doctor, my eyes

so, my ophthalmologist called.  very informally.  left a quick message.

i smiled faintly, and called him back.  him, i can deal with.  he's young, appreciative of humour, and someone who wants me to ask questions.  good man.

so, i have irregular corneas.  (dude, i'm irregular all over.)

he wants one of his partners to look at me, to make sure about the irregularity.

it could be that i have dry eyes, which would make the cornea appear irregular.

it could be that my cornea is changing, which would mean i need to be monitored each year for continual change, since the new toric lenses are helping me have great vision.

or it could mean that my cornea is changing significantly..... and that i will need surgery, and a cornea transplant in the future.

dr city (named by google voice) is hopeful.  i'm not going blind.  i'm not having wild difficulty.  i'm just needing to be looked over, and kept track of.....

....like i am with everything else.

thing is, my eye doctor doesn't think the chemo did anything to my eyes.  this is just a natural progression i get for being old.

so.... it's good that i went back to good old dr. city,  instead of staying with the optometrist chain that gives me a new doctor at each visit, and perplexed looks every time i come in.

a blessing in disguise, in a way.

oh well.....

new doctor, old feelings

i have a new oncologist.

i should have expected this when everyone at work was talking about having to switch over to another hospital system.  i just thought that you didn't change oncologists.   who would stop care so specific and careful over insurance?

so, i went in to see the new oncologist.

he seemed ok.  he wore a suit, and was ...um... there.  then he asked for a pet scan.  i hadn't had one in a-while, and it made sense that he wanted to get the full picture.

well, there was a light up over the left groin.  he wants to do another pet scan in march.  ok.

thing is, he isn't very personable.  he tends to spock things, and not in a good way.  matter of fact, and a cold undertone, he is.  (i'm upset and weary when i think of him.  that may be why it's been so hard to write about him.)

so, when he told me that i had an irregularity (a 9 mm light up), i cried.  and tried to control myself.

and he....just looked at me.  and said nothing.

just like enigma.

so, i've been on watch and wait, basically.  (albeit unofficially. they didn't call it "watch and wait" but it's the same idea.)

and.... now there's this lump.

a day ago, my breast was feeling tender.  now, there's this lump near my underarm, but not under it.  i called, and left a message for the nurse.

now, when i called and left a message with the old oncologist, she took until the afternoon to call me back.  well, i don't know if it's because of the holidays, or what, but i got a call very quickly.  an australian nurse asked me what was going on, and tried to get all the details.

she said she would tell the new oncologist about what was going on, and that they would see me on the 14th, for lab work and exam.  that was awesome news to me, because he hadn't labbed me at all since the first time he saw me.

my old oncologist labbed me every time she saw me.  my old oncologist gave me two antibiotics for every infection i had.  my old oncologist hugged me, and really let me know that she was part of my fight, not an observer of it.

i don't want to see the new oncologist, but maybe i can.... at the very least.......i can help him help me.

one hopes.....

pet scan results

sorry it's been so long since my last entry.  let's bring you up to speed, ok?

on tuesday, july 7, i had a pet scan, this time at st francis' cancer center.  (my insurance changed.)  it was very different from hillcrest.  (as it is when you move from a hospital set in the seventies, into a a new place with state-of-the-art technology.)

i went in (after paying $100 more than i thought i was going to pay), and was told to go to a room. it had a comfy chair, and a big screen tv... all for me :)  they gave me a bottled water, and injected the solution.   i rested, watching everything from an old "highway patrol" episode to earring ads on the shopping network.

soon, i was in the pet scan room.  instead of a long, claustrophobic tunnel, it was a friendly, cancer-seeking donut that i floated through in about twenty minutes.  after that, i walked out the door, looking out at the rain...graham crackers in hand, uncertainty in heart.

on thursday, july 23, i went to my home cancer center.  my oncologist was on maternity leave, so i was to see the nurse-practitioner on duty.  i came in, after a quick blood scan.  a nurse took my vitals, then told me to circle what symptoms i had on a piece of paper full of creative complaints.  the nurse told me who i was about to see was big on symptoms.  i haloed a few items, and waited.

no one looked at that piece of paper through the entire visit.

the nurse practitioner came in.  she cut right to the chase, which made me very grateful.  i had a 1.5 cm thing that lit up underneath my arm.  she used many complicated words... terms that nurses used to explain things to doctors.  i had to ask what every other word meant.  i felt stupid, awkward, and very sad. it was hard to hide my fear, but i tried my best.

i was never brave.

i was told that i needed to check my affected area diligently.  i was on "watch and wait", a term i always read with trepidation every time i saw it in the cancer books.  watch for whatever was out of the ordinary, and report it as soon as possible.  if nothing happened, then i would be seen in three months, by my regular oncologist.

be ever diligent.

i left the office in shaky tears.  the person i was with didn't know what to say... it was good that nothing was said.  empty words don't do much at times like that.  

i went home, and tried to forget.

on the 28, early in the morning, the nurse practitioner left me a voicemail message.  she told me she wanted to talk to me about my pet scan results.  i called her back an hour later.  my butt called her two hours later.  i called her again to apologize over my butt.

no answer, all day.

i got no sleep, thinking "if she's calling, but not calling back, it isn't important.  or, it is, but she's way too busy to call. or....or... or...."

the next day, i checked my charts online.  there wasn't anything in the radiology section past the last pet scan.  no clue.

at 2:34 pm, she finally called me back.  she was full of apologies.  she was busy yesterday.  to-day, she had child care issues.  she was off balanced a bit.... and i was immediately at ease.

no worries. just tell me, i said silently to myself.

she did.

i was told to forget everything i had heard before  she had read the wrong pet scan, and was telling me the information that lead to my lumpectomy, instead of the results of the scan taken after the operation.

i was cautiously optimistic.

she told me the good news. i didn't have any light ups.  there were swollen areas right where they were supposed to be, in the area where i had my operation.  there was a new bit of swelling at the top of my legs, but it wasn't worth any worry.

(i felt foolish.  the results she told me should have sounded familiar, but because of the way she communicated, and the pessimistic view i had about the whole thing, i took it as new news.  and, to tell you the truth, i'm still acting as if i'm under that "watch and wait" umbrella.  maybe that's good.  maybe i need to live in caution.) 

i still will talk to my oncologist in three months. even with her apologies, the nurse practitioner used words that were long, and hard to understand.  she would not say that there wasn't any cancer, only that there weren't any light ups.  she had said before that if the cancer wasn't seen in me for two years, that it was a fine sign that it wouldn't return.

i need to check the dates (i really need to write them all down on one post, anyway) but i think i'm close to that mark.

and then i'll be healed.... inside.......

pardon me if i'm still healing, emotion wise.

i have to learn trust again

dipping a toe in

i guess it's time for a sit rep, huh?  been long enough.

in a week, i'm supposed to have a pet scan, with a new hospital.  (gotta love insurance.)  when they were giving me an option for appointments, the lady said "we could schedule you to-morrow, but i'm sure you're not ready for it."

not physically.  mentally, i was ready three months ago.

anyway, it will be good to put a period at the end of this sentence.  yes, i understand that the surgeon "knows" that he got all the suspicious stuff out with the lumpectomy.  me, i gotta see proof..... and hope that nothing new has cropped up.

it's the optimist in me.

i've had a dilly of a time with my eyes.  they've been getting progressively drier even before chemo, but now.... worse.  the edges of my eyelids are starting to stick to-gether in the morning.  my vision is out of focus at the beginning of the day... not good for this 9-1 working girl.  luckily, i've found some scrub for the eyelids, and have been putting on the protopic very sparingly on my face.  oh, and i got a cool mist humidifier.  did you know that a window ac dries out the air in the room?  i don't need that, that's for sure.

(pardon me.  i've just watched a few episodes of m*a*s*h*, so i sound a bit...different in my writing voice.  about time that i've gotten better, though.  i need to straighten myself up, and fly right, like i know i can.  no more babying myself.  yeah, let's see how long that'll last.....)

i long for a time where i don't talk about my ailments first, then my accomplishments.  i don't bombard my sickness with everyone, but i'm sure the ones close to me are a bit tired of hearing about my illnesses.  my mother used to repeat herself over and over again.... i fear i'm doing the same.

i want to go back to the fearless me again.  where did she go?

so, i'm drinking more water.  got more fruit.  hoping to get more veggies, or at least veggy juice.  almost said yes to a full time job... now i need to get creative, and make my part time job count, but not rule my life.  if i keep saying i can't do a full time job, then i need to stop slacking with all the free time i say i need... and really do something in life.

i need to stop lamenting the past..... and make the future brighter.  for her.  for them. for him.  maybe one day... for me.


time starts now...... 

  

bumpy roads

i cried in front of my son just now.

i've had trouble with my eyes again.  they are watery, and tired, and i can't keep contacts in them.  they are sensitive to light, and crusty in the morning.   i want to say it's allergies, but i'm not sure.

i know...i know... i said i would go to a doctor.  i will to-morrow, i promise.

i was talking to my son about plays, and his life, and things..... and i told him i got overwhelmed.  i told him that i will stop, in mid-sentence, and search for words.  he told me everyone does it.  i said no, it's different.... i can see the object, and touch it with my mind, but it takes a-while to say the word.  and, when i stop in mid-sentence, people think i'm done talking, and barrel on through with the conversation....

and that's when i cried a little cry.

i said i was stupid, and old.  he listened.  i said going to the doctor would help.  he said it would tremendously.  i told him that he could have said "you aren't stupid.  you aren't tired."

"i could say those things.....but you already know that."

wise man.

i'm tired.  i need to get better sleep.  i worry too much.  will it come back?  are my eyes a symptom?  will my skin ever be 100% clear?

will i ever be normal?

in the world right now, people are worried about finding loved ones in earthquakes.  they search for peace on their streets, and justice for their brothers.  they hope to stop hurting worldwide....

i'm so fucking self centered.  

i'll get over this hump, and be useful again.  the rain will not fall for so long this time.  until then, i will be positive and hopeful for others..... and write out what hell is inside.

it's what i do best.......

oncologist remission visit

i went in to see the oncologist bright and early, and on time.... walking across the parking lot with shaking legs, and downturned face.

i don't know why it's gotten worse every time i see a doctor.  perhaps because i have more time in between to act normal.

i waited in line to pay my co-pay.  across from me in line was this beautiful thin lady, with an infinity scarf floating around her neck.  she had a smooth, bald head that i was instantly envious of.  (my bald head was always wrinkly, as if it were imprinting the brain underneath.)

i told her that her scarf looked lovely.... like beautiful watercolours.  she smiled brightly. she might have smiled more if i said i liked her big ole bald head, but i resisted the urge.  she was carrying a big purse.

co-pay was more this time around, and they asked me to take a form to fill out as i went on with my visit.  yay! homework!

then i was immediately sent over to the lab waiting area.  i was supposed to be at work in three hours... it seemed like i was going to have plenty of time to wait.

soon i was sitting at the little makeshift desk thing, waiting for my blood to be drawn.

a lady across from me sat down, with fear in her eyes.  a nurse asked her questions she wasn't prepared for.

nurse: "do you have a port?"
lady:   "uh....no."
nurse: "are you going to get a port?"
lady:   "uh.....i don't know?"
me:     "would you like some port?'
lady:   "yes."  (giggling)

it helps to make other smile.... especially when your own smile is far away.

soon i was in the doctor's waiting area.... it was too overcast to take many pictures.  i noticed they had a book sale area... i have to remember to bring interesting books in.  very soon, i was escorted back to the doctor area.

the nurse asked if i was all right.  i told her i was ok, but nervous.  she didn't blame me.  she took my weight, and lead me into the examining room.

she checked my blood pressure, and told me i had great numbers. she was trying to bolster me up a bit... it helped.  then, she went down the list of my prescriptions, to whittle them down to things i was taking at the moment.  i told her i was just taking vitamins, zyrtec, and an occasional big ass ibuprofen.  (i love the big ass ibuprofen.  they last a whole day, and really help with the pain i have.)

soon, my dear oncologist came in.  she had an observing doctor with her... someone who wanted to see if she wanted to be in the cancer field.  i didn't mind.  lady was lucky to have the best teacher leading her around.

she asked how i was.  i told her about how the radiologist was concerned about my right arm.  she asked if they had set up an appointment for a scan.  i said no, but showed both arms to her.  she didn't see any difference, and didn't act concerned about it.

(i almost don't want to go back to the radiologist.  i really feel her job is done.  i have plenty of time to cancel my appointment.  i really have to think on this.....)

she checked my spleen...liver... ankles.... lymph nodes in the neck, and underarm.  her touch was strong, and assured.  i was sure that nothing would get past her exam.

she made things right.

i talked to the new doctor, telling her that it was hard coming into the cancer place sometimes.  she said that it was probably the building.  i said yes, as well as the smells, and the sounds.  they both nodded their heads vigorously.  it felt good to be understood.

this time, my oncologist made sure to say that what i was feeling was normal... after all, i had something that was very much like post traumatic stress disorder.

when i had my first cesarean, i was told i had had a major operation.  i pooh poohed it, and tried to walk around like i owned the place.  i paid for it later with severe postpartum depression.  i try my best to belittle the traumas i've felt in life.... never to deal with them until it's too late.

hopefully by writing, and talking, reading and listening i can learn to live again.

i.  just.  don't.  know.

in the midst of our talking, i told my oncologist that i didn't even know if i was in remission.  she said that, to her, i was indeed in remission.  she wanted to give me another pet scan in three months, to be sure.

i haven't been sleeping well lately.  i haven't been eating right, either.  i'm going into the free clinic i have with my insurance wednesday, to make sure my eyes are not infected.  (i wake up in the morning, and my eyes are fused shut.  yeah, i know.  ew.  could it be allergies?  intense dry eye?  infection?  we will see.)

also, i've paid all but one bill having to due with the recent cycle of things (pet scan/lymph node removal).  it's great to have my work help me, with their medical compensation.  it makes it that much easier to face the future, with the various "are you ok?" pet scans to follow.

the less to worry about, the better, i say......

and so it goes.

radiation follow up

well, i thought this was going to be the last radiology visit.....

i went in, right on time.  walked past the receptionist station (the lady who used to be there is now a large young man with orange hair.)  i was asked to sign...something.  (permission for treatment, i think.)

then i waited.

there were new pamphlets at the patient table.  what to eat during cancer treatment.  what your prostate cancer means to you.  a cancer hat catalog.  in the background, i heard the news of the day.  (mostly about the traffic situation.... you can't swing a cat without hitting it against a traffic cone.)

soon, i was called back.  this nurse was different than the other one i encountered.  she didn't react at all to my weight. she asked if i had any scans recently.  i told her about the pet, but she nodded in a way that said "oh, i know about that one. i meant any other ones....." so my explanation trailed off, and i shrugged.  she understood.

(is it any wonder writers have trouble writing dialogue?  we have so many shorthand ways of talking....)

soon, the radiologist burst in.  she was glad to see me healthy, and thriving.  she liked my blouse, and the thin fabric was perfect for spring.  was that a natural curl in my hair? wow.....

after the inspection, she asked how i was.  i had no troubles to report.  she said she had never seen anything like what i had experience before... she believed everything happened for a reason, so even though the lymph nodes didn't have an irregularities, it was good to remove them just in case there was one small cancer cell in there....

she then called me over to the examination table to look at me.  (i had purposely decided to sit on one of the observation chairs, as if to say "i'm not sick.  i don't necessarily need to sit in the sick chair.")

as i went to sit down, i heard a small knock on the door.  she didn't.  i told her, and she praised me for having better ears than she did.

she was soon excusing herself, and running down the hall.

i sat, and looked around.  small room.  scale. dim lights.  beige.  very seventies looking.  the smell of alcohol.  the sound of a dull air conditioner.

sometimes life is a refresher course in memories you never wanted to remember.

the radiologist burst back in.  she said that she knew the patient would have trouble keeping her hands over her head... and was trying to make the treatment shorter for her.... in an undertone i said "it's a hard position to maintain, sometimes." and she said "yes... you would know about that"

she raised my arm, and said that it looked good.  she then pulled both my arms forward, and compared them.

she didn't like what she saw.

she said she wanted to keep an eyeball on my arm.... wanted to see me in six months.  asked me when i was to see the oncologist (next week.) told me to tell her that my arm concerned her, to keep her in the loop.

and... she was gone.

sigh.

so, i walked out of the exam room, with my sheet of paper.  handed it to the new girl at the receptionist desk.  (the one who made long pauses in her phone message to me....telling.....me.....when my next......appointment was.)

"ah, we get to see you back again in six months."

she scanned my face.

"are you not happy about that?"

"well.... it's different."  (resigned, soft voice.)

"ah.  different."

and soon i was out the door.

i'm not too worried about things.  i can't do much about it, anyway.  i just... wish i didn't remember things so vividly when i walked in rooms of the past.  it's as if i opened the door, and things came falling out, like fibber mcgee's closet.

one day i need to learn to live with the clutter, and not keep stuffing things away.

soon.

right now, tupperware is a comfort.

sigh