Monday, October 6, 2014

Inventory

it's a forever game of catch up with this blog.  i'll do it in list form.

things we've lost

our washer/dryer combo
one mitten
our patience, occasionally

things we've made

indian food
soap
toothpaste
granola
yogurt
birthday cakes

things we've planted or transplanted

kale
rainbow chard
collard greens
cilantro
green onions
raspberry plants
lovage
oregano

things we've purchased

a new washing machine
a new pair of gloves-- junior sized
children's birthday presents
books (see things we're reading)
art class for w.
an aloe plant

things we're doing now that it's fall

harvesting our greens (see things we've planted)
picking apples
lighting candles at dinner and sometimes at breakfast too
continuing to sleep with the windows cracked open
wearing mittens on cold morning rides to school

things we're reading

100 years of solitude -- regan
the miracle of mindfulness -- regan
the immune system recovery plan -- regan
the hormone cure -- regan
taproot, issue 11: mend -- regan
white fang -- greg
wild trek -- william
any thomas the tank engine book he can get his hands on -- henry

places we'll go

germany in october -- greg
norway in october
spain in december

things we're pretending

that it's our birthdays even when it's not -- henry takes the cake for this idea
that we see ghosts -- henry
that we see monsters -- henry

things we're repairing

greg's old bike
me

things we're collecting

horse-chestnuts -- henry
pokémon (etc.) cards -- william
foreign currency -- william

birds we're watching out the window

magpies



Monday, August 25, 2014

monday

henry seems to have come through his tonsil surgery just fine (with a follow up appointment next week to get the medical opinion on that).  he seems to be sleeping more soundly, (certainly more quietly).  on three occasions he did not wake up upon wetting the bed, though i have no control to compare to, for he was in diapers pre-surgery.  but on two accidentless occasions he has gotten up from his bed and come into our bed, as he did every night pre-surgery, his entire life that he's known how to get from point A to point B in the middle of the night.  this is on the two nights he was not already in our bed as we were instructed to have him in there, in case his mouth started bleeding in the middle of the night.  so... the verdict is out on his quality of sleep, but it's certainly no worse since before the surgery.  and now that he's out of the danger zone, so to speak, he's back to school.

so now it's a quiet house once more.  i'm tempted to turn on 'Jake and the Neverland Pirates' for a little familiar background noise, but i can also easily sing the theme song to myself, in my head (whether i want to or not).  that, favorite of all favorite cartoons, being one of the tricks to keep little H man calm for the past two weeks.  and lots of wooden railroad tracks, and trips to the grocery store in the burley and picking up big brother from school and dropping him off in the mornings on the days greg was in prague for a conference and it was just the three of us. and ice cream of course.  i'll miss the little guy's daytime companionship, but i know he loves 'børnehave' (pre-school) and the very many positive reasons he attends have me satisfied it's the right thing for him.  still, though there are no part-time options at his school (or most børnehaves in denmark, for that matter, so far as i know), i may keep him home on fridays.  it was something i had wanted to do awhile back, after my school schedule changed from mo, th, fri to tue, wed, thurs, and after he started to get older and a bit more willful and challenging in his nursery class, but it feels like not long after that decision was made, i was diagnosed with cancer and life at home became less predictable in so many ways, so the structure of school seemed just the ticket.  as it still does now.  he is a boy who needs structure and predictability and his pre-school class is wonderful at giving this to him (and we at home are getting better at it too, now that life has settled down once again).  something i was able to see in henry with the turnover of visitors (wonderful visitors!) during my treatment, and also again, this summer on our trip to the u.s., going from one house to the next, is that he has difficulties surrounding transitions.  it is certainly one trigger for seeing his more challenging behaviors in full display.  and smaller transitions can do this too, but one-on-one he is nearly always content, so i think fridays at home will be a wonderful plan for us both.

i am also sitting on the fence about something.  i can't decide whether or not to go back to danish classes.  they began two weeks ago, the day of henry's surgery.  to be honest, i don't want to go back, except that i'm not in the habit of not seeing things through to the end (the end, if all runs on schedule, being december).  one of my main hesitations is that my energy level is not what it was, maybe not even what it was during most of my treatment.  i feel like i'm ninety, people!  i'm going to offend some ninety year olds in saying that, and i apologize in advance, as you correctly read between the lines that feeling like i'm ninety is a negative for me.  so it feels precious to me.... my energy, that is.  i have this feeling that i need to guard it and be careful with what i spend it on.  there is a finite amount in any day, in any period of any day.  if i run out of it, which feels like running dead on into a wall, i have to spend anywhere from an hour to a day or two (if i've been a zombie (see below) for too many days) of not doing anything, to get it back.  if i can't stop when i need to stop, maybe because greg is out of town and the boys are home, i feel like a walking zombie.  pushing through water or something thicker (a wall maybe) to get done what i need to get done.  if you do a google search about cancer and fatigue you will see the many articles, including scholarly, written about post-treatment fatigue, and i think this is most certainly what i'm feeling.   here is one description from an abstract (and here's the link)...

Fatigue is a subjective state of overwhelming, sustained exhaustion and decreased capacity for physical and mental work that is not relieved by rest. Cancer-related fatigue has many causes. Included in the causes are the illness itself, the side effects of virtually every treatment, depression, and other biopsychosocial factors. As a result, fatigue is the most common symptom reported by cancer patients in most descriptive studies. In addition to arising from multiple etiologies, fatigue is also multidimensional in its manifestation and impact. Its effect on the quality of life of the patient is comparable to that of pain. Experienced by most patients as an extremely frustrating state of chronic energy depletion, it leads to loss of productivity which can reduce self-esteem. As a subtle and chronic symptom, it also places people at risk for being questioned about the veracity of their complaints, particularly during the post-treatment, disease-free survival period. Patients themselves are reluctant to complain of fatigue, perhaps because they believe little can be done about it, or they wish to avoid drawing attention away from treating their cancer.

i agree in that, long-term, it is not relieved by rest, but certainly in the short-term, i do feel a difference after resting.  i also agree that it's extremely frustrating, though i try to think about the fact that it should get better over time (perhaps on the order of years, but still, no one's saying it's permanent) and that perhaps my kids are little enough that they don't remember a time when i wasn't so consistently tired (i hardly remember that time myself, or at least what it felt like to go an entire day without needing to rest at various points) and by the time they're old enough to compare me with other, more energetic mothers, i will be 'back to normal.'  i also agree that it most certainly leads to loss of productivity as, for example, it took me until this weekend to get all our boxes fully unpacked, that the idea of preparing for, say, a job interview exhausts me, that i have to think hard before (for example) running the vacuum cleaner, as i know it's going to wear me out physically or at least the energy it takes to run a vacuum cleaner will be dutifully docked from my limited supply of energy from whoever's in charge of the tally, and again, what can i afford to spend my energy on?  if i'm vacuuming to clean up before guests come over, will i then have enough energy to visit with and entertain those guests?  and school... i'm supposed to take an oral exam within the next week or two.  i haven't read all the books i'm supposed to read for it and i haven't prepared two topics to talk about... all around i'm not prepared, and it sounds exhausting to me just to imagine getting myself ready for it.  it makes going to school (for which i'd be happy to get the forced exercise three days a week) seem almost not realistic right now.  silly, i know, because so many people go through all of this cancer treatment and have full-time, mentally or physically demanding jobs.  it seems sort of wimpy for me to say i can't attend class a few days a week or sit for some silly exam... and i suppose that's where some of those reduced self-esteem feelings could come from.  because i do feel like, i should be able to do this, i should push through, i shouldn't give up on activities because people are going to say (and i'm going to say to myself): a) that's the complete opposite of what you should be doing to get your life back on track and to get rid of the fatigue, didn't you see all those articles about exercise???; and b) what are you doing then, and what are you going to do in its place, because you have to do something, you can't just not do something; and c) you want to talk about tired?  let me tell you all the things i do in a day while you're sitting around and then we can talk about tired.  (okay, i can't say that last one to myself.)  i know, i know people, we are all tired.  you, maybe more than me, me maybe more than you, you, maybe for better reasons than me, me maybe for better reasons than you, but the point is the same: if tired ruled the world nothing would get done.  yes, i see that, and i want to get back into that boat that rows on in spite of tired, but frankly it's moving too fast for me right now and i have to listen to my body telling me to take it easy for a little while and because i'm able to choose the other boat right now, you know, the one where everyone's dropped their oars in the water because they're so tired, that's what i'm going to do.  and it's not like a car suddenly appeared in the parking lot with our names on it.  it's not like i'm not going to be using my two legs to pedal me around for drop-offs and pick-ups and appointments and hauling groceries and whatever else (for a 90 year old, i'm doing pretty well).  it's just that these are the honest to goodness feelings i have that you probably wouldn't have in my case because you are able to analyze things with a clear head.  it's just language class.  i need to just get over the dilemma of it all.  i really feel like i need to focus on making myself better now and yes, maybe not giving up on activities and biking across town three days a week is one way to do that, but it's surely not the only way.  i don't know the answer but i also know i have to stop worrying so much about getting it right.  so... decision made.  i'm not going back to language classes, at least for now.  okay, phew! that feels better!

well, this has turned into a long pictureless blog post.  if you've stayed to the end, perhaps i can find a picture or two for you.


in the rain...


on the bus...


right before the first day of school.  the tie actually stayed behind, unfortunately.  his choice.


shaking the principal's hand and getting his flag...


the 0 grade class...


at his desk...


just some well manicured apple trees i like to admire along a bike path...


henry's surgery day...




on the bmx course...


climbing...


greg...


more climbing, more colors...


even more colors...


and then double the colors...


after a little redecorating... almost makes the orange couch look bearable...


the kitchen...


that's all for now!

Monday, August 11, 2014

4 minute update

4 minutes... okay 3 now because i had to log into blogger.

because in three minutes i want to call the hospital and find out what time little h man goes in tomorrow to have his tonsils and (probably) adenoids removed.  so that's happening in our lives.  then i have to keep him calm for 2 weeks.  you know henry?  you're probably wondering just how i'm going to do this.  well... good question.

and then i'm going to pick william up from his very first day of school!  actual school, not preschool, or what is known here as kindergarten for 3-6 year olds (so what henry is in now), but actual zero grade.  which is... i think... equivalent to american kindergarten.  they start kids here a year later than they do in the states.  so that's happening too.

our trip to the u.s. was a success and somehow we managed to move into our new place the day we arrived back, jet lagged and carrying 3 50 pound suitcases and 4 backpacks among us on two trains and a bus.

greg: last week he got to work at CERN in geneva, so that was pretty cool for him.  now he's busy with experiments, using the things he made there.

me: well, tired, but chugging along.  i've got a couple tests coming up on wednesday, follow-up, routine ones to make sure i'm still a cancer-free individual, which admittedly i don't always imagine i am.  like that game you play at an amusement park, hitting the little heads that pop up with a hammer... as soon as one ache or pain goes away, another mysterious one pops up in its place.  i guess you could say i'm looking forward to hearing what these test results have to say.

anyway, that's that.  and now i'm 4 minutes past my timeframe, and oh man... it just started raining.  ah well.

Wednesday, May 28, 2014

a trip to the circus

i'm sitting in a distinctly scandinavian designed chair looking out at the mess we have made in our temporary apartment.  toys strewn about the floor and me afraid of doing anything with them because i can't say what goes where.  william will have that all figured out in his brain anyway.  the suitcases i could do something about, and the rest of the dishes, that pair of socks on the table and all those clothes upstairs that need to be washed...

so our temporary situation is that we rented a place through airbnb, someone's beautiful scandinavian designed, inside and out, house, because, per agreement, we're moving out of our current house at the end of the week (though, practically speaking, we moved out on sunday... greg pulling two full suitcases in our ratty old burley, me pulling henry and a bunch of loose ends in the other.  all of our food, the last of our milk, balanced precariously in a box that didn't quite fit in my bike basket... the onions spilled out on the final stretch... william got a flat tire before we'd even hit the super best... it could have been a scene from the play, 'the grapes of wrath in modern day denmark' because clearly that's about as hard as it gets here and we're really the only ones on the road doing it).

though we could have stayed through the end of our lease which would take us through most of the summer, we are traveling to the u.s. for six weeks at the end of this week and didn't think it made much sense to pay rent if we didn't have to, and then very quickly (within 2 weeks) have to move out and move in somewhere else upon our return.  aside from saving a little money though, i'm not sure we made things any easier on ourselves.  now we are moving out, putting things into storage, flying away at the same time, flying back and moving into a new place on the day we fly back.  that's going to be one long day.  maybe we should try to rent this place that night instead.

other than packing up and moving out, i look at back at our calendar for may and i see play dates, dinner dates, birthday parties, enough medical appointments to make you think i'm 95 years old... no... scratch that.. if you're healthy enough to have made it to 95, you probably don't have as many medical appointments as i have... lovely visits from a friend and even family... a trip to the circus, a gymnastics morning (with one of those play dates while greg and a few friends moved the heavy things into storage), a parent-teacher conference, tutoring sessions, lease signings... i could go on.

but everything's good! well, we're stressed out, that's for sure, but i think the busier i am, the more energy i have (though tonight i've allowed myself to sit down to write this and well, i'm not the one getting the laundry done or even moving those socks off the table).  i feel really quite good lately.  i don't feel weak or necessarily all that wimpy or tired.  well, tired only because we're so busy, but not the kind of tired i've often felt for no good reason other than all my treatment.  i told someone the other day that in the same way the inuits have 50 words for snow, i know many kinds of tired... the go, go, go, then hit the wall tired, the low energy the entire day tired, the overwhelming muscle/joint tired, the mental tired, (etc.), and it's not that most people don't know these tireds, it's just that these tireds and i have become intimately acquainted over the past year.  that they are a big part of my everyday life. now it's usually the first kind.. i'm good until early evening and then i slam into a wall with the overwhelming muscle/joint tired with a good helping of mental tired thrown in... only for the past few days, it hasn't been so bad.  i feel it now, but it's less overwhelming, and also, like i said, there is a good reason for it.  i'm moving so much.  so, at least for cancer... at least for me... at least for now... expending energy leads to energy.  thankfully.  because there's no shortage of things to do right now.  and yet suddenly, on friday, we'll be sitting on a plane for 9 hours (or something like that) with nothing to do... well... nothing to do except keep these two guys entertained.




thanks to greg's uncle for capturing such sweet moments the other day!

okay... onward and upward!  

Thursday, May 22, 2014

a little post

i have 15 minutes before i have to leave.  someone recently suggested perhaps i could do a 'teaser' post, as i keep saying (with absolutely no evidence to back it up) that i'm going to write a post again soon.  so here is the teaser so you know i haven't fallen off a cliff somewhere... maybe on that mountain you had to keep reading about.  the lion seems to have retreated somewhat since that last post.  or at least i don't see much of it.  i will today.  i'll just get a glimpse of it, as i go in for a 'routine' (?) CT scan.  that's why i leave in 15 minutes.

to explain, since i last left you, i had a PET/CT scan... why???... was it simply because i kept complaining about my lungs... crazy that i can't even remember why they ordered it.  i think it was to just look inside me and see how it all looked after all my treatment.  was the cancer in fact gone?  so... the answer to that PET scan was, 'yes.'  it's all gone... well, yes... except... there are a couple spots on your lungs that lit up and we don't know what they are.  which is how i came to be introduced to modern medicine's torture device #37, the bronchoscopy.  where they stick a camera down your lungs and your body hates it so much that it fights against it despite the fact that it has been drugged and you're supposed to be relaxed.  they did a biopsy of a lymph node and a lavage, where, as part of the torture that will hopefully work to save your life if it comes to that, they squirt liquid into your lungs and then suck it back out to get samples of whatever they can i guess, to biopsy.  and those came back normal.  hallelujah!  i seriously had not been so happy at any stage of this process than i was when my oncologist called to tell me that piece of news.  because finally, it felt like i was given a clean slate... for however long i'm destined to keep it.  it's what i've been hoping for, ever since i could see clearly that this is what every cancer patient wants.  but... of course, things are never truly over when it comes to breast cancer.  so i go in today for one of my 3 or 4 future CT scans in this next year.  just to keep an eye on those spots, since they were PET positive after all, to see if they grow.  because if they grow and if they're still PET positive then they will not take any chances and they take out that part of my lung... because well... i've got two after all... i guess... but seriously, apparently they have seen good outcomes on young people who have a metastasis in one place and they surgically remove it.  so my doctors are keeping a close eye on things for the first year or two while my chances of a spread are the highest.  until we learn to live with the risks.  not that having 4 CT scans a year doesn't come with its own risks, but those consequences won't reveal themselves for another 30 years or so.  well... 3 minutes left.  i'm going to end this teaser post so i can go get x-rayed.   goodbye and thank you for reading!  (and despite all my complaints, i really am truly appreciative of what modern medicine can do for me and do to this cancer.)

Monday, February 24, 2014

nothing but blue skies and mountain lions

well, i'm logged in, i'm not in radiation (that ended last monday), i'm not back in school (that starts tomorrow), so i might as well post.  it's been awhile hasn't it?  are you still there?  i'm here.  tired most days still.

i think because it took so much physical effort to get myself to radiation and back each day, i imagined myself finishing up cancer treatment at a steady run.  easy enough for me to say.  i don't run in real life, but i like to imagine my little life's challenges as races.  law school was a marathon.  child birth was something of an ultra-marathon in a desert.  cancer treatment was maybe like a 20K.  cancer... maybe like being stalked by a mountain lion... on a mountain... in the dead of winter and you've never climbed a mountain before, and you didn't bring the proper clothes and the lion is hungry and he's got his sights on only you and you know he's a lot more clever than you are.

anyway, back to the race.  the 20K.  maybe it was longer, but i've just forgotten.  maybe the radiation was 20 and the surgery was an uphill 5 where you tripped and have a permanent injury with a permanent scar and the chemo a bunch of 10's.  if only i actually ran these kinds of races in real life, i'd be able to make an accurate comparison, but it felt like what i imagine those runners feel like who run to the end and then sort of collapse right at the finish line, or not so much collapse as stop abruptly and hands on knees proclaim as they huff and puff to catch their breath that they're not going to get up off the couch for the next week.  though maybe you don't say that after a mere 20K, but maybe i'm just a really bad runner... which is true.

so i spent most of last week on the couch or in bed napping while the boys were in school, and dealing with this most awful of sunburns, though in reality not a sunburn at all, and hoping that this breathing problem of mine is just pneumonitis, or inflammation of the lungs caused by radiation, and not something worse (i.e. cancer).  sounds doomy and gloomy and i guess cancer is like that in a way.  but if i could separate cancer into the mental and the physical, well, this is going to sound contradictory, because of course that ever present lung issue of mine revolves mostly in the mental sphere (at least, i hope), but if i could separate cancer into two parts... what it's done to me physically and what it's done for me mentally, then it's not all doom and gloom, because being stalked by a mountain lion really does sharpen your focus, puts your goals into nice, simple form.  physically of course, there's no question.  cancer sucks.  treatment sucks.  you're no better off for having had cancer or going through treatment physically speaking, except that treatment might keep you alive longer to see your children grow up, which is one of those goals that the mountain lion helped clarify for you.

two weeks ago a fellow cancer mama i met through a homebirth listserve died.  she was unfairly on cancer's fast track.  its crash course.  i never met her in person.  we were similar in that we didn't have a lot of cancer peers.  when you're 'fighting' cancer in your thirties, you're usually the youngest person in the room and usually the healthiest cancer patient in the room by default that everyone else is already on the inevitable downhill slope of time.  doesn't matter that they might be statistically better off than you, because your cancer is more aggressive, often by virtue of the fact that you're younger and younger people have more aggressive cancers and also that you have so much longer to try to live cancer-free if you want to live into old age and statistically it's a lot easier to live into old age if you're already basically there and your cancer's not putting as much effort into you, as say, Ginny's put into her.  anyway, maybe when cancer (or other dangerous activities... drugs, war) defines the membership of your club, it's better to have a smaller group, i don't know.  i just know that it felt horrible to learn that Ginny was in hospice all of a sudden.  that her cancer could be that ruthless.  that her own sense of things, that her own fighting spirit within, all of her perseverance was not enough to sustain her body infinitely.  that she, because she was young, could go to school, raise her children, be on treatment, even dance and make a music video at christmastime and still... cancer pounced and two children lost their mother in february.

seems better somehow not to give cancer so much thought.  let it take up so much space and so many words, but when it becomes a part of you, well, if you're like me, it just becomes impossible not to.  i don't know how long cancer lingers in one's mind after it's been poisoned, cut out, and burned.

oh, but it can't take up each and every line of this post.  i will put up some pictures so you believe me when i tell you that it really, truly isn't all doom and gloom in these parts.  it's a lot of happiness, and for you in the cold areas back home, it's warm weather too, so even a little something for you to be jealous of... not that i want you to be jealous of me... there's just so little about my situation that would provoke such feelings in a person that i feel the need to point them out... i might be standing on a mountain in the middle of winter figuratively, but in reality, there's green grass and blue skies right outside my window, and silly faces like this to greet me...



henry turning three...

radiation town... famous for things other than giving me radiation i realized...


there's that face again...

at the geologisk museum in copenhagen...


and this little face...


shielding his ears from the circular saw as it sawed into rocks...


waiting for his turn to see what his rock looks like on the inside...

all agate... 

the husband and me.  you might note the hair.  it's scruffy but there.


and now perhaps to enjoy the weather while the blue skies last.

Wednesday, January 29, 2014

wednesday

so i am in, i think, week three of radiation.  perhaps day 12 out of 25.  i was keeping good track for awhile, in my brain.  (i still have it all written out on the calendar one room over.) i thought it would just naturally count itself down, each and everyday, but it has already become such a routine that i hardly think of it anymore.  i do a lot of reading.  i'm on book number three.  (first was the valley of amazement.  second was the foremost good fortune.  and third is the brain-dead megaphone.)  i read on the train ride into radiation town.  i read in the waiting room of radiation hospital.  and i read on the train ride home.  occasionally i write, but mostly i read.  sometimes i listen to music, but mostly to the sounds of the train and the noises in the waiting room.  and i know the machine by heart.  not the big, back of the machine, that sits behind me and moves the whole operation to my left and directly above me and down to the right, out of my line of vision, but that 'whole operation'... that's the part i know.  the part that sends out the invisible sunburn rays to me.  and i also know the lights on the ceiling.  and the clock.  and, of course, that little computer screen with the blue and yellow-turned-green line when i breath in, hold, and breath out (which i do nine times, unless the x-ray machine fails to take the x-ray, as it did yesterday and today, so then i do it ten times).  (i get two x-rays everyday so they can line me up just right so i don't get any unnecessary radiation where i don't need it.  i guess two x-rays per day is a lot better than unnecessary radiation in the wrong place.)

i have found the quickest path between the train station and the hospital.  and that is to walk through the bus parking lot.  on one of the first days i got spooked when a bus started its engine just as i was passing behind it.  there's nothing quite like going in for your cancer treatments and thinking that you might actually really get hit by a bus instead.

many days i go straight to the boys' school and pick them up on my way home.  and by the time supper is over i am somewhere on the scale of wiped out. this is not so different than the way it's been since my last round of chemo, and they say that radiation can be tiring, but i have happily tricked myself into not knowing if it's the biking/walking i'm doing or the cumulative effects of treatment that have me feeling tired by the end of the day.  of course, it's probably a combination.  i'm just really not keen on the idea that cancer treatment can get me down (at least not for more than a few days at a time), so i'll gladly take the exercise excuse and concede to just a bit of the treatment because i also don't like the idea that i'm operating at 100%.  this surely cannot be me at 100%.  after dinner last night i could not make myself do anything more than climb into bed with my book, even though that meant leaving greg with a house full of scattered toys and dishes and also a crying two year old.  i'm gearing up to be a more active participant tonight.  i'm thankful that i have someone who will pick up my slack.

there's a light snow right now.  there's snow covering the ground.  it's one of the colder days we've had here this winter. and the sun?  well... let's just say i have to get my tan artificially.