Thursday, May 30, 2013

strange carnival

what to say?  the last night before the fun begins.  i guess i got pulled out of the crowd and strapped into the cancer ride a couple weeks ago.  i sat there with no way to push that bar back up after it got locked into place.  there was that moment of feeling stunned, then quickly i realized i had a whole company of friends and family waving from the sidelines, with enthusiastic, if still tentative smiles.  i listened to the stories of the people who'd been on it before me.  i toyed with the idea that it might be a dream, but i started writing matter of fact emails about mastectomies and head coverings and in writing them sometimes realized, this is crazy, why am i thinking about any of this stuff?  as in, why am i thinking about this stuff?  why me, exactly?  i was hiding under pretty good cover, i thought.  but it doesn't matter now.  it is me.  it's my reality.  right now, that expectant moment just before that lurch which tells you the ride is starting.  that's where i'm at.  and the bar doesn't come up until it's finished.

and yet, as greg said... amazingly, life goes on through it all.  i am strapped to this cancer in one sense, and yet somehow blessedly free to take in each and every moment of my days, just as before...

case in point:



and if that wasn't enough to convince you how sweet life can be...


thanks friends.  you will help me get through this, waving from the sidelines, but more often i hope, in shared exchanges of the joy that exists in our lives.

Wednesday, May 29, 2013

update

(greg here)
a quick update on the whole cancer ordeal:  very good news came from a PET/CT scan showing no evidence for metastatic disease. hooray!

it is amazing how our feelings about cancer could change so drastically over the course of a week.  last week the diagnosis was stunning (in the taser sense) and devastating.  this week we experienced near jubilation at the fact that the cancer is just 'normal old cancer' as if all of a sudden it lost its teeth. still however, every once in a while (about twenty times per hour), the terror of it all strikes with the realization that this is by no means settled (nor has treatment even begun for that matter) and there is a long way to go with many pitfalls on the way.  those pitfalls are random and beyond anyone's control (e.g. the cancer may not respond to chemo... infection... basically any number of dreadful things), so they are better left to the corners of our imaginations while we keep our spirits up for the coming drudgery.  oh! to be able to just take a nap and wake up in 8 months with a healthy wife...

which brings me to this point:  life goes on!  amazingly we still have to do the dishes.  who knew?!

and that is the best part. (well not the dishes part, the life part).  we are still having great adventures with the boys, plus we've been able to have lunch together after all these appointments, and our friends have been doing a fantastic job distracting us from the aforementioned terrors.

below you'll find the evidence of our liveliness.

aside:  we've had to cancel our trip to the u.s. this summer.  the prospect of regan getting an infection, or a nasty side effect of chemotherapy while we are abroad is frightening.  here in dk she has access to 24 hour care if needed, and it has been made clear to us that if she starts getting sick we need to take it seriously.  if we go to the states and she gets a runny nose, we'll sit there wondering if we should spend $5,000 to go to the hospital when the cause could be just allergies.  so you see, we could make bad decisions based upon our lack of access to american healthcare.   we'll visit soon, just not too soon.

okay, nevermind all that.  back to the fun!      














Wednesday, May 22, 2013

up, down, up, down (and repeat)

if you ever want to experience the intense highs and lows of a roller coaster without leaving your front door, just go out and get yourself a cancer diagnosis.

it's really quite efficient at, on the one hand, making you completely astounded and humbled at how much love there is out there for you, what people are willing to say and to do to help you... honestly, i'm not quite sure i've generated enough goodwill to get back all that i'm getting back.  and it is the thing getting me by without driving myself completely crazy.  i'm very impressionable, turns out.  tell me things are going to be okay, i'll believe you.  tell me things aren't, and i'll believe that too.  

but of course, it's still cancer.  it's not the early kind either.  telling people in class yesterday, i received a couple hopeful assumptions along the lines of: 'but you caught it early, right?'  well, no.  i didn't.  but i still don't know just how late i am.  we talked to the surgeon who diagnosed me, today, and there is one spot, on one vertebra.  some calcification.  it could be normal.  it could be cancer.  they'd scheduled me for a PET scan on monday to get the answer, but in one of the most humbling gestures so far, it was moved to friday and the readers who read these things will be ready to read it without delay.  not a huge time difference in the grand scheme of things, but in the post-diagnosis, pre-treatment world we now inhabit, the weekends have been an exercise in holding our breath and averting our eyes and i'm not quite sure how many more of those i can sit through.  of course i can, and of course i will, if not this weekend, in weekends to come, but i'm getting impatient here at the start.  i've digested the initial news enough that i'm ready for more.  not ready, really.  i dread it.  but now i need to know.  what is this little vertebra above my shoulders up to?  we're waiting now to see if my newly-appointed oncologist will call me on friday with the results.  otherwise, i don't meet with her until the 28th.  i know, the 28th is tuesday.  patience, if it comes to that.  chemo is then scheduled to start on may 31st.  next friday.

well, that's it.  that's what i know today.  if you can think normal calcification thoughts, think those.  if you have secrets to getting u.s. netflix which has way more in terms of distractions than danish netflix, share those.  otherwise, you've done so much for me already, so just know that i am infinitely thankful to you.

Sunday, May 19, 2013

the post i didn't want to have to write...

okay, i am just going to say this because i still have too many people to tell and not a good way to tell it. i've composed this blog post in my mind for a month now, much longer than i should have, but i think it is just my tendency to jump right to the worst-case scenario.  and well folks, this particular worst-case scenario just became a reality for me on friday.

so... here it is: i have breast cancer.  blah.  i have to put the blah right after the reality because it's how i feel about it right now.  sometimes i feel less blah.  i was hoping to write this when i felt less blah, but well, i just need to get this out and done and i have time now, so, there it is.

awhile back on facebook i posted the new york times article, 'our feel good war on breast cancer' (and if you haven't read it yet, please do).  i did this knowing i was scheduled for my first mammogram, but not those overdone routine ones she talks about in the article (the kind that well, who knows, may have caught this in me a year ago, but maybe not), but a mammogram to learn more about a mass i'd found in my right breast one night while getting ready for bed.  just there one night.  not there the night before. not there that morning.  not there a second earlier than i noticed it.  well, of course it was.  it's big.  from my own little bits of research that i've done when i'm not too research-averse, it seems to put me at stage three.  that, and the fact that it's spread to at least one of my lymph nodes.  this i know after having the mammogram, an ultrasound, a biopsy, chest x-rays, and an MRI.  what i don't know yet is if it's spread further.  on friday, the day i got the news, they did blood tests a CT scan.  i get those results next week.  and then probably they tell me what stage it's at.  maybe it's not stage three.  maybe the stage doesn't matter so much.  just that it's found now and i can start to treat it.

the current plan is 8 rounds of chemo, with a span of three weeks in between each round.  then surgery.  then hormone blocking drugs as mine is estrogen-receptor positive (and HER2 normal).  our seven week trip to the u.s.?  i don't know about that.

we haven't told william or henry yet.  of course william will understand to a much greater extent than henry.  henry still nurses and i am beginning to wean him because of this.  i know extended breastfeeding isn't everyone's cup of tea, but it worked for us.  it was a wonderful way of bonding with and comforting my children (i can stop a crying child in 2 seconds flat... i'm going to need a new strategy) and well, i'm so glad i was able to do it for so long but my boobs were probably so tired of it that they brought this whole thing on themselves.  just kidding.  in the last 48 hours i've pinned the blame on so many different things, but not nursing.  weaning henry now is just collateral damage in this whole unbelievable reality.

but i'll get past the unbelievability of it all.  i'm anxious, really anxious to get through these initial feelings.  i didn't think i would be asking, 'why me?'  but i do notice myself passing people smoking cigarettes, eating food they bought from 7-11 (those are big here), and wondering, in a completely objective non-malicious way, "huh, it's so interesting how completely random cancer seems to be."  but i guess, in a way, that's me wondering, 'why me?'  but i've told my family about this and i can hardly believe how many of my own family (and granted, there are a lot of people in my family) know someone, some young person, who has had breast cancer.  it's making me feel like it's actually not so unusual that i got this.  there are plenty of women in their 30s and 40s with breast cancer.  and everyone i've heard about so far, has gotten through treatment.  maybe my family is kind enough not to tell me about the ones who don't.  thank you for that!

i just read an article today from a girl whose mother was just diagnosed with cancer.  the reality for that family feels so much different from my own.  maybe it's because they have been getting telephone calls and i have been getting emails.  i can see how telephone calls would be hard right now and i have the advantage of prohibitively expensive international rates.  but emails.  those are different.  i can read and answer them in my own time, when i'm not feeling blah (or, if you're so lucky, you get one of my 'blah' responses).  the emails i've gotten with their positive messages have lifted me up so much.  maybe i'm easy to please in that sense.  words have a huge effect on me.  especially the good ones, so i know you'll get busy and i know life goes on (it better!), but if you think of it, if you're wondering about me, then please, by all means, send me an email.  and please, by all means, send greg an email.  i don't know if he wants them and i don't know that he'll always be very good at responding, but i do know i don't want him to get forgotten in this adventure/journey/mess and in many senses he has the harder job than i do and i won't always be able to give him the support he will need.  

i also have a few things i'm curious about but don't know that i necessarily have time to research, if you somehow have more time in your day (bearing in mind that i don't even have a job and my children have childcare... so i pretty much have more time in the world than anybody) and you want to help... i want to know what...

foods i should eat
foods i should avoid
vitamins i should take
vitamins i should avoid
exercise i should do
exercise i should avoid

and

can i ride my bike to and from chemo or should i get a ride?

and, do you have some...

words of wisdom that will make me feel brave?

and are you...

a funny person?  because i really appreciate humor right now.

and have you heard of the...

newest scientific breakthroughs that don't mention how screwed i really am?

also...

anything else you can think of that you think will help because i'm not wise like you.

also, i want to mention, because i've asked you to email and to do all kinds of research and i will appreciate all of it, (even if you do none of it), i know i will because i've already felt all the love from the people i've told and it feels good, and so far i've been able to write everyone back and actually tell them how much i appreciate it, but sometimes, even without cancer, emails fall through the cracks or i put them off, and i'm afraid cancer isn't going to somehow make me a better emailer.  so, i apologize beforehand if you ever don't hear back from me, but know that i am writing you back in my head to say thank you.

and for listening to me go on and on right now, in this blah mood that i'm in... well, thank you for that too.  as i said in my email to my family... i have so much to be thankful for right now.

Saturday, May 11, 2013

back to castles

back to frederiksborg slot today... 





not inside today though.  just to the gardens. we were here sometime during the winter and thought, we should come back when it's warmer and walk around the gardens.  


just to show you how trees are pruned in these parts...


to the gardens...


another tree...

the baroque garden...





a little henry...

w: "do you need some help?"   h: "okay."


henry really loved the baroque garden the best...





william said, 'when you do the blog tonight, make sure to put the egg picture in it'....





the other day william told someone, 'i used to be a paleontologist.'  so today when he told us he'd found an ancient footprint, we had no reason to doubt him...


checking out the cave made by the huge rhododendrons...


inside... it really is somewhat amazing...


the strange beeches you find around here.  this one with four complete rings made by the branches...


helping an ant out of the water...


greg said, 'isn't it amazing to be in a forest where all of the leaves are brand new?' and it really was.



swan nest...




the crows in denmark... have you seen them before?  hooded crows i suppose...


little one... back at his favorite garden...




when we finally ventured back to the bus station we had to wait around, so we watched the trains come in from above...

our day.