the love we left behind

It’s good to be home.  But it’s bittersweet in so many ways. There are many things we miss about Miami but first and foremost is the amazing community of homeschoolers that we were so lucky to fall in with.  Not long after we got to Miami we discovered the Global Field Academy and the families there welcomed us in with open arms.  Not just open arms, open hearts, open minds and lots of love.

The girls made friends for a lifetime.  Field trips and adventures, play dates and incredible new experiences.  Every moment bolstered their confidence and made us fall in love with our fellow humans again and again.  

It was fun to watch our country girls fall in so easily with these city kids and see these city kids completely embrace our country girls.  It was like they couldn’t get enough of each other. They showed us how to dance, we showed them how to knit. And when we left there were many tears (mine too) and promises to make visits again both here and there.  We truly intend to keep these friendships alive.

Thank you GFA for being our light in the storm, you don’t know how much it meant to us.  We miss you all.

sunrise

There is no easy way to say it.  The CT scan didn’t bring good news.  The large tumor in in Andy’s left lung has continued to grow.  Because he had progression while on the medication he no longer qualifies for the trial that we have been doing here in Miami.  We’ll meet with the doctor again this Friday to get final details and to see what advice she has for going forward. 

What to do with this news?  How are we?  I’m not sure at all.  Fumbling, angry, heartbroken.  But not without hope.  And this is where you come in.  For some reason it’s hardest for us when it feels like people are feeling sorry for us or giving up.  Please don’t. We aren’t.  We aren’t feeling sorry for ourselves or giving up. 

This morning we woke the kids up at 6:30 am and drove to the beach to watch the sunrise.  It was fresh and wild and every color of hope you could imagine.  Then we went out for coffee and pastries just like everything was wonderful.  Because in that moment it was.

fight song

Despite our best efforts to expose them to so much more (or maybe because of? What’s wrong with a little Queen, Bob Marley, and Taj Mahal?), our girls are fully into pop music these days.  And this song (in addition to being the Olympics theme song and played constantly during those 2 weeks) gets played on a continual loop in our house (and thus in my brain).  I think it has become the soundtrack of our life here in Miami.  Well that and Camila Cabello’s Havana because you can’t escape that song here!

And we tend to frame this road with cancer as a healing path and not a fight.  It feels better that way, to us.  But yet, sometimes there is no way around the fact that we need a “fight song” a “take back my life song” a “prove I’m alright song”.  I guess this is it. 

So, this week Andy’s test results came back and they were good. The MRI of his heart showed that the function is back to normal (indicating it was the drugs not the tumor causing a problem) and that the tumor itself has not yet invaded the heart tissue.  His doctor has decided to put him back on the medications at a lower dose hoping that his heart can handle that.  He’ll be watched closely.  The MRI did not show us if the tumors in his lungs are continuing to shrink.  For that we have to wait (again) for the next CT scan which is scheduled in a couple of weeks. 

He is feeling tired in many ways. We all are.  There isn’t a lot we can do about that, other than crank this little pop song and move forward.  So onward.

you too are stronger than you think

There are two things we hear a lot:

1.  You guys are so strong…I don’t know how you do it…You handle this with such grace.  Etc.

and

2.  It’s just not fair.  This shouldn’t have happened to you.

To number one I want to say this:  I truly believe you would do the same thing.  We have no super powers.  When you wake up the day after a doctor has said “you have cancer” and your life is forever changed, you have no choice but to eventually get out of bed.  I mean you can only stay there surfing endlessly through Netflix movies for so many hours before the kids want to be fed or the cat litter stench becomes so overpowering you find yourself thinking about that more than cancer or your concerned friends come over and threaten some kind of energetic cleansing ceremony that you really don’t have energy for.

Until the moment someone is actually dying, there is stuff to do.  Someone probably still has to work, and everyone needs to eat, and the toilet gets used (probably more often, if feeling scared scares sh*t out of you) and so needs extra cleaning, and there will be more appointments than you can ever imagine and all that driving will mean your car needs some kind of maintenance and if you have kids they’ll be needier than ever and at the end of the day there will be like 248 emails and texts to return.  (For the record, in the moment I am actually dying, my to-do list will be wiped clean so as to not distract me from the task at hand, and don’t plan anything otherwise or I’ll haunt you forever.)
But seriously, you’ll get up and put food on the table (there is no shame in popcorn for dinner) and you’ll take the compost out when someone finally says “what the heck is that smell?”.  You just will.  You don’t really have a choice.

If there is any “secret” to our strength it might be this:
I think by nature we are both wired to, most often, default to hope and wonder, not depression and darkness.  I know that’s not everyone’s story and we see our privileges clearly.  We also don’t hesitate to employ drugs (think prozac) and therapy and any other support we can think of (massage, wine, exercise, chocolate, mindless movies etc.)  You can do this too.

I also think we’ve made a conscious choice to proceed through the days (months, years) following that dreadful news with a kind of purpose.  A purpose to keep loving each other and being as kind as we possibly can and to keep finding joy in each moment. 

When your heartbreak comes, know that you will get up and put one foot in front of the other.  Not every day, but enough.

Thank you for thinking we are strong.  We are.  And so are you.

Which leads me to number two, the “it’s not fair, and why aren’t you angry” sort of comment.  Here’s the deal.  17 totally innocent kids just got shot in a school 42 miles from our home here in Florida and their families are grieving in a way no one should ever have to grieve.  And everyday that we drive to the clinic we see sad, slumped bodies lying in dirty bedding under the overpass.  People with their entire world packed up in a stolen shopping cart who have hopes and dreams and probably children, or at least parents, some where in the world.  And we just read an amazing kids book (Refugee, check it out in the sidebar) that follows the based-on-true stories of three refugee children from Germany, Cuba and Syria. And these people live war, and starvation and terror every day for years on end and there is nothing they can do but try and run for their lives.

We aren’t angry about Andy’s cancer because everyone has something.  Suffering is universal.  Some people have to suffer their entire lives.  Some of us never find love.  Some of us can’t forgive our parents.  Some of us work ourselves to death.  Some of us die of starvation.  Starvation!

This gives us some perspective. Andy has cancer and it’s terrible and scary and heartbreaking.  But we still laugh with the kids and drink coffee in the morning and watch the parrots fly over in the beautiful blue Florida sky.  We have resources enough to take them to rent rollerblades and eat McDonalds (ok, we have resources enough to feed them better than McDonalds, but what the hell, it was only once, I swear). We still see the kindness in others and feel really psyched when a stranger makes room for us to merge into the long line of traffic on the interstate on-ramp.

These things are important and worth noticing.  They make up the beautiful moments of our days.  In my opinion they are worth spending more time with than our little thoughts about why someone can’t put the butter knife in the sink instead of leaving it stuck to the counter, or who took up two freaking parking spaces in the completely crammed parking lot at Whole Foods.  C’mon guys, let’s all settle down a little bit and remember:  Be Kind.  Everyone you meet is fighting a battle.
It may be cliche, overdone, and found on cute little signs sold at TJ Maxx.  But still.

This week Andy got pulled off the trial drugs, again.  He had an echocardiogram which showed a decrease in his heart function and since we aren’t sure if it’s the drugs causing that or the crazy tumor next to his heart, he had to stop taking them until further testing can determine what the heck is going on.  Up, down, up, down… and we wait. In the meantime we plan to go check out some birds at Corkscrew Swamp Sanctuary and probably eat some junky food and look for cool shells on the beach.  And if you look at us you won’t know that our hearts are breaking because we are still noticing all the beauty in the world and it makes us smile.

kickapoo love

Yesterday while I was in the living room working, the kids called out that a package had arrived in the mail.  It was long and slender with a return address of “The Goofballs at the Kickapoo Valley Reserve”.  We were intrigued.  When we opened it up we found a photo poster depicting the images above.  There were some tears.  Here’s the story as I know it.

On a January afternoon a couple of weeks ago, a bunch of our Kickapoo friends trekked out to one of our favorite places on earth to show our family some Kickapoo Love.  They all wore red, they stomped hearts in the snow, they held up letters of love and they even found a guy with a drone to capture it all.  I’m sure there was plenty of laughter and fun.  Can’t you feel it?  We sure can!

Even when the world seems dark and scary there are people out there holding up the light for you.  Giving you strength and confidence to carry on.  We feel the love from that little valley flowing like the river right here to the city of Miami.  Filling us up, carrying us along.  We miss you all and can’t wait to come home.

Cheers.

with photo credit to Jackie Yocum and Garick Olerud

crazy critters of the sea

 Blue Button Jellyfish

 Nudibranch “Sea Slug”

Burr Pufferfish

 Kite Boarders

 Sea Sponge

 Sail By the Wind Jellyfish

 Portuguese Man O War

Are We Still Normal?

Are we still normal?  I feel that question a lot.  It underlies the “How are you guys doing?” and “How is Andy feeling?”.  I’d want to know too, if I were you.  Our fragile human-ness wants things to be normal, even when they aren’t.  Normal is comforting and boring and easy to take for granted. Normal can go unnoticed until someone’s life explodes with things we all fear and then we really want to know: can there be normal in all that craziness?

So let me assure you.  We are still normal. 

 

I still drive Andy crazy when I cook (Disclaimer:  he’s the cook, I’m just the substitute) because I am a disaster in the kitchen.  Things eventually turn out tasting fine (mostly), but not before every pot is used, ingredients litter the counter (the lids now missing), something on the stove smells a little too hot, and the fridge door is standing open.  He calls me the kitchen spaz (even if that’s totally not PC) and I mostly don’t take offense.  Until one of the kids says:  “seriously, we are having this for dinner?”.  Sometimes then I lose my kitchen cool.

Andy still drives me crazy with his procrastination.  I mean seriously, an email that I could shoot off in about 30 seconds takes him 10 days to just get around to thinking about sending and that’s not even counting the agonizingly long time it takes him to actually write it.  And dude, just let me organize those appointments because I’m super efficient and I can stack them up in a way that doesn’t make us have to move the car 8 times and walk back and forth between buildings 45 times AND drive back in later in the day for the last one.  And yes, I can see you are annoyed and whispering “bossy pants” kind of under your breath. 

And the girls can never agree.  I think it’s a secret arrangement they have behind our backs. They probably lay in bed and practice it at night.  It must go something like this:  “If mom says, hey, do you guys want to stop off at the park on the way home…make sure one of us says YES (very enthusiastically) and the other of us says NO (in their most whiny voice).”  Or if dad says, “Even though it’s not Sunday I’m making pancakes for breakfast!  Make sure one of us jumps up and down yelling excitedly “Pancakes!” and the other of us says in our most grumpy voice “I’m not eating pancakes again!”.

And we still have to clean the house and find the lost library book and fix the flat tire on someone’s bike.  Oh, and the grocery.  That’s normal too except with the extra bonus of this being Miami and it takes 20 minutes to drive 1.5 miles in traffic and then when you get there you can’t find a parking spot and the girls starting fighting over who gets to push the cart.  And then you get inside and there is NO room to even move that cart because everywhere you go in Miami there are 150% more people in any given space than there should be.  And the kids are so wide-eyed at all the 6 inch heels and dreads and makeup and nails and dogs in purses and leopard print spandex that they won’t let go of the cart and so I’m totally STUCK between the mangoes and the avocados.  Wait, is that normal?

Suffice it to say, we move through each day with laughter, frustration, impatience and love, just like you.  Yes, we may have moments of raw fear, deep fatigue, mounting panic and utter sadness.  That’s part of our normal, but not all of it.  And we make sure to embrace the normal wherever we find it.  Here’s hoping you do too.

friends

The doctor’s decided to give Andy a week off the trial medications to see if his kidney function numbers would come back down.  After about two days off, he was feeling much better (and his numbers were coming down) and our friends arrived!  It was good timing, Andy had energy and a dose of home, laughter, and friendship was just what we needed to lift our spirits.

We spent some time at the beach and we drove down to the Everglades and saw lots of great birds, fish, alligators and American Crocodiles (!).  The kids built forts and wove palm frond mats and set up a “store” on the sidewalk and sold their goods.  The adults made loads of great meals, talked and laughed, took walks around the neighborhood (to scavenge cool wood and plants from roadside compost piles) and filled up on the spirit of sweet friendship.

Yesterday Andy and I went back to the clinic to see what the doctor’s had decided about his case going forward.  After lots of back and forth with the drug sponsor it was decided he can stay on the study and that we could reduce (slightly) the drug that seems to be causing his kidney some issues.  So treatment started again yesterday, it won’t be until next week that he adds the second (potentially problematic drug).  This week we hope we’ll just see some stomach upset and fatigue.  It’s not great, but it’s treatment and we’ll take it!

Having friends from home made this life in Miami seem even more surreal.  Our two families are out of place in this big city, but we made the most of it and gave the neighbors plenty to talk about too.  Now they are on their way to the Keys and we are filled up with love from home and ready to face another week.  Safe travels back to the Kickapoo sweet friends!

this new year

Christmas in Miami was different but delightful.  Elsa got the bow of her dreams (made by Andy), the Gorrill’s visited and it was so great to have family and we spent Christmas afternoon on the beach with new snorkel gear! Sadly, everyone left the day after Christmas and it was back to business with the start of the second drug in Andy’s chemo combo. 

Things did not go as we had hoped.  Andy started the new medicine on Wednesday and by Friday was feeling pretty fatigued, spacey and overall not well.  Saturday am found him weak, almost passing out, so I called 911 and tried to prep the already freaked out girls for the arrival of the EMT’s.  Iris, understandably, worried aloud about all the terrible things that could happen, while Elsa made herself a waffle and ate it (different kids, different coping).  Andy maintained consciousness (thank god) and the EMT’s arrived calmly and without sirens (thank you, guys).  They were big intimidating Cubanos who couldn’t have been sweeter and more kind.  One guy sat next to Iris and talked to her about how scary this was, how strong she is and gave her a fist bump on the way out the door.   Then we followed them and Andy to the emergency room.

When you move to Miami and your in-laws have gone home and the next friends haven’t arrived and you know no one, well, the kids get an intimate look at the inside of a big city emergency room. 

Andy’s vitals checked out normal at the ER, but some of his blood levels were off a bit and because he is on a clinical trial they have to monitor everything and the ER nurse looked at us kindly when we mentioned going home and said “don’t get your hopes up, honey”.  Sure enough, 2 nights and 3 days later we emerged, exhausted and worried but mostly the same as when we went in.  We don’t really know why Andy got so weak and woozy or why his blood levels (kidney function) aren’t where they are supposed to be, but we can only assume it’s the drugs causing some havoc. 

Andy is back home now and feeling still tired but not at all weak or woozy.  The girls watched more media than I’d ever be comfortable with under normal circumstances, but when your dad is in the hospital and HBO is running a Harry Potter movie marathon and the hospital has HBO, well screw screen limits (and also screw healthy eating and bedtime and changing your underware).  At one point when they weren’t glued to the tube I did debrief the chaos with them and I think they are ok.  Because what they witnessed was super scary but also empowering.  Because people were kind and competent and their mom held her shit together and so did their dad (of course) and actually so did they.   And now we know what it takes to call 911 and go to the hospital in an ambulance and spend 4 hours in the ER and then 3 days in the hospital in a crazy city with traffic and sky scrapers and palm trees and nothing familiar and no friends or family to help.  Dang, we rocked that thing.

In seriousness we are still freaked out.  We don’t know what any of this means.  If Andy’s body is revolting and not tolerating these drugs, he might not be able to stay on the study.  If it’s not the drugs and it’s the cancer causing problems, well that sucks even more.  We’ll be back at the clinic tomorrow for more testing and to talk with the study doctors and hopefully get some answers. 

And by the way, 2018…NOT FUNNY!  

Wishing you all a happy and healthy new year!

adventures in miami

We made it to Miami!  We are settling into our house and neighborhood nicely but feeling overwhelmed by the traffic and city just a few blocks away.  (I didn’t photograph any of that!)

It’s very green.  We haven’t tired of walking around the neighborhood admiring all the crazy tropical plants, and stucco and tile houses.  Elsa loves all the lizards.  The air is warm, but smells like city.  Sometimes it seems kinda quiet, most of the time it doesn’t.  Certainly we are in environmental and cultural shock.  Country fish floundering in a big cosmopolitan city.  Luckily Andy and I can call on all our various pre-kid travel adventures and at least act like we know what we are doing.

One of the first things we did was take the kids to the urban “farm” we found when Andy and I visited a couple weeks ago.  It’s just a neighborhood over, in Little Haiti, and it’s funky as all get out.

They rent rooms in the airb&b treehouses.  They grow veggies and eggs and honey.  They rescue animals (the potbelly pigs were the most fascinating) and they have volleyball games and vegan potlucks a couple times a month.  We’ll definitely do some hanging out there.

Yesterday after school and music practice and some work for me, we ventured out to an urban state park, just a few miles from our house.  Weird to have acres of wilderness in the city, surrounded by highrise skyline.  But we revel in nature where we find it and there was plenty to admire.  Thousands of tiny hermit crabs, a lightening whelk, jellyfish and even stingrays in the lagoon (the girls weren’t so excited about the purple flag beach warning that means “stinging marine animals”). 

This morning we walked to the farmer’s market, a few blocks down along Biscayne Avenue with non-stop traffic whizzing by.  But we found organic veggies, and homemade kombucha amd tempeh, fresh squeezed tropical fruit juices, crusty fresh bakery breads and even free range organic eggs (for $7/dozen!).  There is so much to discover and we try to take it in in small bites, retreating back to our little house and fenced backyard to chase lizards and put out food for the feral cats, so that the world doesn’t feel so strange and new.

I think it feels like a vacation with a lot of uncertainty and fear and worry mixed in.  I know we are so lucky to be here.  To have the resources to “move” to Miami to get the best care we can find.  We work hard to count those blessings.  When the girls are in tears missing home, missing friends, missing pets and bickering with each other because they are just uncomfortable inside themselves, I remember this is hard.  Hard for all of us.  And I remember that there are some things we can control and some things that we can’t.  And it will always be like that.  And I continue to pray that this path is making us strong and resilient and full of compassion.  And I remember, with so much gratitude, all of you who send love and support our way.