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.....

chemo 5:five alive!

my regular oncologist was back, so i went back to her, rather than the substitute.

she was very sorrowful for missing out on my port adventure.  she let me tell the story of how the port felt itchy after i was out all night in the elements.  she said that allergies aren't localized to just the port area.  she said that when they checked my white blood cells just before this incident, she noticed that they were lower than usual.  she thinks that was the culprit.  (it helps to have someone who looks at the full picture, and all the charts.... looking for a pattern.) she also said she would have had the port taken out a month or two later.... but i'm glad it's out now.  (especially if i have to have radiation on that side)

the nurse practitioner said that my glucose levels were up, but not dangerously so.  my oncologist said that would happen when you get steroids.  i was relieved when she said that.  my mother had diabetes near the end... i have to keep away from that.

she was concerned a bit over my higher heart rate.  (so was her nurse.... she insisted on a hug, and told me all will be better soon.)  she said that could be because of the stress of getting here (i told her i was in no way used to morning traffic), or it could be because i was dehydrated.  she said that the chemo will give me fluids to help me along (and how!), but i think it was more because i got a little lost when i missed my exit.  i am *so* going to leave early the next time i go in......

i'm going to have a last chemo on the 7th.  (not on the 4th, when it naturally would fall.  that's a holiday, and i'll more than likely be spending that at home watching strange movies.)  i have a pet scan that will be scheduled the week of the 14th, to see if there is any more cancer in me.  she'll call me with the results.  if i still have cancer in me, then i will have approximately 30 sessions of radiation.  (4-5 weeks)  my oncologist assures me that i can work during radiation, but i'm still on the fence about it.  i mean, i'm tough and all....but am i mentally ready to return to work?

she didn't have much to say about my eyes.... i think i'm just going to have to make do with re-wetting drops, and hope that they return to normal soon......

the chemo was longer, and a bit rougher.  they jabbed both arms (not hands, but inner arms) to get an i.v. in.  i was very timid at first to type.....and even now my right arm feels swollen.  one nurse was asking questions i had never been asked, and i got a "i shoulda been a doctor" vibe from her.  it was ok, though.  some people are like that.... i sometimes get that way when someone thinks i can't do what a librarian does.  i wish her well.  i've got that "full of liquid drug" feeling i always get....but this time i'm drinking more water.  i'm a thirsty thang!

i was in better spirits this morning.  it was good to see my oncologist, and i joked with her a bit.  made me happy to be happy with her.  the chemo was a bit sketchy, but it's passed.... and there's only one more to go.

i might be able to pull this off, you know?