radiation anxiety

i'm at work.  i'm trying not to cry.  writing will help, right?

i finally got a date for my radiation.  they wanted me to come in the tuesday after labor day, but it was at a time that wasn't feasible.  so, instead, i'm going in two weeks from now, on a tuesday, at 7:45 am.

i'm scared, and tired of being a good sport.

i'll be going in with a strong male person, who will more than likely take the radiologist's side, and tell me "well, she's that bad at all!"  and look at me like i'm stupid.

all i can do is rest up, eat as healthy as possible, and drink a lot of water.

this holiday, i wanted to go to this mountain i know of in my area.... walk, and look around high up..... and lean on nature for a-while.  someone is making it slightly difficult to do this.  i may take a couple of smelly boys, and go by myself.

have an adventure.

they won't mind when i have to stop every now and then.  they won't care if i'm discouraged, and weepy.  they'll be happy with water bottles, hostess ding dongs, and happy meals from mcdonalds.

maybe i'll find a little peace.... take a few pictures, and relax.....

it could happen.

i wish i were grown up.

frustrations

on the 13 of august i had a pre-scan.

a week later, on the 20th, i had another, because the technician messed up.

now, a week later, i still haven't started radiation therapy.

i'm waiting on the doctor, i'm told.   a doctor i don't like, trust, or respect at this point.

a doctor who said she is used to taking patients straight from chemo to radiation because of the importance of fighting the cancer.

the next time i see the doctor, i have to act like i care about what she's saying.

actually, i have to care, because it's about my life.... even if i have a shitty attitude towards a woman who asks, but doesn't even listen to a thing i say.

because i'm just this thing that needs to obey, and sit silently while she picks at me.

this is what i've become.

fuck it.

the eyes have it (omg, these titles are getting so corny)

i don't know if i told you, but my eyes have been going nuts since my fifth chemo.  they were red, and goopy, and i would wake up with my eyelids stuck to-gether.  yeah, a hot mess.

when i told my oncologist about it, she said she wasn't knowledgeable enough about eyes, and that i should see a specialist, but that it would probably take a long time, since specialists had long waiting lists.  (i know of this because i always have to wait on my dermatologist.)

so, i let it go, thinking that i would get better soon.

didn't.

the radiologist, during our visit, thought i was crying when she saw me in the early morning.  no.  that's when my eyes are at their worst.... red, and teary with thick tears that didn't quite feel like water.  she said i should one day go to a specialist.  until then, zyrtec helps.  ok.

finally, i called my oncologist's nurse, who was able to get me in to see a specialist ....two days later!  these ladies have some pull.... i was very grateful....

you know, i love google maps, because they show you exactly where a place is, and how to get there,  unfortunately, if the place is in a building, it doesn't let you know to look for one.  so...  i was ten minutes late to my appointment.  no one seemed to mind, though, which was nice.

i was filling out the new patient form when i was called into the patient room by the nurse.  as she was asking me questions, i was getting her to help me with the form, which was awesome because sometimes new patient questions can be read three different ways.  i was miss happy mouth, cracking jokes, and giggling with her over things.... i haven't been that way in a-while.  it was good to be real with someone again.

the nurse checked my vision.  "read the smallest line" turned out ok for me.... i read the next to the last line, rather than the big ass line at the very top.  she gave me the eye spoon, and she checked each eye.  i sort of passed, i think.  my eyes don't work well by themselves, but they work great in stereo.  i must have dolby vision.

then, i waited for the eye doctor.  for a bit.  enough time passed that i was able to call, and talk to a couple of people.  i must have been a "can you wedge her in somewhere?" patient.  hell, i was glad i was able to be wedged in.

the doctor came in, and looked at my file.  as he looked, he asked me questions.  i could tell he read the file, because he added my words to his while he explained about my condition.  he multi-tasked very well.  thank goodness.

he put some drops in my eye to colour it, so he could look at it closely.  almost immediately, he let me know that what he was thinking was actually happening to me.

dry eye syndrome.

now, how can eyes so teary be dry?  well, there are three types of tears in your eye.  oily, watery, and mucus-y.  the chemo drugs made my system go off-balance, and i wasn't getting the watery tears i needed.  the zyrtec, which helped my poor nose, wasn't doing wonders for my eyes, either.

i needed special over the counter eye drops.  luckily, the eye doctor had abundant samples of the stuff.  i was to do the drops four times a day, even if i didn't feel like i needed them.  i was to aim the drops at the bottom of my eye, and let it wash upwards.

then, i'm supposed to come back in a month to see if things are better.

i was beyond grateful to get the diagnosis.

in fact, when the doctor was looking through the machine into my eyes.... as he was telling me about the dry eyes.... i started to tear up.  i said "thank you.  this really helps."

i cry so easily these days.  to my detriment, sometimes.

as the doctor wrote out the summary of our visit, he said.....

"you're not crazy."

because he knew that cancer patients usually think they are.

because he probably knew that cancer patients almost have to fight for their own lives with doctors.... that they have to become their own advocates just to survive.

because he cared.  and that helped a hell of a lot to hear.

when i went to the billing station, i told the admin something like "he sure did right by me."

"he sure did right by me."  saying it almost country, like my daddy.

grateful for a visit that helped, as well as counseled.

sometimes, the most mundane remarks can go deep into the soul, and help more than anyone knows.

i'm not crazy.

well, not this week, anyway.  

:)

first week back at work

how was work?   hard.  still is.  i work four hour shifts  (i'm part time) but it's still intense, because it's a very busy library.

co-workers help.  they don't remark about how different i look... or how horrible i do my job.  they just answer my dumb questions, and allow me to do my thing.  (thank goodness.)

it's very odd.  i can remember the complex things  (like how to cancel a hold, reactivate it, and change the location on it)  but i can't remember the simple things.  (where the hell are the large print books?  um... they're the same place they've been for the past six years, lady!)

i come home, and i'm wiped physically.  so much so that i take a nap before supper.  i need to stop that.... because i'm not getting to sleep on time.  also, i wake in the night, wondering why i have to sleep when i just woke up from a nap.  very confusing.

there is one "helpful" coworker who thinks it's her business to tell me to slow down, and not do so much....almost every time i talk to her.  i was sort of prepared for this lady, because she was like this before.... always making up drama between her and....just about everyone.  still, it's hard to take when i'm trying my best to do my best, while fighting the fatigue i know will only get worse when my radiation starts.

oh, yeah.... radiation.

um... the radiation tech called, and said they didn't get all of me scanned properly.... and that i would have to come in again to get re-scanned.  this wednesday.  so, that pushes radiation another week behind.

sigh.

still, maybe this is a good thing.  i'll have better habits by then.   i'll be used to work.  i'll be drinking more water, and be a bit more calmer.  so....

still, i wish it were over.

good things:  i have somewhat cool glasses to wear at work.  i have more and more stubble growing on my bare head.  my eyes are good... as long as i take zyrtec.

i'm not as sad.... as long as i don't think too hard.

it's getting better.  i just wish i were stronger.

soon, right?

day by day....

radiation initiation

.....actually called "radiation simulation"  but you know how i play with words.....

so i went in, dim and early at 7:50 am.  i waited in the waiting room... ended up i was in the wrong area.  (the radiation waiting room was further inside.)  luckily, i didn't wait too long.  i was instructed to come in, strip from the waist up, and put on a hospital gown.  (i'll do that every time i come into the radiation area... they even had a locker, with lock and key, to put my personal things inside of.)

they took me to a room that had a ct scanner.  i laid myself down on the skinny board, and put my hands up near my head.  there were two handles to hold onto, and a padded area where my head and arms were supposed to go.  as soon as i got in a comfortable position, the technician molded the paddings around me.... they would soon harden to help me remember the exact position i needed to be in for the radiation to work.

i was then slid in and out of the doughnut scanner, to see if i would fit through the machine with ease.  then, i was marked on either side of me, and in the right breast, with a marker.  then the technician went to go get the radiologist, to make sure he made the markings correctly.

the radiologist came in, and immediately gave me a too-bright smile.  she was all in "try to cheer her up" mode even before i had shown any sadness.  (i was mostly neutral throughout our interaction.)  she checked the markings, and deemed them correct.  she then took stickers with wires connecting them and surrounded the place where my tumour was with these special stickers.

then she was gone.

the technician used ink, and just a pinpoint of pain in three spots, highlighting more permanently the markings he had made.  he covered them with something he called bbs...stickers with little raised dots on them.  he said the ct scan would see the markings better with them.

i dressed myself carefully, and then he took me to the outpatient imaging area.

the hospital i go to is older..... and he knew a way to get to where we were going using a tunnel underneath the complex.  the halls were worn, and dead mall looking...... i was loving it, and wished i had a chance to take pictures.  (i should have. )

as we walked, i woke up more, and opened up to him.  he was one of three people i would see daily in my road to get well, and he seemed like a nice fellow.  plus, he was the cousin of someone i respected at work.... i was happy to tell him that his cousin was fair, and just, and really an all around nice person.  he said he had never gotten to get to-gether with her since moving back to town.... it's amazing the people we're related to who we never find time for.  i would love to have a relative in town.....

we went to the ct scan room, and i changed into a gown again.  when i was done, i walked into the ct scan room.  the technician was in deep discussion with the nurse helper, and didn't quite see me.  i didn't mind.  they seemed to really enjoy talking, and i didn't need to be anywhere.  finally, i was noticed, and there were apologies all around.  i said it was all right, but that i really should go to the restroom first.  the nurse giggled, and said that i must have had a ct scan before.  oh yeah!  :)

so, i came back from the restroom, and was carefully laid out on the machine exactly like i was in the other room.  my hands were up, holding the bars.  my head was straight, and in the middle of the padding.  my legs were up, and there was a padded wedge under my knees for comfort.

the nurse asked which arm i wanted the i.v. in.  i said i had no preference, but cautioned her that i had some scar tissue, and that she may need to stick me on the outside edges of my arm.  she did good needlework, and there wasn't hardly any pain.

at first, they slid me in and out of the scanner..... i'm not quite sure why.  then, the nurse warned me before the dye was about to go through.  there was no denying it.... the warmth went up and down my body, and i got that "you know, a bathroom would be nice about now" feeling.

and soon, things were done.

the technician and the nurse took off the wire stickers, and the bbs.  i have clear stickers where the tattoos are.... they are supposed to stay there until i next go into the radiation room.  i put my clothes on, and was soon somewhere in the land of orange juice, and sausage biscuits.

now, i wait until i'm scheduled for the radiation therapy.  still sounds like it's five weeks long, but even the technician said that she will check, and maybe i didn't have to do the five weeks.

i know better than to hope.

i'll write about my first week at work friday night, when i have a bit more energy.  i'm trying hard to pace myself, but i'm noticing that people think i'm "better" and are acting normal around me.... well, as normal as you can be around someone with drawn on eyebrows.  

what's normal, anymore?  

sit rep

my radiation simulation is set for early wednesday morning.  (hopefully to be done in an hour...way before i need to go to work.)

i'm reading up on things.  it's sad to see so many informative hospital websites, with complete directions.... especially when all the instruction i got was "don't eat four hours before" and "we'll see you soon."

this is a good source for what i'm about to go through, and what will happen later:  http://www.mskcc.org/cancer-care/patient-education/resources/radiation-therapy-head-and-neck

reading ahead makes me not scared of what's ahead.  hopefully, everything will be taken care of, and i won't have all the wild side effects others have had.

here's hoping....

radiation initiation

a new doctor has come to help.  the radiologist.  she's...interesting.

at first she said that the treatment would take four weeks.  (my oncologist said it would be three.)  then she went through all my records and files in front of me, as if she had never seen them before.  (i'm sure that's standard procedure now, but i always think that it's good to anticipate things, and look over stuff before you see someone....but i guess no one has time to do that anymore.)

then she said that it may take five weeks.

i'm going to be doing consolidation radiation therapy.  it's like the closing pitcher coming in at the end of the baseball game, to sweep away any enemies, and make sure i can win the game.  i have an 80% chance of getting rid of this cancer.  but, in a later part of the conversation, the radiologist said she had never seen anyone leave with cancer in their body.  so she's set the bar high....

i just wish she'd listen to me.

so, here's how it goes...

monday (or perhaps friday) i'm going in for a simulation.  a ct scan will be done, to figure out how to aim the instruments that will give me the radiation.  also, i will be tattooed with small dots to help with placement.  

a week after that i go in, monday thru friday, at 8:00am, and get a treatment, allegedly in 10-15 minutes.  (i'm a bit skeptical here, because it took more than an hour to see the radiologist to-day.)

the radiologist was very thorough.  she checked under my arm, and compared it to the other side, saying that she did feel the lumps underneath.  she showed me the first pet scan, where the big mass looked like a small kidney under my arm.  the latest pet shows three small dots.... so it's breaking up, rather than staying a big piece.

she says that the only risk she's worried about (and she said she would be diligent on checking on this) is with lymphendema.  (a blockage of the lymph nodes).  she talked a tiny bit about breast cancer, but said that there was only a very small risk i would get it from the therapy.  

she then tried to cheer me up with the positives.  no cancer, of course.  i wouldn't have to wear deodorant under my right arm anymore, nor would i have to shave.  so there's that.....

i tried to answer all her questions, but it seemed like she was just asking to ask, because she never seemed to wait for an answer.  my eyes were bad this morning, and it didn't even help when i teared up in front of her.  they are dry, and i'm still sore, and messed up after my asthma attack last night.  ( i tried too hard to clean the kitchen.... too much stress.)  luckily she did notice my eyes, and said that if i wasn't getting any better in three weeks, then we should send me to an ophthalmologist.

i'm worried about my eyes, and especially the ugly bags under them.  i'm sad about how long the treatment is going to be, but i think it's going to help to return to work on monday.

i'm scared, and a hella lonely.  i feel like i'm drowning in plain sight.  it will help to get the process started.... and to cry my eyes back to health.

i hope.

i wrote this poem before meeting the radiologist.  i now know i have been spoiled by my oncologist.....but maybe i won't have to talk too much to the radiologist.  anyway, these were my thoughts at the time:

happy anxious

healing

burning intense

curing

hoping for the best

but not believing

not yet

not yet

(soon)

soon.

what is unforeseen

i have a lump in my breast.

yeah.

you see, the rchop was supposed to take care of my lymphoma...and it has.... i have a shrunken tumour underneath my arm ready to be cooked with radiation.

then, i got a pet scan that said there was no other cancer in my system......

then.... two days ago i felt a lump on my right breast, near the cleavage.  it sort of feels like the cysts i got before, but it's deeper in, so i can't really get a good feel of it.

i don't know quite what it is.

i'm supposed to call the doctor, and set up for a mammogram.  (i always seem to be playing phone tag with the nurse on these things.)  i'm going to tell her i'm free anytime, and just schedule the damn thing.  (so many times i also seem to play "mother may i" with the appointment people.)

i just want to know what it is....and i don't want it to delay my radiation.

i'm so confused.  scared.  apprehensive.  and yet i'm hiding things inside.  i haven't told many, because i want to hide it away.....

i want to deny it exists for a while longer.

i was watching a-team last night.  it was the third episode, so i guess they were still finding their voice.  at one point, the girl reporter was scared.  the guys told her if she accepted death it would help a lot.

then i saw the beginning of "guardians of the galaxy" to-day and totally lost my shit.

i don't want to throw in the towel yet, but i'm tired.  i want to get back to normal, but this lump is throwing me for a loop.  i'm supposed to wait for facts before i go nuts, but it's very hard to right now.  my defenses are down.

why now?