telling people

i've started telling people at work about the situation.

there's shock. and a deep breath. and empathy all over their faces. but.... they follow my cues. and i use humour, and animation, and a bit of feistiness to prove that i'm ok with this.... and that not much needs to be said to comfort me.

someone said they didn't believe in God, but that they would think of me.

others have said they would do whatever i needed to be done. (i'm going to have a great mafia squad at the end of the week....)

all were positive. said they knew people who survived.

i have to survive.

one misunderstood, and thought i was not coming back. she said this was a good time to leave the library, what with all the changes that were being made. but i like the idea of people moving around more, and helping the patrons out there, rather than being stuck at the desk all the time. still, i understand that there are some workers that aren't wired that way... and would rather stay near the desk.

i know there's room for both. i just hope there's a space for me when i come back.

i wish i knew how long this was going to take. i'm at the impatient part. just get it over with! i'm believing i can go in, hear the news, and give two weeks notice. then, fight!

i'm believing i'm still in charge of the situation.

i know soon i won't be, though.

"what a falling off was there...."

interlude: to the one who counts

you held my hands that night. held them hard, and firm. i tried to move them, but couldn't. i didn't quite know what was going on.

i asked you.

you said you were trying to get me to be strong. i could feel you trying to strengthen me with your strength. will me into a sense of power that i didn't feel like i needed yet. i complied, as i always did. you always know best, as you know me more than anyone has before.

i'm scared.

i'm scared i'm going to die. not only is this cancer rare, but the blastic tumour inside of me is rarer even than that. the chemo has got to work... if not, i fear there isn't any alternative. radiation. stem cells. clinical trials.

but the chemo matters an awful lot.

i'll try to be strong. for the kids, and the sadness i'm putting them through. for my work, that i want desperately to go back to.

and for you.

i'm trying. i'm really trying to grow up, and yet keep that child in me that we both love. i know you'll help me. i know you'll be as near as you can be.

but i know it all comes down to me.....

i'll be strong

bagels and normalcy

i'm at the bagel place. i come here every tuesday with my youngest son. he does his homework, i try to write my poetry.... and we both spend the time waiting for his brother, who is in homeschool drama class.

it may be the last normal thing i do with him.

i don't mean to sound overly dramatic. but, with the diagnosis coming on friday, and the changes coming soon after, i can almost feel easy days like this slipping away. days in which people can depend on me to drive people places. times in which i am able to be let out alone, without being worried about.

i usually don't mind being treated like a child. there's a nurturing involved, and i love the attention that goes with it. i'm just hoping that the powerful drugs that are soon to go through me don't change me. i'm already enough of a bitch sometimes.... i don't need to lose the ones closest to me because of chemo.

damn, this entry is so scattered.... best stop for a bit.

heart scan

to-day was the echo scan for my heart.

this was easier.

i went in, and got the paperwork done. (they didn't call me ahead of time.) then they gave me a bracelet, and sent me upstairs with a file in my hand.

i got out of the elevator, and was immediately in a waiting room. ta da! i sat, and waited for my mispronounced last name. (no worries. i'm used to it.)

i went in, and a nice nurse asked me to disrobe from the waist up, and put on a backwards hospital gown. i was just barely covered when she knocked, and came in. (must have been behind schedule a bit.)

she told me to lie on my back on the examination table. i don't know why it took me a minute to comply.... i almost started to lie on my belly. she was gracious, and said that many people did that. strange.

she took my blood pressure. she asked if it was often low. (she got a reading of 100/something.) i said i remembered the pressure as being 109 before. she said it was a good blood pressure... but she acted surprised that i had it. )

i lied down, and she put three metal sensors on the top of my chest. she asked why i was here to-day. i told her about being diagnosed with mcl. involuntarily, she said "so young" .... and i let that remark pass. not much you can say to that. (some time later, she said that i seemed to be a very strong lady, and that i would do fine. it was very kind of her.)

she put gel on my chest....then she took the ultrasound wand, and moved it around in between my breasts. she told me to lie on my side, and dug into my left breast...upper, then lower. then, she had me lie on my back, and pointed the wand upwards, toward the bottom of my heart.

all angles. all the time.

she also was recording audio clips of my heartbeat .... at one point it sounded like an old washing machine. at another time, it reminded me of one of the babies' ultrasounds. i wanted to listen to it forever...just for the feeling of calmness it gave me.

she asked me to hold my breath at several points during the screening. it was to push back my lungs, and bring the heart into the forefront. sometimes, it was to get a better sound of the heartbeat. i told her at one point that i could hold my breath longer, if she needed it. ("i can hold my breath for a long, long time>" shut up, leslie nielsen.) she didn't need it, but she giggled a bit.

at the end, i asked her how my heart looked.... and she said that was for the cardiologist to find out. she did say that if there was something massively wrong, that i would not be allowed to go home....but i was allowed to go home. "go get a cheeseburger." i joked. she laughed. "yeah. knock yourself out."

i rose from the examination table. she tried to help, but saw i could do it myself. i am a good sized girl, no question, but i am flexible. i can run across the library at a moment's notice. i may be getting more tired now than usual, and i may be sleeping a bit deeper than i have been before...but i can do things myself.

i'm not sick on the outside, ok? it's just my insides that are going to war with each other.....

my heart looked good. and it was beating strong, right as rain. a poet's heart can take many things.... and turn it into good.

i hope my poet skills stay with me throughout this journey into hell....

very little

i'm working all day to-day. it's a wonderful madhouse of kids, adults, teens... computer users, dedicated readers, dvd and music fans.... everyone bustling into the kool aid house.

my customer service has continued to be uneven. i keep trying to help patrons without letting them tell me their stories. i think it's because i have enough on my emotional plate.... but a good library worker knows when to listen... and i haven't been listening lately.

i need to stop, and see what i can learn from people.... it's helped me in the past, and it surely should help me now, at this low level.

my boss was working with us to-day. she caught me in a difficulty with a patron who wasn't known to be very nice. that being said, i should have stayed on my guard, and been as polite as possible. instead, the patron admonished me .... and later on, my boss gently said i was abrupt, and often come off as such.

it was mortifying to me that she took the patron's side. but.... it helps me learn to be a better person .... as all of this will do.

i was once told by someone close to me that all i could do is work and fuck. i guess i'm taking this so hard because half my repertoire is gone. (or not.... if i can learn from my mistakes.)

anais nin says we write to taste life twice. i just wrote this out, and i feel better.... because on second evaluation, i can see myself improving. also, it's always been hard for me to hear other peoples' stories. my heart is on my sleeve so many times.... and right now, i have to think of me....

....no matter how much i don't want to.

pet scan

so, i woke up this morning... and you were on my mind.

(sorry... private song joke.)

anyway... i got ready pretty quickly, then i dawdled, which i've been doing a lot lately. it's like i know i should be there on time, but it's just a mile away.... or "they can't start without me"... sometimes i think it's defiance....but it may be more to do with having control of the situation.

...while i can still be in control.

(actually it was a bad mistake, because enigma and i got into a one sided argument over how much sugar i eat. i say not much at all... his silence, and glare said differently. i need to learn not to talk to him unless totally necessary. my heart was low on the way out, and i can't have that before a procedure like this.)

i got there, and after a small talk to the insurance person, i received a wrist id bracelet, and waited in the waiting room. (i have had to have a bracelet for the mammogram/ultrasound, the ultrasound/biopsy, the bone marrow biopsy, and now this. i suppose it's to make sure i'm identified, just in case i go unconscious during the procedure. it's a bit jarring having one on, though. it makes the whole thing that much more serious.)

the nurse/technician led me to the back, and started an iv. she checked my glucose level. it was 92, which was right in between that 60-200 range that was needed. she then took out this small needle syringe full of the sugary radiation stuff, and injected it in. it wasn't very much at all. she then pushed the liquid through with a saline syringe. (can you tell i didn't go to med school?) then she said she'd be back in 45 minutes. she turned off the lights, and i had a bit of a nap.

(next time, i'll tell them i want to lie down.... i'm sort of sore from my stubborn "i'm staying upright" attitude.)

then, i was lead to this thin table, with a rest for my head. since i didn't have underwire on my bra, i could keep it on, but the earrings had to come off. (i was being scanned from my head to my knees.) once i was in position, she told me to put my hands over my head. now that was hard. there was this thing around my head, to keep it in position, and i had to put my arms over it... and i couldn't get comfortable. i hope the image isn't blurry....because at one point my right elbow was too far, and it hit the side of the tunnel...

it's always my right side. sigh....

i stayed still. i was promised that it would take 30 minutes. she said it would do a practice run through my body, then start and stop many times. also, even when it felt like it wasn't doing anything... it was doing something.

so, i stayed still .... and the procedure started.

i thought i would be slick, and watch to see how close the tunnel was around me. big mistake. i shut my eyes, trying hard not to think of all the "buried alive" stories i read, or saw on "amazing stories." this is what i thought of:

"carry that weight" by the beatles (every nuance of it ... down to every drumbeat... it's great when you hear a song over and over enough to know it that well...thank you, mr. starkey.)

the beach, and the last time i was there. what i should have done. how far i should have swam.

conversations at philip seymour hoffman's funeral. (i had just seen the amy adams interview, where she awkwardly cried in front of jim lipton when he asked her about "doubt.")

what i would do if i won the lottery. (there are so many people i'd give money to.... after paying off the house, and getting a used car.... and making sure the kids were financially able to do what they wished.)

what i was going to eat at the chinese place (there better be broccoli. the last time, there wasn't hardly any vegetables, and i ended loading up on....)

"ok, we're done!"

blink, blink! uh... sure... ok.

i was offered some orange juice, and peanut butter crackers. (juice, yes. crackers, no.) then, i was allowed to go.

now, i'm hoping to get a little nap before work. all i have to do for the rest of the day is look normal, and drink a lot of water. surely i can do that in four intense, busy hours. right?

the watched pot

not much to report to-day.

at work, i have become the watched pot. when am i going into chemo? how long will it take? are you staying in your committees? all excellent questions that have to be put on hold right now, until i figure out what's going on inside of me.

someone came to console me to-day. he asked very hard questions.... like "would you be cured if they cut off your breasts?" and "don't you know anything by now?" i relished them, because it prepares me for when my co-workers find out. i also was glad that he asked me, because i didn't have to be polite with him. he took my bluntness in stride, thank goodness. i did wish he didn't admonish me for not having a positive attitude. i understand i'm supposed to want to be cured, and always have a happy face, but i think it's realistic to say that this is going to be a long, hard fight, and that i will go through a lot of pain.

at one point my boss came around the corner. she saw me on a couple of social networks. now, normally she would gently scold me, and list all the things i could have been doing. instead, she said "oh... it's not that busy right now, is it?".... and didn't say anything else. i teased my immediate boss, and he teased back. "how long do you think that will last?" "pft... probably only a couple of days."

you take laughter where you can get it.

i have found myself being quite blunt with patrons. i usually try to listen to their stories, and mollify them along the way. instead, i've waited the story out, and immediately offer solutions. i don't want to be this cold... and i hope i don't become this unfeeling person. i think maybe it's because i haven't been going to bed early.

and here i am typing about my day.... six hours before a pet scan.

there's hope on the money front. i hear that my job may be able to help with these large co-pays. fingers crossed, even if they can only do it once. every little bit helps.

as i understand it, i'm supposed to go in in the morning, after having no food for several hours. i've already had a low carb meal (still delicious... green beans, broccoli, and chicken with cheese on top of it) and no water, toothpaste, or anything after midnight. (i'm turning into a gremlin, i swear.)

then, i have to hold very still, after drinking a highly sugared drink (i bet it's jolt cola!) and let them scan my entire body, in search of the cancer.

i hope i can sleep through it. i'll lie back, hold still, and dream of chinese food.

here's hoping.....

the money

i'm going to have to learn not to cry every time people ask me for money.

the biopsy wanted us to pay an $150 co-pay. i cried over the phone when i found out, shocking the nurse, and embarrassing myself.

now, i just found out the pet scan wants $2,000. luckily, we can pay it off in installments ... but the lady will call me to-morrow to make sure that i have some form of payment before i go in there.

Lord knows how much the echo will be.

i need to be real. this is going to be expensive. there is no way i can keep from that. but, the sooner it's all done, the sooner i can go back to work, and earn again. and maybe one day i can learn to save money.

i just wish something like this wasn't attacking me from all angles.

bone marrow biopsy

i had the bone marrow biopsy this morning. i'll try to jot down all i can remember.

first thing i need to remember is the fact that it was an outpatient procedure. that meant that the co-pay was much higher than an office visit. just something to prepare myself for next time.

we arrived at the hospital at 5:30 am. there were a few things to sign, then a short wait in the waiting room. then a volunteer gathered all seven of us up (including our support people) and took us up the elevator to the operating waiting area. there, i was told to take off everything (including jewelry) and put on a robe, and matching socks.

when i was ready, they asked me how tall i was, and how much i weighted. if i was allergic to anything, or if i was diabetic. what surgeries had i had, and was i still having periods. then, i had to give them a urine sample (for a pregnancy test). they gave me an i.v. (i had to be stuck twice), and left me to wait for the nurse to take me to the operating area.

while we were waiting, a nun came in to ask if we needed prayer. i was a little surprised, because this wasn't a catholic hospital. but, i haven't ever turned down a prayer.... from anyone. (in fact, when i first found out about my condition, i asked a few of the best prayer warriors i knew to think of me....)

this nun was very traditional. she even had a german accent. enigma held her hand as she prayed, but for some reason.... i couldn't. and, almost immediately, i was crying.

sometimes i think i'll never stop grieving.

the wait for the nurse felt like forever. i felt enigma's eyes on me constantly. it made me feel exposed...uncomfortable.... and even a little bit angry. we haven't connected in years, and i couldn't think of a thing to say to him now. i was very upset that i couldn't have the camaraderie that i needed.

i felt so fucking alone.

the nurse finally came in, and wheeled my bed to the operating area. other nurses were there, talking about a patient who had been difficult. i didn't mind. i like hearing people go about their jobs .... learning about their personalities by the way they reacted to situations.

the nurse put an oxygen sensor on my finger. she put heart rate metal things on my chest. the anesthesiologist came in, and gave me a drug for my nerves. (she ended up giving three drugs in all, including one to help me forget the procedure.)

i was told to lie on my left side, and scoot close to the nurse. the doctor came in. now, even though three nurses told me about the procedure, and asked me to sign a form saying i understood the procedure, on a piece of paper that asked me to write down in my own words what i thought the procedure was about.... even though i went through all that.. the doctor explained the procedure to me.

i let him. after all, when i read up on the biopsy, it said that i would be hearing someone scraping away at my bone, and that i would have to hold as still as possible while they did it. what they were doing to me was much different from what i read.... and i was glad of it.

they put an oxygen mask over my face... told me to concentrate on breathing through my nose....

and then i woke up, on my back. with a bandage on my right lower hip.

right as rain. no pain.... not very much grogginess.

i had to be watched for an hour after the procedure, which gave the nurse plenty of time to talk to me. she was very sorry that i had cancer.... and told me that she heard that the nurses at cancer treatment centers get extra pay for all the vitamins they take. she also said something good about asparagus.

for some reason, i asked her what her favourite sound was at her job. she said "silence." in the midst of our conversation, there was a huge alarm, and a "code blue" announcement. "that...." she said "is my least favourite sound."

we talked a bit about my job. she said she heard that libraries were soon to be extinct. i wasn't as articulate as i usually was, but i did let her know that my library is a very popular place.... full of kids, parents, and teens.... all in search of personal entertainment, whether it be our computers, the books, the cds, or the dvds.

i'm not too worried about the future of my library....

she asked me the favourite sound in my job. i told her that there was a holdshelf near where i worked. i loved hearing a kid find the book he was waiting for, and the delight in his voice when he got to say "it's finally here!" (that happens daily....)

after the hour was up, i was wheeled back into the waiting area, and told to change back into regular clothes. i was surprised at how groggy i wasn't feeling. enigma came over, and sat next to me. i slowly put on my clothes as he watched.... luckily, soon after he was told to bring the car around to the entrance of the hospital.

i got dressed, and a volunteer pushed me in a wheelchair to the car.

it's interesting. the only time i remembered being in a gurney.... or in a wheelchair... was when i had my babies. and now, years later, i'm trying to get rid of a swelling that's inside me.

a baby no one ever wanted.

back to work

to-day i went back to work after a week's vacation.

when you close a library for a day (this time it was for president's day), it always seems doubly busy the next day. monday people come in on tuesday, surprised the doors were locked. tuesday people act all confused that it's busy. add a full week of great weather (it made it to seventy degrees to-day), and you have a huge amount of people, all excited, and stirred up.

i was happy to come in and help. i was going to have a bone marrow biopsy, but when i got to the hospital at 5 am this morning, i found out it was scheduled for the next day. it turned out ok, though. work really needed me there to-day, and i really needed to work.... and find out things.

i told my boss about the cancer. my boss is very businesslike, and blunt. i wouldn't have her any other way. it's great to be able to have someone no-nonsense to lean on, sometimes. i tried my best to be just as businesslike with her, as i told her about my condition. i didn't cry .... and she understood what i was saying without me talking vaguely to her. it was a good talk.

it was hard to see her in shock, though. the hug i got from her was nice, but i could feel her sadness.

i looked at what vacation time and sick leave i had left. four months, then i would have to start paying for my own insurance. we have family members who say they will help us .... but i have no idea how much we'll need. or how long chemo is. or.... anything.

still, it was good to know i had some time to play with.

i'm trying to figure out how to tell people about my condition. i told a couple of people, and i know that word will travel, but i want to make sure the right people know. i also want to take out a lot of my work emails.... memories from many people. i know there are some emails from the time when my son worked at a library, too.

it's funny how many memories you want to keep ....

i need to learn not to run around as much as i did to-day. i could feel myself getting more tired than i usually have. enigma told me it was because i hadn't got a full night's sleep, which probably is true. i need to remember that sleep gives my body time to heal....

....and there's so much to heal from right now.

it started like this

it started like this.

on august 14th of last year, i woke up feeling feverish. my right side felt tender, and i had the chills so much that i had to take a warm bath to calm down. soon after, i could feel a lump underneath my armpit. i had no idea what to think, so i wrapped myself up in blankets, and went back to sleep.

on september 9th, i went to the doctor. i told the nurse in detail what happened, and she wrote down the information on the chart. i was ready and waiting to tell the doctor the same thing.... but something in me stopped. he breezed in, like he always did ... not really listening .... not really looking at me .... sighing .... i raised up my shirt, to show him what was wrong, but he waved it away. said it was a carbuncle. said all i needed were some antibiotics.

i have a very expressive face. i'm sure he noticed some hesitation.... so he asked "well... what are you afraid of?" in a very blunt way.

i tried to answer, but stuttered, and couldn't say anything. without saying the word cancer, he reassured me that there was nothing to worry about. it was a carbuncle. meds would bring it down. let him know if it didn't. thank you.

i took the antibiotics. i thought that maybe the swelling did go down. i went on my way .... and didn't think about things.

on january 20, i went back to the doctor. i was making it my new year's resolution to take care of things. i needed new contacts, and maybe some glasses. my eczema was troubling me, and i needed to go to the dermatologist. but, first things first. i thought the lump underneath my arm had gotten bigger .... and i really needed to get it checked.

(it took me a-while to come back to the doctor. i had tried to call earlier, to get more antibiotics .... but i wasn't sure that the swelling had gone down. i examined it, and it felt one way. enigma felt it, and he wasn't sure. so, i didn't say anything, and i didn't ask anything, and nothing happened.)

when i explained things to the nurse, she was visibly agitated when she saw the swelling under my arm. she told me that i needed to make the doctor look at it... and feel it. this time, she found me a dressing gown to put on. she told me things would get better ... and left me in the room.

i heard her in the hall, talking to the doctor. telling him he needed to check my further. i heard him say "well, if it isn't the size of a softball, i'm not going to do anything."

(i still don't know how big it is.)

he came in. i pushed aside my dressing gown. i raised my arm over my head like the nurse said to do. he sighed. said it was probably still a carbuncle, but just to be sure, he was going to get it checked. he was 90% sure it was nothing.

two ultrasounds, a mammogram, and a biopsy later told me .... it's something.

mantle cell lymphoma.

and so my journey begins .... on the road back to me.