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.