Saturday, June 29, 2013

balancing boats, carefree summers

an email from a friend inspired me to write a blog post.  an email from a friend about friendships.  friendships, relationships, friends, relations, well, that's the stuff that really keeps the boat from tipping into waters just darkened by the reality or the perception of cancer.  of course there are other things too (my bike, good food, 30 rock), but people-- thank you!

this second round, like the first, has been fairly gentle on me (maybe gentler overall than round one).  day one (chemo day) was by far the worst day.  worse than day one from round one, but i woke up the next morning feeling fairly fine and have felt fairly fine ever since.  not perfect, not normal in terms of energy, but fine.  i spent much of tuesday on the couch... tired's peak... but everyday i've been outside on my bike. thank you bike.  

emotionally, mentally, i'm doing well, except when i get an ache in my toe and convince myself this cancer has metastasized there (it's possible, you know), or the achy knee... was it just biking with the inflexible 'skinny jeans' i picked up for free at the co-housing place with the free clothing room?  yes it was. phew.

but maybe if you've ever had a baby... a challenging baby-- one who didn't sleep like all the books told you he'd sleep, then maybe you were like me in thinking, "it will never end.  life will never be normal again.  i will always be this tired.  i will never spend a normal day outside, enjoying life the way i see people enjoying life.  it will always be me, trying to find a way to soothe this little tiny disgruntled baby."

it is, in a way, how i feel with cancer.  that i've stepped off the track of normal society where people have carefree summers and have time to think about how best to raise their children or what advice they'd give to their twenty year old selves and well.. none of that is quite real is it?  that's just huffpost parents and blogs and facebook telling me that's what my life would be like if i didn't have cancer.  still... i feel a disconnect... with my past life... with my hypothetical non-cancer life... and i think sometimes, it will always be like this.  me, trying to find a way to stop this huge, horrible, disgruntled disease.  i will never have a carefree summer (as much as anyone can have one) ever again.  i will never be able to take back all the stupid cartoons we've let these boys indulge in since we first feared the worst and so therefore i will never be able to raise my children exactly as i want to.  and i don't know what i could have told my twenty year old self to make it so that i never got cancer in the first place, but what does it matter anyway, because i can never again not have cancer, even if, in the best case scenario, this disease takes up one year of my life and no more.  i can never take it back, and so, i think, it will always be a part of me.  i can never have lived a perfectly healthy life now.  and i can never not worry that this cancer will come back, assuming it goes away in the first place.

well... my short-sightedness... my perspective from the thick of trying to soothe a disgruntled little one or from trying to kill every one of the millions of wayward cells in my body.  i know logically, and from knowing others who have been through this and come out the other side and enjoyed carefree summers and raised their kids right, that i am seeing things from way too close up now to have any real perspective on it.

i know this.  and i'm grateful for knowing this.  because it's in knowing this and also in friendships and relationships (and my bike and good food and 30 rock) that the boat stays balanced.  that i can say, in all honesty, emotionally, mentally, i'm doing well (except when i get that ache in my toe).

Friday, June 21, 2013

round two

round two of chemo is officially done.  official in the sense that the drip is out of my arm (i try not use words like vein (but there i went and did it) because greg tends to get a little queasy with those kinds of things... fortunately not me).

so, what are my thoughts going into round two?  i'm not sure.  i'm just trying to treat my body well with good food and exercise.  for all of you out there thinking, 'man, she is too skinny right now.'  yes, i know. my thoughts exactly.  i think one effect of the initial stress was that i did lose weight, but you will be happy to know that i did not lose any weight in between round one and round two and in fact, seem to have gained a little.

i'm not experiencing that same intoxicated feeling from round one, strengthening my (now official) hypothesis that it is just a round one thing.  i began feeling drowsy pretty much as soon as the chemo meds were done, so we went home and ate lunch there, which was better anyway.  no more fried goat cheese.  ever.

so now i'm home.  a good meal in my stomach.  relaxing.  thinking that it would be a good idea to write this post for those wondering how the chemo went.  and for those wondering how the rest of our lives are going, one day i'll write a post about something other than cancer.  it wasn't really my intention to turn this blog into a cancer blog, but it wasn't ever my intention to get cancer, but here i've gone and done it, and the blog is a good outlet for me to discuss it with more than one person at a time.  but ask questions.  ask the questions you wonder if it's okay to ask "cancer patients."  say the things you want to say but aren't sure it's okay to say, because what do you say to a person in this situation?  well i'm no better at not sticking my foot in mouth than you, so go ahead and say it.  if it's not sitting well with me, maybe i'll say something, but really i'm still trying to figure out what's helpful and what's not.  i know that feeling supported in the decisions i make about my health is helpful.  feeling supported in general is helpful, but of course, you don't need cancer to want to have that need fulfilled.  i'm so grateful to have such a network of family and friends (i'm talking to you!) that i've never once felt like my cancer and i have been hung out to dry.  (case in point: my mom is here putting up with us and our crazy life and lifestyle for a MONTH!  i think by the end she can officially say that she's lived abroad in northern europe.)  so thank you, thank you, thank you.  i really cannot say thank you enough times and i wish everyone of you could feel all this love (if that's your thing) all the time... so go forth and love one another.  that's my official decree to you as the head of this blog (lacking in certain characteristics required for it to be an actual nation-state).  certain examples could include: a hug, a kiss, a 'how can i help?' if they need help, a tussle of their hair if they have hair, unless it would mess it up too much and would make them grumpy at you, food preparation, a 'thank you' if they've done something nice, a 'sorry' if you've done something not nice, a 'here, let me do that for you' if they're tired or lazy, a 'why don't we go for a walk?' because the outdoors is always a good place to be.  you can bring an umbrella if it's drizzling.  and of course, 'i love you.'  you can say it in danish too: jeg elkser dig (yI elskuh duh).

okay... nap time for me now.  hope this post wasn't too gushy or mushy for you.  we can blame it on the chemistry.

Thursday, June 13, 2013

an update from me this time...

i know i'm still a chemo novice, but what i've learned from this first round, and, only speculating that it will hold true for the next seven rounds, is that the side effects do not abate in a nice linear fashion.  (and when i say linear, for all you mathematicians in my life, i'm picturing one of those line charts, with the line that starts at the top on the left and goes down like a slide, until it hits zero.)  i had chemo two fridays ago.  let's forget about the nausea.  that was short-lived this time around and manageable.  and... predictable.  and... linear (see definition above).

the tiredness side-effect seemed to hit at random times with different intensities for the first seven days.  there was never a day i spent completely under the covers, shut off from the world.  in fact, in my own memory at least, there was never a time i was in bed for more than a couple hours, though maybe greg or his dad remember it differently.  in general though, i'd become more easily tired out after putting forth a normal amount of effort toward, for example, taking care of our guys, changing the sheets on our bed, a bike ride... i came to an early conclusion that an early bedtime was the way to go, but i was not always able to accomplish this for the mere fact that i still value those quiet nighttime hours above an extra hour or two of potential sleep... that and the fact that any fears i have (of metastases, of long-term side-effects from extreme treatments of extreme diseases) will inevitably hit me hardest when i'm supposed to be falling asleep.  still-- maybe for the future i'll do a better job at worrying earlier in the day and prioritizing more nighttime sleep the first week after treatment.

tuesday was perhaps the peak of exhaustion for me, but this may have only been because of the fact that i was in school and tried to get through as much of it as i could before finally succumbing to the fact that i could not sit there any longer and left during the break of my second class.  on saturday though-- eight days after treatment, i got through an entire day without feeling like i needed to lay down and rest for whatever amount of time.  sunday as well.  you even would have caught me running a bit on my walk that day (and also helping a woman with dementia who, in the end, according to the nurse who came down the street and found us wandering around together, didn't actually need my help.  oh well.) and monday too... a day full of normal energy.  

tuesday though (two days ago, 11 days after chemo, week two, when apparently my immune system is at its worst) i went to class, which was actually brunch at my teacher's place, and started feeling achy.  i considered not going to math class after, but thought perhaps the bike ride over to school would revive me a bit.  but math was just aches and feeling cold, so at the break, i left.  a twenty minute bike ride feeling like that isn't so grand, but i was happy enough to get the forced exercise.  i got home, got under the covers.  got up a little while after the guys got home from school... feeling better but not all better.  but the next day (yesterday), i woke up and all was normal once again.  not tired. not achy.  just plain old, all better.

so who's really to say what fault chemo or cancer played in tuesday's outlier.  it never led to a fever, so i can't complain.  i pushed it on my bike a little bit to get to the brunch on time, and because i was feeling so good, so perhaps it was that.  i've been a bit more careful on hills the past couple of days after that.  i do notice that my muscles feel tired (at least temporarily) pretty quickly after, say, going up a hill.

today i go to the oncology shrink, just to shore up any loose ends in the mental health and stress department.  maybe to find a way to quiet those fears i mentioned earlier.

also trying to find that good balance between omega-3's an omega-6's.  it would be good for you too... we should all be finding that balance together.

so that's life.  some of it at least.  but i can tell you, it's so much, much fuller than this... as you must surely know too.

Monday, June 10, 2013

so far so good

(greg here)

all's well with the chemotherapy so far.  round one seemed to go well, but I'll have to let Regan describe it in more detail some other time. it appears quite dynamic and hard to say what each day will bring. overall treatment marches acceptably forward.  

the weather here is fantastic and that allows us to relax a bit.  today W and my dad (Blaine, aka grandpa woof, aka farfar) had a 5-year-old's dream-come-true kind of day. they skipped school and went to tivoli.  by all accounts it was as good of an adventure as you could guess: hotdogs, popcorn, ice cream, slushies, rollercoasters, and carnival games.

and now to end this short post, like always, there are pictures to remind our future selves of the past.

ferris wheel... or safari cart...  something fun, whatever it is.

grandpa woof with a pile of rats.

the beach at hundinge.

Regan right before chemo.  she has since gotten a short 'transition' haircut, and I cannot find a picture.  it'll get posted though.

the heavy, fun, kind of rain.

Saturday, June 1, 2013

what doesn't kill me gives me cancer

that's a joke!

is there a honeymoon period for everything in life?  cause i think i'm in the honeymoon phase of chemo.

here is the (hopefully) quick and dirty...

greg and i rode our bikes to the hospital yesterday.  after waiting just a few minutes the nurse, who ended up being the super great english-speaking nurse, kathrine (pronounced katrina), came out and took me to the room she's in each day, with three spots for patients getting chemo.  that seems to be how they do it here... smaller rooms with a few chairs and a nurse's desk instead of the one big room i pictured from 'breaking bad.'  the nurse told us there'd be another patient coming in at 10, but he or she never did, so i had the room to myself and greg got to sit in one of the comfy chairs.

anyway, she explained things, we asked her questions, and she went and got the meds.  i get two chemo meds for the first four rounds and a different med plus an extra kick of steroids for the last four rounds.  apparently these meds are the standard treatment for breast cancer right now, so even if i were in the u.s. i'd be getting this cocktail.

the meds came in through an iv drip (i don't actually know all the terminology yet, but you get the idea, right?) to a vein in my left arm.  the first med is red and if you forget this, you'll remember it the first few times you pee.  the second med gives your nasal passage around the top of your nose and behind your right eye, a strange feeling.  each med only took about 20 minutes to go in.  i didn't even get to finish my magazine article!  i signed up for some trial test run of an online system they're considering, where i log in and give my symptoms over the internet (as it goes now, a nurse will call me the day before treatment and see how i'm doing... i'll also travel over to the hospital to give them my blood that day before treatment to make sure my immune system's up for another dose or if i need to wait a week.  fortunately, all the cancer patients get to show this little orange card and jump to the front of the line at the lab.  it does not, however, work at the super best.)

what else?  well, i guess that was it!  i was hungry, so greg and i biked into town and had a lovely lunch that i now completely and totally regret having.  never mention goat cheese salad to me for the foreseeable future.  it's the one thing that truly makes me nauseous (which i still have trouble spelling... that and 'mastectomy' and 'metastases' i've learned).  anyway, it was a nice lunch and i was not instantly nauseous over it.  that came later in the day perhaps... i can't remember now.  it feels like i've detested goat cheese salad for my entire life at this point... anyway, then we did a little shopping, for a binder for will, so he could make his first book, for a new hair dryer-- cause you know, i'm so in need of a new hair dryer right now (but the other one's conking out (okay, just spelled conking with a 'k'-- the danish is taking hold) and well, there will be mothers coming who will need one), etc.

the nurse said patients report feeling, not quite intoxicated, but that they can feel that something's in them.  i think what they really mean is that they feel intoxicated.  because that's how i felt.  but in the fun 'let's go camping!' kind of way.  greg was afraid i might walk out into traffic, but i knew what i was doing.  why doesn't anyone ever tell you about this fun side-effect of chemo?  probably because it only happens the first time and then you feel like crap ever after.  but i enjoyed it while it lasted... which seemed to be at least a few hours.

we biked home with no problem.  a little slower than usual, but not much.  maybe a half hour after getting home i got a large wave of exhaustion and laid down while greg and his dad (who's in town now, did you know?!) went to pick the guys up from school.  i think it would have been pushing it to go with them at that point, so i didn't push it.  i'm not going to push it folks, except in emergencies, so don't worry about that.  i only needed to lay down for 10-20 minutes before the intense feeling of tiredness passed and i was up to greet the guys when they home from school.  dinner was good.  two burritos, admittedly a little smaller than pre-chemo regan would have taken, and no cheese on them... that didn't sound appealing... but still, i ate.  by around 8 i was ready to go to bed.  i snuggled with william and we read the new book that he'd put together with his grandpa, of all his battle drawings.  i probably fell asleep around 9.  i had no problems sleeping.  was up by about ten till 7, feeling a little nauseous, which was fairly easily taken care of with some cereal and tea.  (and then at 8 o'clock, my scheduled anti-nausea meds, which i take on a scheduled basis until tomorrow and then on an as-needed basis after that.)

i would say this morning was mostly a regular morning, through lunch.  i showered, hung up laundry outside, walked to our friend/old landlord's house to let her cat out.  (we're cat sitting until tuesday.)  played with the guys, ate almonds and pears, ate two more burritos at lunch.  but i was starting to get tired soon after lunch.  william has a birthday party to attend tomorrow, so greg and his dad took the guys to town and i was able to just be a blob and relax (and watch 30 rock).  i didn't fall asleep-- i don't know that i would have been able to, but it was nice to just lay around.  i got up when they got home, but then laid down again for a little bit (and watched 30 rock).  greg and his dad cooked dinner. the smell wasn't too appealing to me, so henry and i walked to the old house to let the cat out... she's very danish in that she's mostly an outdoor cat and just a little bit an indoor cat.  it was a really nice way to get a bit of exercise and fresh air.  we ran into old neighbors there and now i've even got a lunch date on wednesday with a hair cut thrown in (i figure i might as well get some of it out of the way now).  if you'd seen us going home you would have seen me sprinting down the hilly slope of the bike path and our road after henry, who is becoming quite adept and confident (was he ever not confident?) on the scoot bike.  that, i will say, was an even better way to get a bit of exercise.

by the time we got home, greg and his dad had cleaned up most of the dinner pots and pans, which was a nice treat, because the smells were gone, and the dinner-- a mild white fish with lots of lemon, some soba noodles and peas, and a salad (sans goat cheese) was really delicious.

henry, who didn't nap, went to bed early, and now william and greg are watching 'star wars'... a rite of passage for the little guy.

well, so that's how it is for me right now.  however i will feel tomorrow, or after treatment two, or especially how i'll feel after treatment eight...  whatever foods i stop tasting or smelling or throw up...  however tired i become...  whenever i stop having the energy to chase henry down the street...  well... none of that's now.  now, i enjoy it all while it lasts.  (and when i lose it, i'll know i get it all back... sans cancer, sans chemo, and probably for awhile, sans goat cheese.)

and then a kiss...