chemo three: halfway there (livin' on a prayer)

(shut up, bon jovi!!!!)

ok... third chemo day.  third out of an ironclad six.  (i had thought i could get out of the last three chemos because i didn't feel the tumour anymore ....silly me.)

anyway....let's tell the news.

i came in, and for the first time got my lab work done through my port.  (the other times, my port had been giving me trouble.)  the nurse was having a hard time finding where the access point was.  (she said that my port was pointing upward.... leave it to me to be all askew.)  then she goes to put the needle in, and punches it harder than she wanted to.  profuse apologies.  no worries, i say, as i always do.  it's sore, and achy, but i know she didn't mean to.  it was because my skin was a bit thick around the port area.  (it's always my skin.)

she then put a line that the nurses can access to put in the various drugs that i have coming to me.  again, i hadn't gone through this.... it's weird to have this thing coming out of my body, hanging like a thread.  almost cyborg-like.

i go in to see the oncologist.  she almost immediately goes into the bad news..... she wants me to do all six chemos.  she says the classic line all doctors are probably taught:  "if it were my sister, or closest friend, i would make her do the six chemos."  i'm more disappointed than i let on.  i had tried my best to block out the hope of getting out of this mess early...but not enough to get my heart hoping.  oh well.

she asked me if i was more tired this time around.  i told her that the prednisone crash was a bit more severe this last time (nausea, mostly), but that i mostly was active, and not weary at all.  it sort of surprised her.  i'm glad for my extra energy.... i hope it lasts so i can really do things with the kids.

i told her about the doctor who said that lymphoma is not curable.  she was surprised, and asked if he meant a specific kind (like mantle cell).  i told her that my online cancer friend was told "all lymphomas."  she said that the type i had has a 50% cure rate.  straight cure.  she also said that i had an excellent chance of being in the 50% range, because my blood levels looked good.  (by now, a lot of cancer patients would be dealing with anemia.)

i asked her what would happen if it did come back.  she said there was a second type of chemo to try (r-ice) and then, if that didn't work, then a stem cell replacement, that would come from my own bone marrow.  (she said that i would tolerate my own stem cells better than a donors.)  so, there's always another treatment... this time, another two.  (which is better than one.  well, most days, anyway.)

so... disappointment, but not too bad.  i just need to shake it off, and go on.

she also said that she was scheduling me for a ct scan.  (she couldn't do a pet scan because the insurance said i couldn't do it because three months hadn't passed yet.)  a ct scan, as i understand it, will not show lighted up points where the cancer is.  but, since we know where the cancer is, it will zero in on those areas, and see if it's shrinking or not.  but, no matter what the results, i'm still doing three more chemos.  yeah.

now, i'm hooked up to the benadryl, and the anti-nausea drugs.  i had two tylenols, as well.  (this all gets me ready for any reactions i would have against the rituximab.)  the nurse who's in charge of my chemo is doing pretty good to tell me what i'm taking.... which is always nice.  she just told me that this much benadryl causes restless legs.... a problem i had had before, but didn't know why.

she also said that my bone marrow looks excellent, and my new white blood cells aren't as low as one would expect.  in fact, i look so good that she thought i was doing my first chemo.  so, there's that.

now i'm getting the vincristine and the aunomycin pushed through my port manually.  it's a tedious process for the nurse, and a bit uncomfortable for me, because i feel like i have to entertain her.  i used to be able to do that, but it's harder when i'm the one who's vulnerable.  i swear by the end of this i'll be more compassionate than ever towards the patrons that come in needing help....

it's hard not talking to someone who asks "whatcha thinking?" when you look off into the distance.  (ends up she had studied to be a psychologist before becoming an oncology nurse.  she's a good egg.... and we were able to talk without effort about tornados, helping people, earthquakes, and being a pediatric oncology nurse.  just being a nurse is brave.... to be an oncology nurse is the bravest of all.)

cyclophosophamide next....by iv. one hour of it.

i try to keep up with my social media stuff while i'm doing chemo.  (especially now, since i seem to be getting the benadryl fog at the end, rather than the beginning.)  i haven't been putting too many personal things on facebook.... there are friends and co-workers i don't want to freak out.  i'll be glad when this is over, and i can complain about things again.  (cancer makes you want to be this noble person .... and when you complain, people over-sympathize, and try to boost you up, when all you want to do is grouse.)

this is the first time i've come in with a clear nose... and it smells like pesticide in here.  and alcohol.  and regret.  (shut up! that's a smell, too.)

benadryl.  it's not messing with me....so far.  i have that full feeling.... lots of liquids, lots of drugs.... and the blurred vision thing is going on, too.  i'm also getting colder.... i know the drugs are a blessing, and i should be happy when i get them.... but it's hard to think this way when you're cold, numb, sad, nervous ... etc.

and now, the hour and a half of rituximab.  i've been online looking at articles about paul simon ("the sound of handcuffs"?  ouch.)  i've also written a poem from the point of view of the chemo drugs.  (but everyone will think it's about a fair weathered lover who leaves too soon.)

the thing i need to do is not despair.  i just have to keep doing what i'm doing, regarding the drugs.  be nonchalant.  don't think too much about it being poison, and concentrate on eating only the very best for me.  this time, i have to do a picnic with the boys.  the weather's keen for that, and i really need to walk more.

i'm a bit on the melodramatic side.  i used to say "i'm dying" over the craziest things.  when i was hungry.  when i was thirsty.  when i was bored with my life.  it was an overacted kind of moan about things that really didn't warrant the attention.  now i don't have the luxury of being over the top, because what's more over the top than cancer?

i think i'm pretty much done live blogging this chemo.   i hadn't intended on doing so, but i have a lot to talk about, i guess.  i haven't even gone into my wig journey (i'm going to get a few more, so i might as well wait until then.)

so... i'm over the disappointment.  i'm resolved to completing this mess.  i'll make it, as i always do.  awkwardly, but strongly.  i just have to trust in myself.... no matter what anyone says.

i'm all that i've got.

blessings

it's days like this that make me glad for life.

blessings:

a good night's sleep (with a dream that i was able to wiggle in and out of, and change a bit.)

no anxiety this morning.

two co-workers reached out to me this morning on facebook im.  (i know that's a little thing, but it makes me feel good to be remembered.  i went to work last night, and my boss said there was still a spot for me.  i miss helping people....but i know i need to heal myself, first.  but i miss it... more than i can say.)

no nausea.  (but i'm taking a pill before brunch to-day.  i'm going out with birthday boy son, the cool daughter, and the son's girlfriend on the rooftop of a downtown mexican restaurant.)

i smell nice.  (i probably do, anyway, but i swear i smell all chemo-y.)

i'm listening to good music, and i'm thinking of a poem.

life is hope.  and the world smells of a newly fallen rain, and growing plants....

please stay, sun.

tired nausea

i've been nauseous and tired for the past three days.

i know it's part of the prednisone crash, but i feel so helpless.  it's like i can't enjoy my food, without thinking it's all going to come back up.  (i haven't thrown up yet, but i hate the feeling.)  

i know i shouldn't complain.  i know that with each chemo it's going to get worse.... i just wish i didn't have to go through this.

a co-worker is going back to work after maternity leave.  another co-worker is talking on facebook about how difficult it is to work with another co-worker.  another co-worker may be leaving soon.  so many stories i miss out on.... i don't want to go back to work now, but i miss the people.

i miss living.

i know.  i'm living now.  and i need to find things to do to make me better.  i just wish..... i was there.  

i should visit soon, to remind myself how tiring it gets.  on a thursday, when my boss is there.  he's nice, and he is good about letting me do things in the back.

i'll get better soon.  and even if i am never 100% i can work on it... and find new ways of doing things.

i was so young once.

yeah, this is one of these whiny posts.  here's the part where i say i feel like i'm dying every day.  and i wish i was at the ocean.  and i wish i was healed, and back to my asshole self again.

and.... how different i will be when i go back to work.

but not now.  now i'm looking out the window at the cold sunshine, hearing the birds talking to each other..... wishing for picnics, and pools, and energy to play.

one day.  

one day soon.

 

sit rep

small picture of how i feel to-day.  to remember.

i went sandal shopping.  it took a bit out of me, because it was above 80 degrees.  i drank water all day.  i feel weak, and a bit light-headed.  last night, i was on the verge of crying because of something i thought i totally messed up.

right now, i'm trying to keep cool.  the female side of me is hurting (i need to really ask about this, because i did this last time, too).  i just ate, and it seems to be helping.  (no nausea!  yay!)

i forget that i had a massive bunch of drugs pumped into me monday.  i forget that i still have prednisone to deal with. but, what i really have forgotten is that i am on the last day of an antibiotic that was helping my neck pain (which is now gone).

it's funny how one little thing will make everything much worse.

i'm going slower this time.  i want to be able to have energy for museum day on saturday.  (i'm hoping to walk out into the gardens, and really try writing in nature)  i want to be able to take pictures, and let the beauty come to me.

the other night, i got my head shaved.  (i wanted to start fresh, and get hope from seeing new hair grow.)  i had two witnesses carefully watching.

the older one was giggle, and said:  "i'm of two minds right now.  one, i'm sorry you're going through this.  two, can i touch your head??!!"

the younger one rebuked his brother, and said:  "i'm really sorry you have the cancer.... i don't like it...but... um.. can i touch it, too?"

i'm glad to have this balance in my life.  people who aren't afraid to ask questions, or joke with me about things.  it's very healthy.

i can't wait to see, and feel the new me.

blessing: hats

i have found that the hats i bought for now fit different now that i have no hair.  i have a black beret that dips more to the side, and looks awesome.  i have a sparkling gold hat that i almost didn't buy, but am super glad i did.

and there's this hat....which makes me happy to-day.  it makes me feel like i can do this.... and, in looking relatively normal and fitting in, i feel better about going out.  the lady at the bagel shop was nice, and kind, and not in a condescending way.  no one looked at me in a sneaking, "omg she's sick" way, but in a "cool... neat hat" way.

maybe i can fool some of the people some of the time...... 

chemo two: electric boogaloo

my second chemo should have been a horror show.

i had no sleep the night before.  the night before that, i did not feel comfortable in my own bed, so i ended up not sleeping the entire night....only to sleep four hours of the morning away.

i went in drowsy and early at seven a.m. .....but still wired and buzzing from the prednisone.  (my appointment was at 7:45 but the email said that i should allow 30 minutes to ensure being seen on time.  ends up that the automated system was very new, and that i was already allowed 30 minutes.  that's going to help a lot next time.... i won't feel as pressured going down expressway roads.)

(i told everyone i wanted a chemo to myself.  driving there, and driving back.  by myself getting the meds, and everything.  it was partially because the support system i had at the last chemo put stress on me, instead of helping me.  also, i felt extremely self conscious because i had to go out with no hair.  and..... i really needed to do things myself.  once.  to see if i could do it.

i could do it.  and did.)

labs went quickly, which surprised be because i didn't drink a lot of water to make the blood flow that quickly. (lab is where they take three vials of my blood out so they can make sure i'm physically ready for chemo.)

i didn't talk too much to my oncologist, because we had had a nice conversation friday.  i did what i always did... make sure she left with a bit of a smile on her face...but i was sad when she left.  (i was still scared to go into the chemo ward.)

she did say that it was all right for them to use my port (the area is still red, but she said she saw more improvement in the area, and that the pink i saw was actually a healing pink colour.)

by the time i got to the chemo ward, i was.... i don't want to say numb, but i was feeling defeated.  did i not want to do chemo?  no.  i knew it had to be done....but i wouldn't have minded if she said wait a week.

i shouldn't have doubted the strength i had.

the pre-meds did what they did before.... jostled my system... made me want to tense up all the muscles in my legs.... made me sit up very straight and almost brace myself all through it..... then a nurse who was new to me pushed through another drug.... she was telling me that i needed to gargle with baking soda, salt, and water to restore the ph balance in my mouth.  i was so glad that the nausea meds were in me, because now i'm feeling icky just thinking about it....but, if i need to do it, i'll do.

i was finally able to catnap during the procedure.  i still need to get a travel pillow (especially if i've got four more journeys of this).

i wish i knew when the chemo started.  i know i was done at 12:45.  i took the roads slow, and made it home safely.  (something i shouldn't be trying again.  my oncologist said that i would be more tired with each chemo.... i welcome sleep, though.  i really need it at this point.)

so, this chemo was faster, and smoother.  i didn't feel like my heart was being compromised.  afterwards, there were a lot of people helping me complete my sentences, but i was only one word off, and i would have found it, if it weren't for those meddling kids!  :)  my eyes feel bigger, and i feel chock full of drugs, and liquids.  all i can do is drink a lot of water, and wait it out.....

i was glad i kept my humour to-day, and parts of a grace that i didn't have.  i'm hoping and wishing that i have only one more chemo, but you never can tell with cancer.... and i bow to the experts who are helping me fight against it.

and so my watch begins

necking

i really should learn how to title these things....

so, i went to the cancer center to have my port looked at.  my oncologist's nurse has a way of trying to break the rules....mostly so i don't have to pay a co-pay.  (especially good since i have to go in again on monday for chemo.) this time, the ploy didn't work...and i was sent upstairs to be seen.  (i don't mind this time.  i had a healthy paycheck this time around. )

my oncologist came in, wild haired, clogs a-clomping.... giving words of sympathy whole heartedly.... ready to sit, and really listen.  i told her about the pain in my neck, and how the port seemed warm to the touch....  she immediately leaped up, washed her hands, and checked the area in question, apologizing in advance for the cold hands.  (peoples' hands are seldom cold to me.  odd, since i'm usually the warmest person in the room.)

she immediately saw what the nurses downstairs saw.  a pink, raised area around the port..... (it shouldn't be that pink) that was warm to the touch (it shouldn't be that warm) that radiated pain from my chest to my right shoulder (even though it takes four to six weeks for a port to get to a normal state, i shouldn't be in this much pain....)

my oncologist was nodding her head, saying it was probably an infection, but it would be a good idea to get an ultrasound to make sure there weren't any blood clots.  she withdrew her hand from my chest, and i asked her if she could feel something else.  she vigorously assented, and i took her hand, and put it where the tumour wasn't.

(i say "the tumour wasn't" because i honestly can't feel it anymore.  i can feel phantom pains, but not the huge mass that it was)

she felt....and felt again.  her eyes widened.  "that's great!!!"  she was so happy..... giddily so.  she puts her heart so much in these different cancer battles.... i was glad to give her some good news.

i asked her if she was going to check my progress after the third chemo.  she said that's what they usually did, and that she would evaluate then.  i may just need three chemos, and radiation..... or six chemos.  it all depended on the results.  she did say that it was rare to see such a remarkable change in tumour size after only one chemo.

they sent me off with promises of antibiotics, and muscle relaxer.... to the ultrasound people.

st john must have been burned by bad patients, because they wanted a $100 deposit for the ultrasound.  i had the money, but i still felt this feeling of shame having to pay so much..... as if i was paying for the mistakes of others.  still, i tried my best to be happy in front of the billing lady.  they get enough gruff throughout the day.

the ultrasound lady was a lot like the echo woman.... she couldn't tell me anything about the results, because she wasn't a doctor, but the fact that i was allowed to leave the building meant that she didn't find anything unusual.

so, no blood clot.  but aw yissss muscle relaxers.  (which i'll probably only use at night.)  the oncologist said she would give me another prescription for ativan, if i needed it.  i hadn't the heart to tell her that i barely used the ones she gave me, because i'm afraid of turning into heath ledger.

oh, and to-day was the day i had to wear a head covering for the first time.  it was also the first time i noticed that people were looking at me, but not looking at me.  staring at me, but then avoiding my glance.  i wasn't mad....i just wish i knew how to look better.  shaving my head will help.... as well as the "look good, feel better" class that's coming up.

i need all the help i can get.

pain in the neck

i'm going to the doctor to-morrow.

(what what?)

well, yesterday, there was a pain on the right side of my neck, where the port is.  then, it traveled up to the head, and grabbed at my brain like an iron fist.  i had to sleep propped up, with my head supported.

all day to-day, as i waited for the nurse to call, i had ice packs, and acetaminophen, and tea, and lots of whimpers.

hopefully i can get this taken care of before chemo on monday.

in other news, i tried on several wigs the other day.  i have a big head, and none of them fit.  i'm going to have to either go online, or go to a ritzy wig shop for help.  should be fun.  luckily, my insurance will help pay for a wig...as long as it's under $150.  (come to think of it, i may have to go online.... i can see that happening....)

this, too, will pass.  it just sucks that something like this is happening at the time when my body is supposed to be at its most healed.  i need sleep for the coming influx of drugs.

this too will pass (all things must pass)