was trying to bolster me up a bit... it helped. then, she went down the list of my prescriptions, to whittle them down to things i was taking at the moment. i told her i was just taking vitamins, zyrtec, and an occasional big ass ibuprofen. (i love the big ass ibuprofen. they last a whole day, and really help with the pain i have.)
soon, my dear oncologist came in. she had an observing doctor with her... someone who wanted to see if she wanted to be in the cancer field. i didn't mind. lady was lucky to have the best teacher leading her around.
she asked how i was. i told her about how the radiologist was concerned about my right arm. she asked if they had set up an appointment for a scan. i said no, but showed both arms to her. she didn't see any difference, and didn't act concerned about it.
(i almost don't want to go back to the radiologist. i really feel her job is done. i have plenty of time to cancel my appointment. i really have to think on this.....)
she checked my spleen...liver... ankles.... lymph nodes in the neck, and underarm. her touch was strong, and assured. i was sure that nothing would get past her exam.
she made things right.
i talked to the new doctor, telling her that it was hard coming into the cancer place sometimes. she said that it was probably the building. i said yes, as well as the smells, and the sounds. they both nodded their heads vigorously. it felt good to be understood.
this time, my oncologist made sure to say that what i was feeling was normal... after all, i had something that was very much like post traumatic stress disorder.
when i had my first cesarean, i was told i had had a major operation. i pooh poohed it, and tried to walk around like i owned the place. i paid for it later with severe postpartum depression. i try my best to belittle the traumas i've felt in life.... never to deal with them until it's too late.
hopefully by writing, and talking, reading and listening i can learn to live again.
i. just. don't. know.
in the midst of our talking, i told my oncologist that i didn't even know if i was in remission. she said that, to her, i was indeed in remission. she wanted to give me another pet scan in three months, to be sure.
i haven't been sleeping well lately. i haven't been eating right, either. i'm going into the free clinic i have with my insurance wednesday, to make sure my eyes are not infected. (i wake up in the morning, and my eyes are fused shut. yeah, i know. ew. could it be allergies? intense dry eye? infection? we will see.)
also, i've paid all but one bill having to due with the recent cycle of things (pet scan/lymph node removal). it's great to have my work help me, with their medical compensation. it makes it that much easier to face the future, with the various "are you ok?" pet scans to follow.
the less to worry about, the better, i say......
and so it goes.
Thursday, April 16, 2015
radiation follow up
well, i thought this was going to be the last radiology visit.....
i went in, right on time. walked past the receptionist station (the lady who used to be there is now a large young man with orange hair.) i was asked to sign...something. (permission for treatment, i think.)
then i waited.
there were new pamphlets at the patient table. what to eat during cancer treatment. what your prostate cancer means to you. a cancer hat catalog. in the background, i heard the news of the day. (mostly about the traffic situation.... you can't swing a cat without hitting it against a traffic cone.)
soon, i was called back. this nurse was different than the other one i encountered. she didn't react at all to my weight. she asked if i had any scans recently. i told her about the pet, but she nodded in a way that said "oh, i know about that one. i meant any other ones....." so my explanation trailed off, and i shrugged. she understood.
(is it any wonder writers have trouble writing dialogue? we have so many shorthand ways of talking....)
soon, the radiologist burst in. she was glad to see me healthy, and thriving. she liked my blouse, and the thin fabric was perfect for spring. was that a natural curl in my hair? wow.....
after the inspection, she asked how i was. i had no troubles to report. she said she had never seen anything like what i had experience before... she believed everything happened for a reason, so even though the lymph nodes didn't have an irregularities, it was good to remove them just in case there was one small cancer cell in there....
she then called me over to the examination table to look at me. (i had purposely decided to sit on one of the observation chairs, as if to say "i'm not sick. i don't necessarily need to sit in the sick chair.")
as i went to sit down, i heard a small knock on the door. she didn't. i told her, and she praised me for having better ears than she did.
she was soon excusing herself, and running down the hall.
i sat, and looked around. small room. scale. dim lights. beige. very seventies looking. the smell of alcohol. the sound of a dull air conditioner.
sometimes life is a refresher course in memories you never wanted to remember.
the radiologist burst back in. she said that she knew the patient would have trouble keeping her hands over her head... and was trying to make the treatment shorter for her.... in an undertone i said "it's a hard position to maintain, sometimes." and she said "yes... you would know about that"
she raised my arm, and said that it looked good. she then pulled both my arms forward, and compared them.
she didn't like what she saw.
she said she wanted to keep an eyeball on my arm.... wanted to see me in six months. asked me when i was to see the oncologist (next week.) told me to tell her that my arm concerned her, to keep her in the loop.
and... she was gone.
sigh.
so, i walked out of the exam room, with my sheet of paper. handed it to the new girl at the receptionist desk. (the one who made long pauses in her phone message to me....telling.....me.....when my next......appointment was.)
"ah, we get to see you back again in six months."
she scanned my face.
"are you not happy about that?"
"well.... it's different." (resigned, soft voice.)
"ah. different."
and soon i was out the door.
i'm not too worried about things. i can't do much about it, anyway. i just... wish i didn't remember things so vividly when i walked in rooms of the past. it's as if i opened the door, and things came falling out, like fibber mcgee's closet.
one day i need to learn to live with the clutter, and not keep stuffing things away.
soon.
right now, tupperware is a comfort.
sigh
i went in, right on time. walked past the receptionist station (the lady who used to be there is now a large young man with orange hair.) i was asked to sign...something. (permission for treatment, i think.)
then i waited.
there were new pamphlets at the patient table. what to eat during cancer treatment. what your prostate cancer means to you. a cancer hat catalog. in the background, i heard the news of the day. (mostly about the traffic situation.... you can't swing a cat without hitting it against a traffic cone.)
soon, i was called back. this nurse was different than the other one i encountered. she didn't react at all to my weight. she asked if i had any scans recently. i told her about the pet, but she nodded in a way that said "oh, i know about that one. i meant any other ones....." so my explanation trailed off, and i shrugged. she understood.
(is it any wonder writers have trouble writing dialogue? we have so many shorthand ways of talking....)
soon, the radiologist burst in. she was glad to see me healthy, and thriving. she liked my blouse, and the thin fabric was perfect for spring. was that a natural curl in my hair? wow.....
after the inspection, she asked how i was. i had no troubles to report. she said she had never seen anything like what i had experience before... she believed everything happened for a reason, so even though the lymph nodes didn't have an irregularities, it was good to remove them just in case there was one small cancer cell in there....
she then called me over to the examination table to look at me. (i had purposely decided to sit on one of the observation chairs, as if to say "i'm not sick. i don't necessarily need to sit in the sick chair.")
as i went to sit down, i heard a small knock on the door. she didn't. i told her, and she praised me for having better ears than she did.
she was soon excusing herself, and running down the hall.
i sat, and looked around. small room. scale. dim lights. beige. very seventies looking. the smell of alcohol. the sound of a dull air conditioner.
sometimes life is a refresher course in memories you never wanted to remember.
the radiologist burst back in. she said that she knew the patient would have trouble keeping her hands over her head... and was trying to make the treatment shorter for her.... in an undertone i said "it's a hard position to maintain, sometimes." and she said "yes... you would know about that"
she raised my arm, and said that it looked good. she then pulled both my arms forward, and compared them.
she didn't like what she saw.
she said she wanted to keep an eyeball on my arm.... wanted to see me in six months. asked me when i was to see the oncologist (next week.) told me to tell her that my arm concerned her, to keep her in the loop.
and... she was gone.
sigh.
so, i walked out of the exam room, with my sheet of paper. handed it to the new girl at the receptionist desk. (the one who made long pauses in her phone message to me....telling.....me.....when my next......appointment was.)
"ah, we get to see you back again in six months."
she scanned my face.
"are you not happy about that?"
"well.... it's different." (resigned, soft voice.)
"ah. different."
and soon i was out the door.
i'm not too worried about things. i can't do much about it, anyway. i just... wish i didn't remember things so vividly when i walked in rooms of the past. it's as if i opened the door, and things came falling out, like fibber mcgee's closet.
one day i need to learn to live with the clutter, and not keep stuffing things away.
soon.
right now, tupperware is a comfort.
sigh
Monday, April 6, 2015
one year
this is my one hundredth post.
a year ago to-day, i was starting chemotherapy. as i remember, i had a sandwich, ginger ale, cheese, doritos, and a banana nearby. i was on my laptop, trying hard to remember what drugs were being put in me.
my whole world was tense.
now, little by little...bit by bit... i'm getting stronger every day. i'm finding more energy to chase after patrons. i'm finding more pep to write poems (some that even rhyme)
i'm finding myself in all of this mess
i'm not a 100%, though. i still get overwhelmed in crowds. (the world just got bigger, and i feel smaller.) i still don't go to family reunions (i'm afraid of being in the middle of the land of allergies.)
sometimes, i let the insecurities take over....
not too long ago, i completed my session with the surgeon. he put his finger into my armpit, and wiggled. he said that my scar had healed good, and it looked like there were no complications. he then said "thank you" and hauled ass out of the room.
i called him back for questions. further inspection. reassurances. i got the answers to my questions in two word answers, and no reassurances.
i should be used to that by now, right?
anyway, i was relieved to be rid of the man, and i'm sure he felt the same way about me. when you are someone who really needs comforting, who is a bit of a basket case, it's hard to find someone who's patient with you in the way that you need. i was really spoiled by the oncologist.
i need to be realistic with the rest of the world.
i went to the dermatologist recently. remember when my new year's resolution was to get the lump under my arm looked at, and get my skin cleared? well, this time it was my skin's turn to be taken care of. my arms are looking a lot better, but i'm still having trouble with an irritation that i've had forever.... i may have to go back in to resolve it. no worries. it's something that dove soap, aveeno oil, vitamins, and a little special medicine will clear right out.....
so... like target, it's all on the up and up.
i will still write here. i have a radiologist appointment soon... also a return visit with my ever loving oncologist. there will be more scans.... and more anxieties. more hopes, and more dreams.
bring them on
even though i'm technically in remission, i don't feel cured. i don't feel sick, either. i just feel a little better....day by day.
hope is here...... i'm so thankful it's back.....
a year ago to-day, i was starting chemotherapy. as i remember, i had a sandwich, ginger ale, cheese, doritos, and a banana nearby. i was on my laptop, trying hard to remember what drugs were being put in me.
my whole world was tense.
now, little by little...bit by bit... i'm getting stronger every day. i'm finding more energy to chase after patrons. i'm finding more pep to write poems (some that even rhyme)
i'm finding myself in all of this mess
i'm not a 100%, though. i still get overwhelmed in crowds. (the world just got bigger, and i feel smaller.) i still don't go to family reunions (i'm afraid of being in the middle of the land of allergies.)
sometimes, i let the insecurities take over....
not too long ago, i completed my session with the surgeon. he put his finger into my armpit, and wiggled. he said that my scar had healed good, and it looked like there were no complications. he then said "thank you" and hauled ass out of the room.
i called him back for questions. further inspection. reassurances. i got the answers to my questions in two word answers, and no reassurances.
i should be used to that by now, right?
anyway, i was relieved to be rid of the man, and i'm sure he felt the same way about me. when you are someone who really needs comforting, who is a bit of a basket case, it's hard to find someone who's patient with you in the way that you need. i was really spoiled by the oncologist.
i need to be realistic with the rest of the world.
i went to the dermatologist recently. remember when my new year's resolution was to get the lump under my arm looked at, and get my skin cleared? well, this time it was my skin's turn to be taken care of. my arms are looking a lot better, but i'm still having trouble with an irritation that i've had forever.... i may have to go back in to resolve it. no worries. it's something that dove soap, aveeno oil, vitamins, and a little special medicine will clear right out.....
so... like target, it's all on the up and up.
i will still write here. i have a radiologist appointment soon... also a return visit with my ever loving oncologist. there will be more scans.... and more anxieties. more hopes, and more dreams.
bring them on
even though i'm technically in remission, i don't feel cured. i don't feel sick, either. i just feel a little better....day by day.
hope is here...... i'm so thankful it's back.....
Saturday, February 21, 2015
sit rep
to-day it was incredibly busy at work. i helped so many people, and it was beautiful....
i felt very useful.
i'm still tired from the procedure. my right arm is tingly sometimes. i have to stretch it with my other hand across my body sometimes, to get it to stop. i'm just going to have to look up exercises myself, to strengthen that arm.
i'm just going to have to move around more.
lately, i've been cocooning in my room a lot. partially because it's so cold.... and partially because of my achy arm. also, i'm getting the cold everyone else is getting. no, i'm not. yes, i am. (trying to psyche myself out of it.)
i don't feel as depressed as i was before. yes, i still have low times. also, i feel like i'm about to have my period, but i never do, which leaves me hanging in a bad way.
wtf, body?
i almost want to do something special this st patrick's day..... (it was march 17 of last year that the chemo started.) i don't know what. it's on a tuesday, which is usually bagel day. maybe i'll go out for breakfast instead.
there are days i can't believe what's happened to me. then there are days i feel every ache and pain. sometimes, someone will come in with musky perfume that will make me think of the smell of the chemo drugs.
i should revisit the chemo area.....and take a picture. i was here.
i never want to stop learning, growing, helping, believing.....
hoping
i felt very useful.
i'm still tired from the procedure. my right arm is tingly sometimes. i have to stretch it with my other hand across my body sometimes, to get it to stop. i'm just going to have to look up exercises myself, to strengthen that arm.
i'm just going to have to move around more.
lately, i've been cocooning in my room a lot. partially because it's so cold.... and partially because of my achy arm. also, i'm getting the cold everyone else is getting. no, i'm not. yes, i am. (trying to psyche myself out of it.)
i don't feel as depressed as i was before. yes, i still have low times. also, i feel like i'm about to have my period, but i never do, which leaves me hanging in a bad way.
wtf, body?
i almost want to do something special this st patrick's day..... (it was march 17 of last year that the chemo started.) i don't know what. it's on a tuesday, which is usually bagel day. maybe i'll go out for breakfast instead.
there are days i can't believe what's happened to me. then there are days i feel every ache and pain. sometimes, someone will come in with musky perfume that will make me think of the smell of the chemo drugs.
i should revisit the chemo area.....and take a picture. i was here.
i never want to stop learning, growing, helping, believing.....
hoping
Monday, February 2, 2015
pulling out hoses
so, i went in to get the drain taken out to-day.
i came out of work....and pampered myself. i ate the rest of my sandwich. i drank water. i took tylenol, and the afternoon vitamins. i went to the salvation army, and looked through their store. (i ended up getting two comfortable pairs of shoes for work. much needed. oh, and an overnight bag. not so much needed :) )
then i leisurely drove to the surgeon's office.
i was early, so i dawdled a little bit in the parking lot. i walked in, and immediately stepped into a full elevator. three blonde family members, a frail man with a cane, and a "Lord Jesus" woman were inside. "don't worry, you are standing next to an anointed angel and daughter of God, you'll get better.... and you'll be healed" she said to the frail man. he got out at the second floor, saying "if it only were that easy."
she got out at the third floor, singing and humming to herself.
interesting.
i got out at the fourth floor, and went to the restroom. i wanted to drain the pump for the last time, and take care of myself. i pulled up my shirt, and looked at the pump.
the hose had separated from the bulb. wonderful.
i took off my coat, and outer shirt. luckily, i hadn't leaked much. (much.) i reassembled the contraption, and stuck it back inside my clothing. afterwards, i washed my hands, and used the excess water to try to plaster down my crew cut before leaving the restroom.
sigh.
i went to the waiting room, and signed in. i sat in the same comfy couch that my daughter and i had been in before, and pulled out two books to read.
where was my daughter? well..... last night, i asked "you remember that you're going with me to the doctor's to-morrow, right?" she gave me a look that would kill a man in three steps. i immediately said "that's all right... it's an embarrassing visit (which it was) you don't have to go." and she silently stormed out.
she asked, three hours later, when i was coming back to pick her up so she could be ready. i told her really, she didn't need to do so. later she texted me, and said i could use her car. i did not.
i don't mind that she gets fiery like this. hell, i did the same thing when i was young, and out of control. i try very hard to not feel hurt.... but i'm tearing up at explaining this. i could have given up, and let her go with me.. but, to tell you true, i was so hurt by the action that i didn't want any bad blood to continue between us.
it may not be the right answer.... but it felt like the right thing to do.
i read a doonesbury book on war rehabilitation. it was a quick read, and reminded me of the times when i would buy the single chapters of trudeau's books, like when b.d. and phred became friends. (i should revisit the whole series again. i really liked it.)
it seemed like everyone there was either dizzy, walking very slowly, or falling asleep on the couch. it troubled me that i was one of those people. i should have taken time off for this procedure, and would have if i was guided to. (instead, when i asked when i should go back to work, i got told "whenever you want.")
my appointment was at three o'clock. i ended up being called in at 3:15. (no big deal.)
to-day was the first day i had to tell a nurse that she would have to take my blood pressure on my left side. (i mourn that a little now.... man, i'm a teary mess right now. gah!) the instrument read a little higher than usual because she was taking it through layers of clothing, and she had my arm in a weird position, but it still was excellent, so it wasn't a problem.
then i was taken to an examination room. i was asked why i was here to-day. i told her about the drain, and she looked at my file, shaking her head. then she read enough to say "oh!" and left the room.
she came back, and put a pillow on the examination table. she asked me to put on the pink paper gown with the opening in the front, and then cover myself with the paper blanket.
she then went to the trouble of pulling down the shades to the window. "even though i know there's a film on the window, it sure looks like they can see in here." i giggled, and nodded. nice lady.
i put on the gown, held the paper blanket in front of me, and looked in the mirror. i had enough time to have a selfie session (as we do when we think we look good in pink) before the doctor came in.
"so, they did not find any lymphoma."
"yes. isn't it great?"
"well, it's unusual."
deadpan.
there was a diagram of a breast on the wall. i asked him to show me what he took out.... it looks like he just took out some of the top of the underarm. he said that there were many swollen nodes... he just took out the hard ones. i didn't ask how many that was, but it seemed great that he left some.
i guess.
i went to lie down on the table. he gently prevented me from doing so.
he looked at page one of my drain table. (i was supposed to record every day how much liquid i took out of my drain.)
"looks like we won't be take out the drain to-day."
he was looking at page one, where the measurements were at 20 ml a day.
"there are two pages."i said gently.
he turned to the second page, where the liquid measurements went down to 5 ml a day.
"looks like we will be taking out the drain to-day." he said, without any humour or emphasis.
yeah.
i went to lie down again, and he gently stopped me. he said to come in if i felt swollen, and they would go in and draw out more liquid. then he said he wanted to see me again in a month.
and with that he exited.
thanks?
the nurse walked towards me. then she stepped back, and said she needed to talk to the doctor. then she left, and another nurse came in.
i was beginning to feel very unpopular. no worries. nurse number three was cool.
she started to take off my bandage, and i jumped. she apologized warmly, and with my "it's ok" i explained that my dry skin liked to hang on to bandages. she totally understood.
as she undid my sutures, i said that i had watched how they did this on youtube, and the reactions were either "Lord, Jesus, take a pill before you go in!" or "that wuddn't too bad."
she laughed, and made ready to take out the tube.
"ready?"
yes.
at first, it seemed like i was unraveling. i panicked a bit, but started to feel better the more she pulled. i couldn't even feel the last few inches. (there was about 14 inches of tubing inside the underside of my arm, contouring my right breast.)
she took out the entire tube as i held up my underarm. i hadn't laid down on the table at all.... not even using the pillow laid out for me. (good thing, too. because of the sutures, it was hard for me to pull myself up with my right arm. i would have been turtle-bound to the table.)
i found the doctor as i walked in the hall. i asked, and he told me that the incision's stitches would dissolve on their own. (it's actually a good incision... i didn't even feel like it would bust open once.)
i have been told i could shower, or whatever i wanted.... there was going to be a hole there for a bit, but it would scab over soon. i bought some antibacterial waterproof bandages to cover the wound.....
and now i wait a month to see the surgeon. i wait until april to see the radiologist, and the oncologist.
i wait for my life to begin soon, too. first, i need to heal. and rest. and cry. and mourn. and crawl into a ball, and say "why me?"
but i can't say "i want to die" anymore. i went through mammogram, and biopsy, bone marrow biopsy and ct scan, pet scan and chemo, radiation and lymph node removal. almost every deep procedure known to man. (that i know of.) a person going down this path logically does not have the reason to say "i want to die" anymore.......
no matter how much she cries.....
it's time to take back my life, and survive.
survive, and hope.... and perhaps dream again.
maybe.
i came out of work....and pampered myself. i ate the rest of my sandwich. i drank water. i took tylenol, and the afternoon vitamins. i went to the salvation army, and looked through their store. (i ended up getting two comfortable pairs of shoes for work. much needed. oh, and an overnight bag. not so much needed :) )
then i leisurely drove to the surgeon's office.
i was early, so i dawdled a little bit in the parking lot. i walked in, and immediately stepped into a full elevator. three blonde family members, a frail man with a cane, and a "Lord Jesus" woman were inside. "don't worry, you are standing next to an anointed angel and daughter of God, you'll get better.... and you'll be healed" she said to the frail man. he got out at the second floor, saying "if it only were that easy."
she got out at the third floor, singing and humming to herself.
interesting.
i got out at the fourth floor, and went to the restroom. i wanted to drain the pump for the last time, and take care of myself. i pulled up my shirt, and looked at the pump.
the hose had separated from the bulb. wonderful.
i took off my coat, and outer shirt. luckily, i hadn't leaked much. (much.) i reassembled the contraption, and stuck it back inside my clothing. afterwards, i washed my hands, and used the excess water to try to plaster down my crew cut before leaving the restroom.
sigh.
i went to the waiting room, and signed in. i sat in the same comfy couch that my daughter and i had been in before, and pulled out two books to read.
where was my daughter? well..... last night, i asked "you remember that you're going with me to the doctor's to-morrow, right?" she gave me a look that would kill a man in three steps. i immediately said "that's all right... it's an embarrassing visit (which it was) you don't have to go." and she silently stormed out.
she asked, three hours later, when i was coming back to pick her up so she could be ready. i told her really, she didn't need to do so. later she texted me, and said i could use her car. i did not.
i don't mind that she gets fiery like this. hell, i did the same thing when i was young, and out of control. i try very hard to not feel hurt.... but i'm tearing up at explaining this. i could have given up, and let her go with me.. but, to tell you true, i was so hurt by the action that i didn't want any bad blood to continue between us.
it may not be the right answer.... but it felt like the right thing to do.
i read a doonesbury book on war rehabilitation. it was a quick read, and reminded me of the times when i would buy the single chapters of trudeau's books, like when b.d. and phred became friends. (i should revisit the whole series again. i really liked it.)
it seemed like everyone there was either dizzy, walking very slowly, or falling asleep on the couch. it troubled me that i was one of those people. i should have taken time off for this procedure, and would have if i was guided to. (instead, when i asked when i should go back to work, i got told "whenever you want.")
my appointment was at three o'clock. i ended up being called in at 3:15. (no big deal.)
to-day was the first day i had to tell a nurse that she would have to take my blood pressure on my left side. (i mourn that a little now.... man, i'm a teary mess right now. gah!) the instrument read a little higher than usual because she was taking it through layers of clothing, and she had my arm in a weird position, but it still was excellent, so it wasn't a problem.
then i was taken to an examination room. i was asked why i was here to-day. i told her about the drain, and she looked at my file, shaking her head. then she read enough to say "oh!" and left the room.
she came back, and put a pillow on the examination table. she asked me to put on the pink paper gown with the opening in the front, and then cover myself with the paper blanket.
she then went to the trouble of pulling down the shades to the window. "even though i know there's a film on the window, it sure looks like they can see in here." i giggled, and nodded. nice lady.
i put on the gown, held the paper blanket in front of me, and looked in the mirror. i had enough time to have a selfie session (as we do when we think we look good in pink) before the doctor came in.
"so, they did not find any lymphoma."
"yes. isn't it great?"
"well, it's unusual."
deadpan.
there was a diagram of a breast on the wall. i asked him to show me what he took out.... it looks like he just took out some of the top of the underarm. he said that there were many swollen nodes... he just took out the hard ones. i didn't ask how many that was, but it seemed great that he left some.
i guess.
i went to lie down on the table. he gently prevented me from doing so.
he looked at page one of my drain table. (i was supposed to record every day how much liquid i took out of my drain.)
"looks like we won't be take out the drain to-day."
he was looking at page one, where the measurements were at 20 ml a day.
"there are two pages."i said gently.
he turned to the second page, where the liquid measurements went down to 5 ml a day.
"looks like we will be taking out the drain to-day." he said, without any humour or emphasis.
yeah.
i went to lie down again, and he gently stopped me. he said to come in if i felt swollen, and they would go in and draw out more liquid. then he said he wanted to see me again in a month.
and with that he exited.
thanks?
the nurse walked towards me. then she stepped back, and said she needed to talk to the doctor. then she left, and another nurse came in.
i was beginning to feel very unpopular. no worries. nurse number three was cool.
she started to take off my bandage, and i jumped. she apologized warmly, and with my "it's ok" i explained that my dry skin liked to hang on to bandages. she totally understood.
as she undid my sutures, i said that i had watched how they did this on youtube, and the reactions were either "Lord, Jesus, take a pill before you go in!" or "that wuddn't too bad."
she laughed, and made ready to take out the tube.
"ready?"
yes.
at first, it seemed like i was unraveling. i panicked a bit, but started to feel better the more she pulled. i couldn't even feel the last few inches. (there was about 14 inches of tubing inside the underside of my arm, contouring my right breast.)
she took out the entire tube as i held up my underarm. i hadn't laid down on the table at all.... not even using the pillow laid out for me. (good thing, too. because of the sutures, it was hard for me to pull myself up with my right arm. i would have been turtle-bound to the table.)
i found the doctor as i walked in the hall. i asked, and he told me that the incision's stitches would dissolve on their own. (it's actually a good incision... i didn't even feel like it would bust open once.)
i have been told i could shower, or whatever i wanted.... there was going to be a hole there for a bit, but it would scab over soon. i bought some antibacterial waterproof bandages to cover the wound.....
and now i wait a month to see the surgeon. i wait until april to see the radiologist, and the oncologist.
i wait for my life to begin soon, too. first, i need to heal. and rest. and cry. and mourn. and crawl into a ball, and say "why me?"
but i can't say "i want to die" anymore. i went through mammogram, and biopsy, bone marrow biopsy and ct scan, pet scan and chemo, radiation and lymph node removal. almost every deep procedure known to man. (that i know of.) a person going down this path logically does not have the reason to say "i want to die" anymore.......
no matter how much she cries.....
it's time to take back my life, and survive.
survive, and hope.... and perhaps dream again.
maybe.
Saturday, January 31, 2015
coming to terms
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......
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......
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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