speed lump

it's been a-while since i've blogged.  it always seems like i blog here in the same attitude as when i clean the living room...  "oh shit, the relatives are coming!"

"oh shit, is that a breast lump?"

yeah, another one.  underneath my right breast, at the crease.  part of me thinks it's stress (it appeared the day after a horrific country Christmas journey, with allergens and pressure a-plenty).  i don't want to take it seriously.  i left a message with the oncologist, .  that's all i can do.

my holidays were up and down.  the first Christmas was a chinese restaurant event, with immediate family and son's girlfriend.  it was good food, and "head's up", and giggles, and english crackers.

the second Christmas was in chouteau.  i cried nearly all the way there.  i cried when a feral cat scratched me for no reason (the poetic side of me said "i didn't even do anything!  i'm a victim!  even the cat doesn't like me! why do i live?)

at least i got to take pictures at the man-made lake in the back.  i miss the water.  i miss the calm that comes with it. i miss having that defiant control over my life that i loved.

i miss me.

will let you know about any updates.  oncologist visit on the 15.  pet scan can't be scheduled until after the 26.  that's all i know now.

hard times?

no washer
no dryer

one car that starts intermittently
one van that needs perhaps ten minutes to warm up.  if not, it won't reverse, or shift from first to second gear.

don't ask about the home life

no money for Christmas
no way to earn more

a worry about bills that are coming
a worry about a daughter's future

a wish for peace

yet

i may have beaten this cancer thing
i may have taught a boy to read (who i thought would never read)
i may have given a boy a love for math (who i thought would never algebra)

(yes, algebra is a verb)

a feeling that i've grown closer with the kids through this.... that they have grown up (in a good way)

a feeling that i can see this through, if i just organize better

a feeling of tired hope

why must i endure so much?  so i can get much.... by learning to handle it all.

let the lessons continue......

checkup

this account of my appointment is as i remember it, from earlier this morning.

i woke up on time but, as usual, the internet pulled me in, and i was a bit late leaving the house.  i asked my daughter if i could use her faster, newer car and was soon zooming down the highway.

(there's a bit of pressure at home right now.  the breadwinner lost his job.  he's hearing from everyone else that he should have left this job a long time ago, and he's learning from experience, and their wisdom.  still, it's a hell of a hard time to lose work....holidays coming, and medical bills, too. )

i arrived at the cancer center right on time.  because i no longer had a port, i was able to go in pretty quickly to get my blood drawn.  next to me, a man in a wheelchair was struggling to take off his jacket.  i started to get up to help him, but a nurse was soon nearby, encouraging and aiding.  his hand was purple, and his movements feeble, but he was of cheery voice, and thankful heart.  i was glad for that.

after my blood draw, i went upstairs to the oncologist waiting area.  it wasn't that long before my name was called.  before i left, i made sure to talk to a woman whose hat i admired.  it was a cloche hat, with a scarf underneath that helped cover her baldness.  i told her she had a wonderful hat.... just right for going on adventures.  (i meant it, too, even as i encouraged her.  i wish i didn't have a big ass head.  there are so many clever chapeaus out there....)

i lost .4 lbs.  the nurse was encouraging, and loved the fact that my hair was a bit longer, and much thicker.

my oncologist came in, and gave me a hug.  she seemed a bit distracted to-day, so i was less enthusiastic to match the mood.  (not intentionally... it's just how i am.) i told her of my shoulder joints aching after a nap.  (she got me a prescription for big ass ibuprofen tablets). i told her of a skin rash that wouldn't go away.  (she gave me a prescription for prednisone). i forgot to tell her about my tingling hands, but they aren't really that bad, and there may be precious little i can do about it.  oh well.  next time.

my white blood cells were good, as was everything else.  it was a pretty uneventful visit.  she did tell me, though, that if the radiologist didn't say anything about a pet scan appointment by mid december, that i was supposed to call her so she could encourage them to do so.

visit co-pay: $40.  prednisone: $10.  big ass ibuprofen: free, apparently.

i see her again in mid january.

on the way out, i looked for a particular person.  there was a lady who took my financial information on the first day i was at the cancer center, many months ago.  i asked her if i could talk to her for a moment. she asked what i needed, and i could tell she was a bit harried. i told her it wouldn't take long at all..... she let me come in.  i told her she was the first person i talked to when i came into the cancer center, and that she calmed me down, and made me believe that everything was going to be all right.  she responded "of course it's going to be all right!" and hugged me immediately.  she thanked me several times, and said that this was just what she needed to hear..... i told her i knew how important it was to make someone feel comfortable, because i do the same thing at the library.  she smiled and nodded.  i said if she ever went to my library, i was sure to make her feel welcomed.... as welcomed as she made me feel that day.

i needed to tell her these things.  i was glad she was happy, but i would have found a way to let her know even if she wasn't able to hear me because of the stresses of her day to-day.  i do so love to help.... and i'm glad to meet people who love to do the same.

the prednisone i'm taking right now is in smaller doses, but i still have that teeth gritting tension that comes with it.  i'm trying to eat only what i'm supposed to, and in the right amounts.  mostly, i need to drink more water, and try to calm down.  the drug gets so much of my mind racing that it's hard to relax.

at least my levels are good, and i'm getting better.  i just hope all of the cancer is gone.  (duh.)  soon i'll find out, but until then, i'll try hard not to think about it.....

tell people they are special.  tell people when they do good.  do good, and try not to let the world keep you down.  there's a sun somewhere, and it will shine through the clouds.....

....eventually......

i can/ i can't

i can work more hours in the day now.

(i can't get past the last hour without hobbling around)

i can understand more and more spanish at work

(i can't remember enough to communicate back in complete sentences)

i can breathe better than when i was on chemo

(i can't go a day without crying)

i can sleep more soundly when i want to.

(i can't wake up without my hands tingling. )

i can live.

(i can't go a week without wishing i didn't.)

two week checkup (radiation)

got up early to go to an 8 am checkup.  it was rainy, and grey.  the radio said that this was as grey, and wet as it was going to get all day.

so, if you want to get a chance to see the rain, you have to wake early.... (which is a good thing to me)

i drove without thought to the hospital.  i walked across the street as if i was still doing it every day.... as if it were easy to fall back into routine.

i greeted the main receptionist.  she said "hi!"  in that 'where you been, good to see you?' way that's hard to fake.  i told her it was a good day, except that my hair was bugging me like crazy, looking all fabian, and sticking up and all.  she said it looked good, but giggled through the compliment.  nice lady.

i strolled into the office at 7:50.  no coffee.  the television wasn't on.  nothing.  not good.

i knew i had some time, so i went further in, where the radiology waiting room was.  sassy was there!  so was quiet first lady....but not garbo, unfortunately.  sassy was saying she had just talked about me the other day... and how the conversation wasn't as good as when i was around.  she pointed to my chair, and said a guy sat there the other day.... and she expected him to sit down indian styled like i always did...but he didn't.  it's funny what people will remember about you.  :)

i told her about aquapor, and how it was better, and she told me about how it was garbo's last day just yesterday.  (damn) .... then, she wanted my phone number, which overjoyed me.  i didn't get a chance to ask how she was, only enough to know that she had two more weeks.  i'm so thoughtless!  but, it seemed like we were going back and forth happily enough.... so i guess we showed each other we cared in other ways.

it was good to get a hug from her.

i went back in the waiting room, and sat again.  i caught up on the cancer to-day magazines.  cancer to-day is the magazine that picks a celebrity, and tells you how they lost their life to cancer.... then tells you they could have survived if they lived to-day.  i sort of wish they would do an article on jackie onassis, because time and time again i was asked "you got lymphoma?  didn't jackie o die of that?  hmmmmm."  this would have reassured me, and them.  (but mostly me.)

while i waited, a frail older lady came in.  she walked to the receptionist station, and looked in.  she shook as she leaned on the counter.  i could tell she felt that the world was very big.

i asked her if she was going in to radiation.  she said yes, and that it was her first radiation.  i gently guided her to the back room.  she hesitated a bit, but i told her that the radiation waiting room was in a different area.  she nodded, and smiled, and let me go on.  i talked calm, and soft to her as i opened the heavy door to the room.  i told her she could pick her gown, and have a seat, and that they would call her name soon.

i got to do all the things i wished someone would have done for me...on my first day.  what a great turnaround that was for me.... to help.

good day.

soon, i was lead back to talk to the radiologist.  i haven't lost weight (darn) but the nurse said i was looking very good.  (kind of her to say.)  when the radiologist came in, she asked how i was.  i told her about the splitting skin, and how my oncologist prescribed silver sulfadiazine.  radiologist shook her head, and told me not to do that.  she said the cream turns into sulfur, and that it wouldn't help me heal at all.  she asked to look at my skin.... and said it was unusual to have problems after radiation.  she said she had something to help.... and walked out of the room....

...coming back with a handful of aquapor samples, and a coupon.  (no worries.  i knew it was working better than the sulfadiazine, anyway... and now i didn't have to buy any of it for a-while.)

i did say i'd try to tell my oncologist about it...but my radiologist said it didn't matter.  i may still tell her anyway, to educate her... or not.  it's really my fault for asking the oncologist to help with the radiologist's work.... but i was really hurting when i went in, with split skin, raw areas, and the entire right shoulder tense from having to hold my affected area in a certain position to keep it from hurting......

i'll know better next time.

radiologist said i was looking good, and said that she would see me in three months.  i asked her about the pet scan.  she said that she was under the impression that the oncologist would schedule it.  i said the oncologist thought that she would handle things.  the radiologist said she was glad i told her... then we both realized that it was because of the fact that even though i got sent to a cancer center, my insurance still sent me to other places for ct scans, pet scans, and radiation.

radiologist said that i'm doing very good.... i said, offhand, that we wouldn't know until the pet scan.  she disagreed.  she said she didn't feel any swelling, and didn't expect to see anything on the pet scan.  she said that she expected me to be well, and that she was very rarely surprised.... and that i should have a good holiday, and not worry about it.

i have a good way of putting things like this out of my mind.  unfortunately, it also makes me forget wonderful things that happen, too.  i may try to write a blessings blog, to remember the good..... if i have enough energy.  i slept most of to-day, trying to recover from this morning.  juvenile, i know....but i needed the time to myself.

i can't sleep off the rest of my life, though.  too many wonderful things to experience, and help with.  just because i'm not happy, doesn't mean i can't make everyone else happy.....

or so they say.

"well" check up

on thursday, i saw the oncologist.  i just now have enough energy, and time to write this.  sorry!

i originally had an appointment on wednesday.  at the beginning of the week, i was asked if i could work a shift for my boss.  i called, and after much finagling (it always seems like they only have one person doing appointments at a time) i was able to change the appointment to thursday.

i went in at 11:30 am, and got my blood drawn soon after.  (when you no longer have a port, you don't have as much of a line to go through.)  it hurt a bit more than usual, but i filled three vials pretty quickly, so there were no worries there.

then i waited in the waiting room.  well, actually, i paced, because i couldn't get comfortable in a sitting position.  (the radiated area under my arm was raw, and it made it hard to sit down, with my arm down on the affected area) i walked, looking out the windows at the perfect day.  i watched two kids (who didn't have cancer) as they hid from each other, scooting back and forth on the carpet. (it was the last day of fall break)  for a-while, i took pictures of the hallway nearby.... here's one sooc:

a nurse went down the hall, towards me.  i lowered my cell phone, and let her walk past.

"sorry!  didn't mean to mess up your pictures."
"no worries.  just.... catching the sunlight, and the angles and ...all."

she looked where i was pointing, and really seemed like she was listening to me.

"and the sun...makes all these great slanted shapes, and all.... you have a very pretty building."

she nodded her head.

"wow.... thank you.  no, really.  thank you for sharing that with me.

(nurse walks off, to continue her day, while a fabian looking girl shuffles her feet, in an "aw shucks" way....)

and that's how i am when i'm trying a new hobby that i'm no sure of....

after a long wait, i was motioned down another hall, to be weighed, and seen by the nurse.  i had lost another pound.  i didn't have a fever.  the nurse was very complimentary, and told me i looked much better than when she last saw me.

(everyone there is happy, and attentive.  they want to be there, and they don't seem burned out by so many responsibilities.  no wonder i felt so spoiled by them, in comparison to the hospital, with old rooms, no sun, and doctors who didn't have the best of attitudes.)

i sat, and waited for my oncologist.  i washed my hands twice, used the nice smelling hand sanitizer, ran across the hall to use the restroom, and did the whole routine again.

finally, my oncologist came in.... two hours after the time i came in.  and... i didn't care, because there was that much love there.

yeah, i know.  sappy me :)

so, my blood levels were good.  she said that, on the screen, the platelet levels were flagged red, but that she didn't know why, because they were within normal levels.  (i think the machine was just saying that my levels were going down ever since she first saw me, because of chemo, and radiation.  don't think i didn't still worry about that red mark, though.  more fruits and vegetables for me.)

i told her about my raw spots, and showed her.  she knew of a cream to try, and encouraged me to move from eucerin to aquaphor.  i asked her about the pet scan, and told her that lex luthor hadn't told me why i had to wait three months or more to have one.  she knew immediately which doctor i was talking about, and giggled an answer to me.

pet scans show where there is abnormalities in the body.  it would be hard to tell where the cancer started, and the radiated area ended if i took a test now.  because of that, it would be better to wait until things died down inside of me.

she checked my liver, my kidneys, and my ankles..... then as i rose up, told me that now we would be spreading visits out.... to be less and less frequent...because of how much progress was made....

and that's when i started tearing up.

noticing immediately, she asked what was wrong.

we talked about....the fact that you do all you can do, until all that's left to be done... is wait.  but she reassured me again that i wouldn't be waiting for nothing.  my cancer was only in one area... and it reacted well to treatment.  i was going to be ok.

and she hugged me, and said that she had been thinking of me.

and i believed her, because she was the type of doctor who cared..... and i could tell she didn't lie.

it's ok to be real with your patients.  it's ok to reassure.  if you do this, it doesn't make you weaker in the eyes of your patients....

you're stronger... because they know you care.  and they trust you all the more for it.

anyway....

so,  i was told to come back in november.  they tried to give me a flu shot, but my insurance wouldn't let them.

later on, when i picked up my prescription from walgreens, i took a chance, and asked them if they could give me a flu shot.  they could.  at 9:30pm!  for free!

"do you have any underlining conditions or diseases?"
"just lymphoma.  but my oncologist sent me here."
"oh, then that's all good, then.  oh, except for the lymphoma part."

i nodded, and smiled.  it was good to have someone jovial continue to be jovial, even when cancer entered in the conversation.

it was good to not be the only one in the room who was cancer's clown

the flu shot made me lay low for a day and a half, and i'm still not 100%.  i don't know if it's because of the cancer, or the shot (i have heard of others who don't feel well after this year's shot, either).  plus, i haven't been writing as much as i should.

i'll have to see about doing more.... hopefully while i wait for people at rehearsals..... i always seemed like an untapped tree when i don't write... way too full of sap.

...hoping to be "well" soon...

last radiation

i'm not sore.  i'm numb.  no sleep.  hostility in the air.  

good morning!

went to the donut shop, which ended up being open at 4:30 am!  is anyone even alive at 4:30 am?  i went to the supermarket for kit kats, snack cakes, fruit bowls, and combs.  (suddenly, i need a comb, and so do the boys.  desperately.)

i arrived at the waiting room just in time to see smiling shy one, which was great.  once i changed, sassy came in, as well.  garbo, too.  they were happy, and surprised to get kitkats.  (i love the slogan gimme a break.  all of us surely need one.)  we talked about the future, i name dropped my library several times, and sassy, for some reason, wanted to make sure i knew her name, and wanted to know mine.  she sees with eyes of feeling, so she knows y road is heavy.  i wish i could talk to her daily.... she has so much wisdom.  

garbo tried to talk about support groups, but sassy said all she needed was family.  garbo said her husband was kind, but he just didn't understand.  we all nodded, and i was soon called in the room. 

after the plank, the technician said that he hoped to see me again, but under better conditions.  he is a very amiable fellow, and i must find a way to tell his cousin (someone i work with in the library system) how good he is.

then came the visit with lex luthor.

it was a very quick, very light, very non-evasive, very rudimentary exam..... he didn't even say anything about the breakout on the back of my shoulder... or comment when i said my shoulder was sore... or anything.

he said that they would schedule a follow up with the other doctor, and he was almost on his way out the door when i asked about the pet scan.

he said that i would not be getting one of those for another three to six months.  

3 to 6 months.

so.... nothing.

he whooshed on out the door, and i went back to change.  garbo was still there, so i sat next to her, and told her about my news.

gasp, she said.

the lady near us (i had only glimpsed at her because she usually came in after i was done with my sessions) said "well, that's when we have to take it by faith, right?"

garbo nodded, uncertainly.  i sighed a little.  inside, i was giving her the raspberry.  

shit.

well, in another week i see the oncologist.  then, a week after that, the radiologist.  so, at least i'll be watched over.  and, somewhere down the line, the radiologist will schedule the pet scan.  then i will know.

funny... i don't want to take off these stickers.  there are two under each arm, and one on my breast.... x marks the spot.  if i remove them, will the cancer come back?

don't be silly, jamison.  let go of your skepicism, and go by faith.

to-day, i will wear as much black as possible, and not talk much.  hopefully a long nap will bring back the sunshine to me.

oh.... one more thing.  i drove home.... the same way i drove when i had the wreck yesterday.  i went a little slower, and conquered the road again.  

i wish i could conquer the fear and uneasiness i feel at this time, now that i'm in a waiting period.

and so my watch begins

 

2

so much has happened, so forgive me if this is sparse.

smiling one was not there when i arrived.  i was a little late, but i didn't think it was that late.  i put on a gown, and vegged for a bit.  garbo wasn't there.  finally, sassy came in, with a spring to her step.  she asked how i was, and could immediately tell i wasn't up to snuff.  (the affected area was sore to-day.)

we talked a bit about her doctor visit, and the morphine shot she got.  she felt cautiously better, but still was praising Jesus.  wonderful woman.

a fragile wheelchair bound lady came in, pushed by a silent caregiver.  she wanted to talk to a technician immediately, and wasn't intimidated by the borders of the curtains... she wanted to roll right in.  soon after, she was rolling back, putting a gown on with lightning speed.  soon we all were sitting, waiting.  speed demon asked me how long ago was my chemo... and what kind.  what she was really interested in was hair growth, and she was encouraged by my thick mass of porcupineness.  sassy and i both advised her to grab the biotin.  that lead into what vitamins everyone was taking.  i thought i took a lot!

time on the plank was uneventful.  one more after this.

time after the plank was eventful.  these are the facts.

i was driving home, on the right hand lane.  someone did not see me coming, and turned left in front of me.  it scraped the front end of my daughter's car hard, and pulled out the right front end thingy (over the right tire).  i was going slow enough that it didn't seem to jar me.

the driver asked if i was ok.  i told him i thought i was.  he urged me to get the car off the road.  i got on the phone with enigma immediately, and asked what i should do.  he was frustrated with me, and said he would be there as soon as he could.  did i call the police?  well, i better think about doing that.  i did.

the man again urged me.... but i was under the silly impression that you shouldn't move a vehicle.  (later on i found out that if the cars are movable, in my state law it says you should move them.  my bad.)

he then said i should get out of the car, since there was so much traffic.  i did so.  i took a picture of the front end of the car.  i was too scared to take a picture of his.  (it ended up scraping the right side of his, and causing it to be... undriveable?  i was lead to believe he had the worse damage.)

he said he was just starting a new job, and his mind wasn't on his driving.  he surely didn't need this.  i said that i was just getting out of radiation, and that this wasn't a great thing for me, either.  i wasn't mad at him.  once, when i was young, i turned left into traffic, thinking things were safe.  they weren't, and a car ran into the side of a station wagon that was given to us by family members.  it was not a good day.

still, it wasn't a competition.  even if it was, i won because i have cancer :)  (omg, i'm so crass.)

the police officer came rather quickly, and she took all our information.  by then, enigma was there, taking a picture of the front of the car, and pulling up the insurance company on his phone.

the police officer got both sides of the short story, and was satisfied with what she heard.  he did not have insurance.  usually, that meant that the car would be immediately impounded, but she did not do that.  also, we need a new sticker on the back, but we have 30 days to get that.  she let that slide on us.

after arriving home, i was told that i had to drive the car to get an estimate.  i said i was tired, and worn out.  that didn't go over well at all.

i then said i would do it, but was told "oh, no.  you're tired, and worn out.  i'll just take a day off somewhere, and do it myself."

the lines have been drawn long ago regarding this life i live.  i know they are there.  i just hate tripping over them.

i want to die so much i can taste it.

what does it taste like?  freedom.

anyway.....

after i begged to be allowed to go, i went.  i had to play the feminine card, because the mechanic didn't want to put on paper the price of the repair.  ("could you write that down, so i can show my husband?" i said, in a shaky voice.)

after that, i was able to come home, dismiss school for a day, and hide in my room.

i keep debating about calling in to work.  we are short handed, but i'm sure they will understand.  plus, if i go in, i wouldn't be much use.  then again, if i go in, it will take my mind off things.

these are the debates i have in my head.  be good, and do work, like my mother always did.... or hide in my room forever.

anyway.....

so, in summation,  it turned out ok, except for the humiliation, the anger, the soreness (i don't know if it's from the radiation, or the accident) and the intense feeling of shit ....no, that last part is always there.

i initially wanted this blog to talk about my cancer journey.... to remember procedures, and get out the pain caused by the mess of it all.  i can rise above the illness, (i'm sure i can) but i don't feel like i deserve the promise of life.

not this life, anyway.

3

sassy wasn't feeling good at all to-day.  her hip was in pain, and she said it was all she could take to get there.  garbo was in a fog from lack of sleep.  the smiling one i always see at the beginning shyly asked if it were my last day to-morrow, and listened to our animated conversations.  it's too bad i won't find out much about her.... she seems nice, and peaceful.

time on the slab was hard to-day, for some reason.  it took longer... or at least felt like it.  as i waited for the scan to begin, i started to tear up.  i tried to talk myself out of it.... i don't know why i was even doing it.  maybe it was the stillness of the place... or the procedure... i don't know.  it's hard trying to cheer yourself up when you're surrounded by metal, and radiation.

the nurse helped me up, and casually remarked that wednesday was my last day.  i said that i thought because i started on tuesday, that i was to finish on tuesday.  she said that the "boost" needed to last five days.  i said i was cool with that. she was glad, because she hated to be the bearer of bad news.

and i am ok with it.  i'm not really ready to give up the active fight, you know?  at least i'm doing something....

but, now that i'm back home, i'm finding myself shake more than i have before, and i'm tearing up again.  nerves?  probably.  i was never meant to be a fighter like this, i guess.  

goals

i hope to be cancer free one day.

i hope to be a better mother to my children.

i hope not to hold myself to the expectations of others.

i hope never to cry again about being unloved.

i wish to make everyone around me happy.

i wish and hope for the day where i don't think about killing myself.


baby steps.... i wish for a new day to think of others, and forget the hopelessness of myself.

3

sassy hurts, especially in her hip area.  she leans to one side as she sits.  it's hard to see her that way, because she's been the one that's strong, and spirited.  i wish for her a night of no pain, and good news from her primary doctor monday.

garbo asked a lot about my future.  she was encouraged by the fact that things were almost done for me.  i'm happy, of course, but scared at the same time.  luckily, i could tell her that, because i knew she would understand immediately.

i swear i taste metal now.  maybe it's psychological, but it may also be because of where the beam is hitting me.  strange.

there's a dressing room on one side for women, with backward gowns and everything.  on the other side, there's a place that's meant for the guys, but they never seem to go in there.  we ladies sit down in our gowns, and the guys lounge around in their t-shirts, waiting for the chance to stroll on into the treatment rooms.  well, i found out it's because the guys can easily whoop off their shirts, or even roll them up..... but the women have to totally disrobe, and bare themselves to the world.

another advantage for the pee standing up crowd.

i'm already thinking about getting donuts for the radiology team for my last day. did you know a donut shop opens at six am??? that's crazy!  i know if i ran a donut place, i'd open late, and let in the bar crowd.  of course, i'm the one that's always wanting night libraries, too...

nap soon.  

4

so....

rain this morning.  garbo was all over it.  she said it would stop, and start again at noon.  i wondered aloud if it were going to get cooler, and she had an answer for that, as well.  it's great that we're our own weatherpersons now....

sassy came in, smiling.  she said she had had a bit more sleep last night, and was able to think straight for the first time in a-while.  then she started a conversation about $100 shoes with garbo, and that left me out of it....

i was let into the radiation room a bit late to-day.  i get a "boost" this week, which is of a different plan than what i had been getting.  because of that, they had to program the computer, then get an ok by the doctor.  i didn't mind.  i was still a bit groggy from last night's ativan, and i needed a good rest.

i want to believe that this last week will mean that i'm in remission.  there are some days i'm very certain..... but, of course there is a fear in me that something will go wrong.  what if my body rebels like my heart always does?

there's been a lot of rain to-day....but now the sun is shining, and it's getting warm again....

5

doctor day.

sassy still hasn't slept.  garbo is worried about the rain that's coming.  wise fisherman wishes he could go to kansas city, but can't because of his scheduled radiations.

verbalizing these troubles focuses different minds on the situation.  i wish sometimes that i could share my deepest worry, but it's too heavy for the group.  so, i stick with joint pain and the future uncertain.....

....concerns we can all understand.

time on the slab was quick.  i actually asked the technician the questions i was going to ask the doctor.  she said on my last day, the doctor would see me, then schedule for a follow-up three weeks (or so) later.

i was glad i asked her, because when lex luthor talked to me, he was abrupt, and more focused on apologizing over his lateness than looking into my eyes.

(it ends up he went downstairs to get caffeine, and found himself in the middle of an oncology committee coffee break.  they all swarmed him, he said.  i said at least he was well liked.  he smiled craftily, and the nurse nodded her head.  good point, jamison.)

the nurse was there because he wanted to see my affected area.  he said it looked good in an understated way.  the nurse was a bit more excited, saying it looked wonderful.

lex said that, on paper, it looked like this was my last day.  but in the notes it said "boost" so he was sure there was a different focus going on for the last week.  from what i understand from the other doctor, this means that the beam is going to be even smaller, and more concentrated on the last little part of my misery.

so, there's that.

i went home, and was talking to the 13 year old about all of this, in very general terms.  his eyes lighted up, and he asked "does this mean you're cured of cancer?" in that excited, hopeful way that the young have....

it's hard to take away that first thrill of hopefulness.  i gently said that there were more tests to take, and things to watch, but i was almost sure that i would get good news.

he took it well.

the hardest part is to take my children, and the close one i love through this shit.  i totally get how some people never say anything about their cancer.... i wish i could have hidden all this away.

no one needs this.

6

the waiting room has become a happening place.  sassy and garbo talked about their legs, and were very interested in my joint pain vitamin idea.  new older couple thought that no one could be positive, 100 percent of the time.  ("we all handle things differently, and a bit of up and down mood changes things up.... makes it genuine.")

and radiation was smooth, and easy.

i'll be asking the doctor to-morrow if i will see her the last tuesday i'm at radiation.  i'll ask her if they will just call me about the pet scan appointment, and who i will share those results with.  i'll shake her hand, and say thank you for helping in my recovery.

i'll be positive 20 percent of the time.  that's a good enough ratio for her.  :)

nap!!!!

7

before going in to treatment, i got into a discussion with garbo and sassy woman about hair.  garbo took off her wig, and showed us how thin her hair was on the top.  i told her about biotin.  sassy said the reason why she wasn't growing hair was because she kept covering it up with a wig.  the wig was rubbing all the new hairs off.  the wig made her look old.

i only said that she may be more comfortable without the wig during radiation.... or quick trips to walmart.

garbo was amazed by our openness.  sort of shocked that she looked old.  held her wig to her like a security blanket.

i won't be surprised if she decided to come in without the wig... but i swear it seemed like we were staging an intervention.  why was it so important to us?

grow.  be open.  be brave.  get back to normal as soon as you can.

live.

i'm very discouraged inside.  i don't want to continue doing treatments.  i don't want to continue playing watchdog over all these symptoms.

but, for one moment, i caught garbo's amazement, and was happy to tell her that the real her was beautiful.

may all that go through silent fights find sweet resolutions.


soon.....

i was all right, for a while

i've been wanting to cry all day.  i've been a disappointment to everyone, and i feel like i'm never going to get better.

i miss the swishing of hair against my face.... i miss smelling nice  (i still think that i have this medicine smell about me, even though no one agrees with me) ... i wish i were young again, and not awkwardly shuffling around with this joint pain....

i'm a mess.

but, i'm good for one thing.  experience.  someone in the cancer facebook group i'm in is about to go down the road i am going through right now..... to-night, she asked me about radiation.  i was glad to answer her question....

i had a pet at the end of my chemo.  the 10 cm mass had turned into a 3 cm pebble, but it was still there, under my arm.  the oncologist told me that it would probably only take 3 weeks of radiation to get rid of the rest of the cancer.  the radiologist wanted to do 4 weeks, so here i am, three weeks into it, hoping for the best.  
i will get another pet scan after my radiation, to see where i'm at.  the radiologist is extremely confident that the mass will be gone.  so, there's good news.  :)
radiation is not as hard, and you're already feeling better after the chemo.  soon, more and more of your hair starts growing back.  gradually, the rchop drugs loosen their iron fist hold.  you start to breathe easier.  just make sure you get in a nap every day.... your body is working hard to heal itself from the radiation, and you want to give it all the help you can give.  :)

it's amazing how much lighter you can feel when you help someone... especially when you know how heavy their load is.

and, who knows, maybe i'll be useful again.

one day....

8

busy day.

i went to radiation a bit disoriented.  i had just had a sit-down with someone, and was still massively tense.  luckily cheerful woman, cautious new wig lady, and machinist were there.  i went in, and kept it light hearted .... consequently it ended very quickly.

then, after school and a nap, it was time to see the eye doctor.

they dilated my eyes, and gave me a vision test.  i got the most thorough exam that i've ever had.  i asked about my father's cataracts, and was told that cataracts in your sixties was to be expected.  what i need to watch our for is retina tears.  if i have too many floaters in the eyes, a sudden drop in vision, or what looks like a curtain over me, then i was to get to the eye doctor immediately.

he also said my dry eyes were worse.  in fact, he winced as he looked at them.

i'm to try eye ointment, as well as the drops they gave me.

seriously, i'm too tired to try anymore.  i don't want to get better.  i know that part of it is because it's taking so long to get well.  also, it's extremely rough at home.  i'm trying to keep some want to live....but i'm not feeling it right now.

writing this helps.  if i could cry for an hour, that would help.  (if i had the energy, i would.)

eye doctor wants to see me in three months.  oncologist wants to see me in three weeks.  radiologist wants to see me every monday through friday.

i don't want to see anything anymore

9

the waiting room was empty when i got there.  good luck, rhoda.  i hope you get the "all clear" sign soon.

i changed, and waited.  soon, an older gentleman came in.  i was shy.... all i could say was "good morning."  cool lady (who was used to coming in the afternoon, because her husband worked nights) strolled in, with a smile, and a happy greeting.  she changed, sat down, and extracted the story from the gentleman.  he was a machinist, and was hoping to get his appointment time changed to early morning.... because by 11 am, he knew he was going to be covered in oil.

he was pleading his case while i was called in.

it was hard to position me to-day.  i have lost another pound, but i would think that wouldn't make for such a change.  i still don't mind waiting.  i'm glad to be coming in early, so that it doesn't matter.

no red skin yet.  still have aches, and twinges.... but the skin is holding up good, thank goodness.

i was too awake last night, and slept poorly.  it wasn't because of trouble, or stress.  i was just too wired, i guess.  i know to sleep means to heal.... i have to work on letting go of the day more.

one day i'll learn to relax, and let life be.

10

didn't get much sleep last night.  something's going on at home that's cataclysmic, but i have no control over it.

i'll concentrate on this fight for survival.

went in early.  it was thoda's last day.  i wished her well.... she was surprised that i was getting a pet scan after all of this.  she said that she didn't even know what was next for her.... she lamented the fact that a pet scan can't tell you if you are entirely free from cancer, because it can't measure the little bits inside of you.  another person (who sounded like greta garbo) nodded, and said it was very hard for people with breast cancer.... you think when they remove the lymph nodes that you are free and clear... and then you are not.

they had to reboot the computer again this time.  i was on the board for some time, but it gave me a chance to snooze... and think... and imagine.... so i was fine.

the doctor looked at my "affected area."  she said i lucked out.  if i had come six weeks earlier, i would be in a world of hurt because of the heat, and dry weather.  she said that she told her summer patients to pre-cool the car before they went in, because they were literally cooking themselves.

two more weeks.  in fact, yesterday's due date was the date of my last radiation.  i smiled each time i said it to a patron.

i'm under a lot of stress from home.  i have to stop thinking so hard.... the energy it takes to heal is being taken away.  i finally wrote a couple of poems, but they are markedly different from what i'm used to writing.
everything about me is changing.  i just want to be that young, impulsive, silly girl that had fun .... who was light-hearted, and hopeful.... not under all this doom all the time.

it sucks to be me.

whispers around the corner

right now, i have a sort of a crewcut, with gray and dark colours in my hair.  it's starting to look like i cut my hair like this on purpose.

and yet... i hear whispers around the corner about me.

"man, she really chopped all her hair off, didn't she?"  (amazement)

"what did she do to her hair?"  (disdain)

"wasn't that the pretty one with the nice hair?"

they look at my nametag, with an old picture of me, and ask "is that your daughter?"

people with mental health issues, who need explanations said to them slow, and loud, are taken to back rooms, and study areas..... they get talked to over and over until they understand.

some people are anxious around me.  all people want to accept me.  but most want explanations.

sometimes, i can't find words to explain.

all i can do is shrug my shoulders, and talk about how nice their shirt looks.

the wise ones understand.

but there are always questions.

11

my little laptops cracking this morning.  must be because of the nachos i spilled on it last night.  ah, a southern woman's problem....

rhoda lady was there to-day.  i asked her if she felt pain bone deep from the radiation.  she said she did.  i told her that others have told me that they didn't feel pain...that they just were tired.  she supposed that perhaps they didn't have chemo, then radiation.  i nodded my head.

(i also think that there's a sort of pain amnesia going on.  you remember the aches and such from chemo, but radiation is this downhill slope, and it becomes a picnic in the mind.  just a theory.)

the technician gave me a playful bit of a hard time because i lost a sticker on my left side.  he then put two different stickers on, because he knew one would fall off.  we talked about how autumn was starting to-morrow, and i was on my way.

not much more to add.  i haven't been writing.  i didn't sleep at all last night.  i keep missing that window of opportunity.  i miss my oldest, and i feel ancient.

so... in other words... business as usual.  :)

12

12 means i have twelve treatments left

to-day, i was the poky little puppy, and didn't leave the house until i absolutely had to.  then, i told great wig woman that i didn't wanna be there.... we both giggled.  she said the weekend was ahead, which made be a bit happier.  two days of not having to chases away the i don't wanna-s pretty well.

i was in and out of the board in a flash.

i can feel a bit of weariness on my right side.  no burns.  twinges.  i'm still able to carry things, and pick things up.  still being careful, though.

to-day is talk like a pirate day.  i feel like a pirate...stealing back my inheritance from a crafty outsider.  day by day, the sun looks larger on the horizon.

here's hoping....

13

i smile inwardly as i type the title to this blog.  13.   of course.

i wake up easily.  surfing a bit through the net before i get ready, i hear thunder.  then the downpour of rain starts.

dummy me with the no umbrella runs to the car, overcoat over my head.  i slide through shiny wet streets to the hospital, parking as close as i can to the buildings.  by then, the deluge has softened to splatterings of moisture.

still, i wished i could walk between the drops.....

i went into the radiation room, and change into my robe.  "it's still raining!" i call out to the fascinating wig lady (who's rhoda to-day).  she giggles hoarsely, and goes back to her book.  (i find out later that it's called the professor and the madman.  "who's winning?" i ask.  "wellll.....they're both friends now."  coolness!)

i should be writing more.  i should have brought a notebook to the waiting room....but the rain limited me, and forced me out the door without making allowances for my creative mind.  i'll have to see about tapping into my muse later.  there's a an uneasiness to me right now.... a bit of something inside that needs to come outside....even if it's just to play in the rain.

time on the board is longer to-day.  for some reason, they have to reboot the thing that guides the laser, and it ends up taking 2-3 minutes, technician time (five to six minutes jamison time).  i'm so relaxed that i end up snoozing.  the nurse is very apologetic, but i told her i needed the nap.

(i like this nurse.  she has the habit of saying "i'm in the room...." as she comes in, so she won't surprise me.  there's something reassuring in that.  "i'm in the room... it's almost over...."  i need to find some way of using this phrase in my work.)

not much else to-day.  overall, i'm not as tired as i was, but it may be because i slept well last night.  i can't wait until i can start walking....or biking..... or stretching....anything to get the kinks out of me.  sometimes, i feel extremely tense, as if i could curl up into a hard ball, and never get straight again.

soon, i'll be able to set myself free.

14 ?

ok, here's the deal.

i got told definitely that i was only going through four weeks of treatment.  so... i'm not sure what that means, countdown-wise.  let's go with one week down, three to go, shall we?

i woke up after a fitful night's sleep.  i knew it was doctor day... and i'm not very good with doctors.  i was dressed and ready early, and got to the hospital right on time.

i got to talk to cool wig lady for a bit.... mostly about lack of sleep.  she wore blonde tresses to-day.... very wavy, and feminine.  i didn't get to ask about her husband... next time.

another lady was waiting.... we talked a bit.  she was older than me, and had had breast cancer.  she had been a pediatric nurse, and head of a department.  she was there because she wanted to go to a dementia seminar, and they allowed her to reschedule her radiation.  she was surprised that they didn't remove my lymph nodes (they took twenty out of her). i asked her how the radiation was affecting her.  she pulled down her gown, and showed me.... it looked like a tender redness that would go away with a cool bath.  i was glad to see a sample of something i may experience.  this lady was smart, and optimistic.  i hope i see her again.

another lady came, and sat down after her.  she was another older lady with breast cancer.  she was just as open about her life... but i didn't have time to find out more than the fact that she had six months chemo, and that radiation was a very easy road for her.  again, it was good to talk to someone about things other people take for granted.... like sleep  :)

treatment was easy again.  (i didn't get a chance to snooze. darn.)

the doctor's nurse weighed me in before the doctor came in.  my weight was the same.  i feigned disappointment, and was told quite pointedly that it was best that i didn't lose weight now.  i know i know... but it's fun when weight sneaks off me like gremlins in the night.  oh well....

i talked to the lady doctor soon after.  she showed me my chart... the various pictures of the tumour, and the scans they made of it.  she said that if they took it out, then they would have taken out a lot of me with it... including a breast.  it was best to shrink it down.

then she said i had three weeks.... and the last week would be the one where they pinpointed right on the spot of contention.

three weeks?

really?

i was so sure i'd hear four more weeks.... but she acted like she didn't even consider it.  no "worst cast scenario."  nothing.

in a way, it feels like 'time off for good behavour.'  but, in a big way, i'm skeptical.  after all, i was told it was just a virus.  i was told i may only need three chemos.  i was told that chemo would do it.....

and now.... three weeks.

i know.  i'm so dramatic.  such a victim.  when will i learn to take things at face value?

when the face doesn't change.....

when the face doesn't turn away, and hide from the light....

when i can see the path again... and run straight home.

when i can live again.

sigh

20

talked a bit more to the lady ahead of me in the radiation line.  it ends up she has to have the earliest time...because she's the one who does it twice a day.  she has a type of cancer that grew when she was on chemo.  more aggressive techniques are needed.

she's been through a touch road.

i talked a bit to her, and more to the gentleman who was with her.  he was at the hospital to get a procedure done, but he wanted to be with her before he went in.  he called her his "hunting buddy, his riding companion, and his best friend"  and said that he would always make sure that the battle against cancer was, as he said, "not just her, but us."

he was strong, and good, and she was, too.  i hope they get to walk on firmer ground soon.

it's good to talk to people who're going through the same things you are.  i felt stronger, in a way, after the conversation.  more focused.  less pessimistic.  it helps me to think of others, and how strong they are.

it helps to believe i can be strong, too.

my treatment was easy to-day.  i got the feeling i was in a better position, to-day.... there wasn't as much scooting around, and the camera didn't seem to take as many pictures.  my upper body aches, but i don't know if it's because of the treatment, or the arm exercises i was doing yesterday.

i need to ask if i should wait on exercise when i go in to-morrow to see the dreaded doc.

i need to stop thinking of these docs as dreaded.

i need a nap.

:-)

21

pretty routine.

i saw the early woman to-day.... the one who normally has the wigs.  she was rhoda again...subdued, and reading.  i bade her good morning, and read my magazine.

my eczema was driving me nuts around my neck.... and my eyes were tearing up a bit, but i could feel the allergy medicine working while i was on the table.  the technician, and the nurse talked about a stomach bug that was making the rounds, and were, for the most part, very soothing.  i almost fell asleep on the table, but i attribute that more to the lack of sleep the night before than the company.

it was sprinkling again this morning.  how many times have i missed the rain, because of waking up so late?  it's very comforting to drive, slow motion in the rain, all the way back home.

don't know why i'm a bit sad to-day.  weather? fatigue? radiation?

all of the above

22

early morning sprinkles.  early morning rain.  things are the same, but different little by little each day.

i'm working with a published author, who's still getting used to our busy library.  i asked him how he's doing the other day.  he said he felt like a bicycle tire on a semi truck.  i totally understood what he was talking about.  it was within me to talk about writing with him, since i'm a poet, but i've held myself back so far.  don't want to overwhelm the guy.

went in for radiation to-day, and it was quick and easy.  there was a lady waiting ahead of me (it may or may not have been the long haired lady of yesterday, but i couldn't tell, because she had a rhoda scarf on to-day.)  she had her legs crossed, and was knee deep in a book, so i greeted her, and let her be. ( you don't have to talk to everyone, jamison :) )

my session on the plank was quick...especially since they marked me up to high heaven yesterday.  so, that was good.

don't have too much more to write about things.  i didn't sleep well last night because i had coffee too late in the day.  my left leg is better, and is better still when i don't fold my legs to-gether.  school is going good... better now that i wake this early.  perhaps a poem will slip out to-day, but i won't force it.  this weekend brings a trip to the museum, and work on sunday.

i just wish i wasn't on edge so much.  more sleep will help.... hopefully i can catch up on it, soon....

23

a light sprinkling of rain fell as i went in late to-day.  fall's coming....

i had to wait longer this time, because the machine was moved around, and the doctor had to ok the new position.  note to self: bring a notebook.  (dur... you would think a poet always does.)

much ado was made of the person ahead of me.  it ended up being because she had a long haired wig that made her look very different.  i had to look again, myself, because it didn't look like a wig at all.  it made me want to dig out one of my wigs.... but unfortunately all mine are on the short side.  i still may try one, just to keep my head warm.

while i was waiting in the waiting room, a man rushed in, and sat heavily near me.  he breathed heavily, and looked exhausted.  now, usually i'm the greeter, and the asker of questions....but it was hard for me this time.  it wasn't because he was black.  it wasn't because he was older.  (or was he?)  it may have been because he was weary to the bone..... i don't know.  

finally, i decided to accept him into my life... which is what you do when you greet someone.

"you would think the cooler weather would help."

"yeah.... and now it's sprinkling out!"

thank you, weather, for always being universally understood.

ended up this was his radiation day.... and, soon after, in muskogee,  his chemo day.  i can't imagine going through both at once!  no wonder he looked shrunk in his skin. 

talk lessens the pain and makes one stronger.... both our voices got bolder as we continued the conversation.  he remembered hearing about a lady who came in to do radiation....twice a day!  (this reminds me of the phrase "i cried because i had no shoes, until i saw a man who had no feet")

in the radiation room, it was harder to position me.  i was slid from one side of the board to the other.  at the end, the nurse drew two more lines on the right side of me, to help for next time.  that makes two x marks on either side of me, one on my right breast, and two under my right breast, all protected by clear stickers.  i'm cool with it.  they don't itch, and i can't feel them.  it's sort of interesting looking like a road map.

my arms are beginning to be sore from being overhead at a stressful time.  i took a hard nap yesterday, and am still a bit tired to-day.  my fingers were tingly last night.  also, i felt twinges under my arm again to-day.  but, that's all in the mind.

i need to stop being bitter.  i need to stop being the special snowflake that needs to hear things from people, to validate my pain.  i need to look out to other people, and lessen their pain.

i need to live .... and living for others is a beautiful, purposeful start.

get out of your room, jamison

24

i have three clear stickers on me, protecting three x marks on my body.  one on either side of me, and one on my right breast.  to-day, they took a longer time centerizing me.  they also moved the table slightly away from the camera.  no bumps this time.... 

i'm to see the doctors every wednesday.  this time, it was with the radiologist's assistant doctor.  he looked like a cross between john malkovich, and lex luthor.  i asked him if it were possible to feel the radiation on the first day.  he went into this long story where he thought he could sense a radiation beam on him, and even felt the hairs on his arm stand on end.  it ended up that the machine wasn't even on, and it was all in my mind.

i would have rather have him say that the reason my arm was sore was because of the position they put me in to get the radiation.  (it's hard to lie down, and have your arms over your head for a long period of time.)  that the fatigue, and pressure of waking up in the morning could make one very sensitive.  

but, then again, i'm a people person.  i expect too much.

i lost nine pounds since the last time i was weighed in. (five weeks ago)  i won't concentrate on that.  the more i think of numbers, the more i'll think "i'm losing weight, so it's ok for me to have this massive banana fudge sundae."  

my biggest fear is either oversleeping, or forgetting where i'm supposed to be.  i'm not really good at habits... the only thing i do daily is work.  maybe this will help me get more organized.... more ready to face the day in the morning.  who knows, it may be good for me.

the first radiation

7:30.  on the dot.  with escort.

immediately assumed the role.  went in, took off my blouse, and bra, and put on the backward gown.  quickly got called back in.  (no people were in the waiting room.)

the cool technician man, and a nice nurse woman were waiting.  i was immediately put on the board, and under the ray.

(this is almost exactly what the setup looked like:  http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page3 )

i laid down on the board, and waited for ....something.  anything to show that the process was starting.  i had been told that there would be pictures made, and then after that the procedure would start...but i didn't know which one was the camera, and which one was the ray.

it reminded me of the movie "i want to live."  it was a revolutionary movie against execution, with susan hayward in a starring role. at the end of the movie (spoiler alert)  she is waiting for the gas to drop, and the start of the execution.  as i remember, she was told to wait until she heard the pellet drop, then count to ten.

unfortunately, there were a couple of sounds that sounded like pellets dropping... so she ended up counting down two different times.

a very intense situation... her, alone with the machine that held her fate.... aimlessly counting down to her death.

i wanted to live, so i closed my eyes, and stayed as still as i could.... waiting for things to be over.

it was an intense ten minutes.

at one point, the camera block scraped against the board where my arms were.... i was praised for not moving, but they knew i was surprised because my "eyes got real big!"

it will be easier tomorrow, surely.  and i'm to see the radiologist (or, hopefully her assistant) every other wednesday.

i don't feel any different.... but i'm not really supposed to.... until the third or fourth week.  by then, i'll be too exhausted to care, right?

24 more to go.

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?

unknown fears, inner pain

yesterday, i would have had a chemo.....but i'm done with them  (yay!)

but now, my right shoulder is aching inside, and under my arm.  i know there isn't enough there to hurt so bad.... it's gotta be the worry, and the apprehension from reading about radiation. 

the other day, i had a nameless fear.  it kept me from moving, and i called out for.... assistance?  i don't kow....i don't even know what would have cured it.  

i have to solve these problems myself.  i have to stop being such a pussy about things.  it's almost over, for fuck's sake.....i should be able to grow up, and learn to cure myself.

it's supposed to be easier.....

glow little glow worm

i have to do the radiation.

you see, i have a tumour in me, and it's still there.

once, it was 10.5 cm monstrosity, with a glow level of 31.  it blazed like the sun, and i couldn't put my arm down fully to save my life.  (and this is all about saving my life)

now, it's a 2.7 cm shriveling mass, that's a trembling glow level of 3.  it's withered, and wavered, but it's still there, and the radiologist wants a crack at it.

oncologist says that 15 treatments in three weeks time should do it.  will do it.  must do it.  guaranteed will do it.

i just wish it all were over.

so, i'm going to take some time for me.... go punch a few puppies, and forget myself for a-while.  then, i'm going to go back and start this radiation thing..... and work, too.  (sure, why not?  in for a penny, in for a pound.)

i'm going to allow myself time to research the radiation route 'til the end of this week..... then i'm going to stop thinking about anything for two weeks.

this pause should allow me to catch my breath, and get used to the new me.  the scarved, eyebrow drawn in, glasses me who's ready for a fight.

belt and suspenders.  let's do this.

sigh

pet scan

had the pet scan.  i should write in detail things....but i'm not really up for it.  these are just things to remember.

if you have chemo soon before your pet scan, bring someone with you.  ask for the sedative.  pamper yourself.

eat as late as possible.  six hours to the minute if you have to.

be realistic.

i was tired as hell, more scared than i should have been, and the claustrophobia level was more intense this time around.

i'm trying not to think about anything regarding the results.  i don't believe in "jinxing" the outcome....i just think it's better for me emotionally if i don't get my hopes up.

i want to be cured so badly.  i want normal again.  i want my energy back.  i want my hair back.

i choose life..... if it will choose me.

hope.

you can't hide your watery eyes

i've got watery eyes.  tmi, i know.  but it seems worse now..... and my oncologist doesn't want to give me steroid eye drops because shes afraid i will get an infection.  i totally get that....so i'm looking at homeopathic drops.  i know similasan has a great reputation (i've used it on the kids for pink eye to wonderful results) and they are cheap enough to try.

it's interesting reading the different bulletin boards online....the lymphoma ones are a great help.  when i read what people talked about in the past, i find stuff like:

--- any speck of dust will mess with you if you have little to no eyelashes, or eyebrows.

--- sometimes you have watery eyes because you aren't letting yourself cry.

--- are you drinking enough water?  you have to flush out all those chemicals.....it's better to piss it all out than cry later.

---just to complicate things--- sometimes watery eye can mean that a person actually has dry eyes....that their eyes don't produce lubricating tears, only cleansing ones.

so much gold from people who have walked down the path you have.  i love the internet, and the bold people who ask questions.

i'll go to walgreens to-night.  i actually love the place.  when i was young, i used to go there every saturday with my father....the mall we went to had a diner attached to the drug store.  i got a coke, my daddy got a coffee.... he read quietly from his paper, and i ..... i don't remember what i did, but i wasn't bored.  sometimes it's wonderful just sitting, and breathing, and looking around.....safe with someone you know will protect you no matter what.

letting myself cry now......

 

chemo 6: and then there were none

arrived at the oncologist right on time.  my eyes are red, and mad about being awake.  (i'm getting glasses... i'm sure that will help.)

i get a pet scan on monday.  my oncologist should call at the end of the week with the results.  then, i'm probably going to talk to a radiologist.  then, i'll see the oncologist every three months for a certain point....then every four months.... and in five years, if i keep in the clear, i'll be considered cancer free.

my oncologist is so optimistic she could bust wide open in smiles, and encouraging words.  i'm more cautious.  it'll be ok..... but who knows what's on the road ahead.

she checked around my clavicle.....and my neck....and under my arms.  she told me to check there myself.... sort of like a self exam.  you best believe i'm going to come in if there's the slightest suggestion of a lump.  and so my watch begins.....

she gave me some ideas about primary doctors.  i was thinking about staying with my original doctor.... working on the idea that i could challenge him more now that i know he misdiagnosed me, but that sounds like too toxic of a relationship to have with a doctor.  i have a small list of doctors to check on....and i had forgotten about my former cool ass british doctor who, last time i heard, moved back to tulsa.  i should see where he is, too.....

they put the iv in my hand this time, which was initially more painful, but it's easier to type, and deal with.  my eyes have calmed down a bit, but the edges of the lids are still sticky.  i'll be very glad to get over this medication, and get my looks back.  

i miss me.

i was so scared coming in, and now i'm just rocking through the drugs as if nothing is happening.  i have so many conflicting feelings.... am i well?  am i going to ever get back to normal?  will i get my hair back?  and what about naomi?

i'm glad for the pain.  i'm glad for the drugs.  i'm glad for the bald.  i'm glad for the scans.  with the sun, there can be rain.  i can't explain.  i live for the pain..... because it makes me alive again.

be well.  please.

sit rep

worried about monday.  yes, i know it's the last chemo.  i know i should be celebrating... and perhaps i will when i get to ring the bell.....

but if the cancer isn't gone, then it's on to radiation.  and if the cancer isn't gone, it may mean stem cell transplant.... and then.....?

i swear i feel like the cancer is gone now.  but i don't trust my feelings.  i don't want to get my hopes up.

also, my eyes are really watery.  and, my face is very dry.  i can't wait to stop chemo, and try to get my skin back to normal.  at least that's something i'm good at, and can succeed at.

i just want all this to be over.

i've been patient with myself.  i've let myself cry more.  but, i haven't let myself panic.  for some odd reason, i was rubbing my scalp the other day, then i started to really cry, because i kept thinking "it's going to take forever for my hair to be long again... it's going to take forever before i look normal.... i'm never going to have my hair the way it was before.... why the hell did i let them do this to me......"

and i stopped myself right there, and thought of something else.  because i knew i had to go through chemo, to live.  and whatever it did to me is only going to help me later.... help me learn patience... help me learn humility..... help me learn to get help from other people....

....help me to learn how to help others.... which i always want to do.

can't wait for monday.  and tuesday.  and wednesday......

and the rest of my life.....

small update

shoulder joints hurt.  it was very rough to-day.  pain.  hopefully i'll sleep deeper to-night.

have pet scan set for monday, 14 july.

this weekend, i'm alone.  i think i can handle it.  it's just hard to get up sometimes.  hopefully there won't be any problems.

i'm trying not to feel anything.  pain.  pleasure.  hope.  sadness.  comfortably numb?  i don't know.... i just want to be able to zone out from the world.

i just wish i could live life by making money, but not seeing anyone.  guess i can't do that without a lottery.....