right now

It’s been difficult to write.  It’s hard to come here with what is honest.  These photos show some joy and normalcy in the storm.  Please know these moments exist too.

In the past few weeks Elsa turned 9.  She was supported and loved by so many people.  Friends hosted her party, grandparents came, the sun shone and Andy was able to make it to celebrate with her for a couple of hours.  She is a glorious girl whose light shines for us even in dark times.  We rest in the fact that her spark will illuminate her own path as she grows through all that is beautiful and hard in this life. 

And the last month has been full of dedicated play practice for our two.  Daily they have gone to Viroqua with a kind and loving friend to put in hours on the stage readying for the big weekend, which is now.  I have not seen a wink of it all aside from a few photos sent by friends.  I hope to attend the final performance this afternoon to support these hardworking actors!

Andy and I stay home each day.  Hours are filled with chores and naps and visits from many friends and family.  As you might imagine some days (and nights) are harder than others.  We work daily to manage Andy’s discomfort, to provide him restful spaces, to temper our grief by staying in each moment.  Andy is on oxygen to help with his breathing, he takes pain medication around the clock, he struggles to eat well, and sleep well and often feels restless.  He continues to receive immunotherapy treatment at Mayo, with a scan coming up again in a few weeks.  We are unsure what that will bring.  We have frequent and difficult conversations with each other, with the girls, with our parents and friends.  These conversations bring clarity and relief and loads of sadness. 

We have no idea how to do this.  We fumble through with as much strength and grace as we can muster.  Sometimes that looks like these photos and sometimes it looks like a gaping big hole of darkness.  We are not alone though.  Not by a long shot.  Everyday we are surrounded by the love and support of this dearest community.  There is always food in our fridge, someone to stay the night if we need, rides everywhere for the girls, lawn mowed, shoulders to cry on and plenty of moments of light and laughter too. 

We’ve made a bed on the porch for Andy and he spends hours outdoors soaking in the beauty of this amazing life.  Because, like every spring, the bobolinks and wrens fill the mornings with their persistent songs, the apples burst forth with blooms and bees and hummingbirds, and the fresh promise of nature’s renewal fills us with hope.

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.

June

Still no news from Mayo but in the meantime we are filling our moments with recitals and the smell of late-blooming lilacs outside our bedroom windows and more strawberries than we can even eat in one sitting. 

While we feel the shadow of cancer looming we are sure not to miss the rainbow (double!) when it ends right in our own pasture.

I’m not sure what else to say.  News must be coming soon.  We try not to be waiting, but still we are.

But these moments of waiting don’t go unnoticed and they are full of beauty and love.  We hope yours are too.

waiting

(beautiful trip to Madison’s Olbrich garden’s this week but forgot my camera so please excuse the iphone photos)

It’s been 4 weeks since Andy’s surgery.  He is feeling well and we are soaking up spring like sponges (an apt metaphor for the continual spring rains around here), but still we are waiting.  Sometimes the wait feels heavy.  What will the genetic tests from Andy’s tumor show?  Will they show an obvious match to some trial that has local availability?  Will they show no match at all?  Will he match to a treatment that is more tolerable than the last, or will it be just as tough?  Will we need to travel/relocate for a trial?  Will he just have to fall back on some drugs that are FDA approved for sarcoma without much in the way of strong response statistics?  Will our entire summer be filled with treatment and recovery, or will we be able to camp and take some of the trips we’d like to plan?

I’m a planner (no big secret) but I’ve learned ways in the last 2 years to curb that habit.  For one it doesn’t do a whole lot of good because we’ve learned life’s biggest lesson already:  What’s around the next corner is unknown. The stories we tell ourselves about the future will have more variables that we can ever imagine.  

And secondly, I’m much more contented and peaceful when I’m here in this moment, rather than relentlessly thinking about the future.  I think this would be the case with or without cancer.  Yes, with cancer the future can look scary, but we can still make ourselves crazy thinking about the future when we are perfectly healthy.  Believe me, I did plenty of that for years, so this is a lesson well learned.

But in ways I miss that planning, maybe more so in this season than any other.  The plain truth is, my littlest self gets envious sometimes.  This is the season when friends and family plan their vacations, sign their kids up for sleep away camp, invite each other to weddings and summer solstice parties.  When people ask what we are up to this summer, I have to say “I don’t know.”  Because I don’t.  We have NO plans.  Yes, the kids are signed up for day camps and swimming lessons but with the knowledge we may need to pull them out.  I haven’t signed them up for the week-long family music camp we long to go to because I don’t know if we can, yet.  We haven’t mapped out a boundary waters trip or put camping weekends on the calendar.   I’m not venting this for sympathy but rather for perspective.  Honestly I am so thankful that Andy is here in good health facing treatment.  But these weeks of waiting are strange, we both commented this morning that it feels so weird to not know what the summer will bring.  Will Andy be in the garden or will he have to stay out because his immune system is tanked?  Will he be biking?  Should we get that long-eared pup I am longing for or do we need to hold off because we might not be home much?  Iris asks and asks and asks for her riding pony and I softly explain that we need to wait and see.  “Why?” she says.  “Because we aren’t sure how Papa will be feeling this summer and I just can’t take on another thing.”  I hate that answer.  But it’s true.

So we wait.  Within a week or two we should have some answers, but it seems never as many as we expect.  Information always brings more questions to ponder.  

But I still have this long view. Meaning that I can look back on today and know that it was good.  I noticed most of the moments, so the day felt long and full.  Not exhausting, just full.  Tomorrow will be another one of those days.  These moments right now, while I sit trying to find explanations and listening to the girls playing in their room and watching Andy chasing calves around the pasture while the night air grows cool and dim, are beautiful and almost infinite if I pay close enough attention.

So for now. This.

eight

Elsa Mae turned eight this week.  She wanted a star-wars, roller skating, dragon party.  And I think that’s pretty much what she got.  She was very pleased with having her parents, grandparents and 8 friends at the roller rink, and she skated til her legs were sore.  Then off to the park for (Chewbacca) cake and ice cream.  A few days later it was a celebration on the lake at Grampy’s.  The new neighbor’s invited the girls into their very warm pool so they got to swim and load up on Grampy’s homemade cookies (and ice cream again).  She was smiling from ear to ear.

And then maybe best of all, when Nina and Poppy headed home for Minneapolis they left little Phinn behind so he can try out being a farm dog.  The girls are smitten.  Aside from chasing the cats he is doing great, and even though he’s not big and floppy (and I’ll eventually need one of those), I have to say I’m warming up to him.  

Elsa Mae. Sunshine in our life.  Your humor and laughter and strong determination delight us all.  Your generous, kind spirit so often leads the way.  You are a joy to know and love.  We are so blessed to have you in our lives.  Happy eighth birthday sweet girl.  We love you so.

Lily Louise 2001-2017

 

We returned home from the hospital on Wednesday after a smooth surgery for Andy to find that Lily (who had stayed home with my dad) was no longer able to get off her bed on her own.  She wasn’t in pain but it was clear she was ready.  So yesterday morning we called a friend/vet who agreed to come to our house to help her pass away.  Peacefully and gently she went with all of us holding and stroking her and telling her how much we loved her.  It was sad and beautiful and I’m so grateful she had us all by her side.

16 years ago we added her to our family of 3 (Andy, Frijole and me).  She was 4 months old, a border collie/coon hound cross.  Unlike Frijole who hardly ever got himself into trouble, Lily ate carpet, ripped open her belly on the barb-wire fence, destroyed many books and never got along well with other dogs.  She was quirky from the start.  She went crazy when we sang Happy Birthday to her.  She would let loose her hound dog howl at anything out of place, for example the laundry basket that got left in the yard.  She was unsure of the girls until they stopped toddling but as soon as she was sure she could trust them (and who can trust a toddler?) she loved them fiercely.   She loved to swim, was excellent in the canoe (riding rapids like a pro), and could find a stick you tossed in a brush pile a mile away.  She joined us on almost every road trip or camping adventure we ever took.  She slept under the covers in our bed until the girls came along.  Then she settled for sitting on my lap while I drank my coffee in the morning or getting belly scritches by the fire.  She was so, so loyal to her pack, which included us and a very few close friends and family.  Everyone else needed to steer clear.  She got shaky when she was scared and that was often.  Mosquitoes and flies were the scariest of all.  On camping trips she spent more than her fair share of time in the tent avoiding them.  

She was the light of Iris’ life from the beginning.  One of the first things Iris learned to say was “Dig it Ya Ya!” which would send Lily flying into snow piles to dig furiously while Iris laughed and laughed.  The two of them had a very special bond and I know that Iris (especially) will miss her for a long time.  

The house feels empty without her, but it’s hard to feel incredibly sad about an amazing dog life that lasted so long.  We’ll miss her soft ears that smelled so good, we’ll miss her chasing the cat around and laying by the fire for endless hours just waiting for us to lay down and snuggle her which we did so often.  We’ll miss her quiet company, her toenails on the stairs, the way she ripped up the grass and got crazy outside.  We’ll miss her deeply.  But we will love her forever and will never forget how lucky we were to share her life.

 

The last two weeks have been busy.  Several trips to Mayo clinic but also Easter egg dying, plenty of yard work, sheep shearing, play dates, school projects, birthday parties and Earth Day road clean up too.

It’s funny how even with the knowledge that the time has come again to do something decisive about this cancer, we can go about out days holding fear and contentment together as one.  After two and half years it’s difficult to separate the two.  I’ve learned to live with both.

Tuesday we go back to Mayo and Andy will have surgery to remove one of the lung tumors for DNA sequencing in hopes of finding a trial drug.  We expect the surgery to go smoothly and the recovery to be fairly quick.  Then we wait on testing results.  We’ll keep you posted.

In the meantime we’ll continue to love this life.  Because waiting really doesn’t make sense when what we have is the moment now.

april

Old dog in the sun

it must be her last spring.

No chasing butterflies or balls

no splashing in the water.

Just sitting

staying close to her people.

Perfectly content in these soft, fine moments 

of April.

Andy’s scan of last week showed continued growth of the lung tumors but no new tumors elsewhere in his body.  We learned this on Friday and sat with it all weekend.  While we worked, while we played, while we slept.  Among the weekend’s moments there was joy and there was fear.  We know this path, we can walk it steadily, most of the time.  We turn to each other and need not say a word.  The girls seem to hold the knowledge like mist.  We watch them carefully and pray for strength.

family

Andy’s brother and two children visited us this weekend.  Hours and hours were spent in the shop, carving, pounding and carving some more.  It was a prefect place to spend a rainy couple of days.  The kids had a blast, Andy and Matt got to hang out, and I did plenty of knitting by the fire.  Sweetness.

road trip part four: best friends and another birthday

This is the last of the photos, I swear, but I couldn’t leave out the the highlight of the whole trip for the girls:  Best Friends Animal Sanctuary.   Just outside of the tiny town of Kenab, Utah this sanctuary is like nothing you’ve ever seen.  Inhabiting its own beautiful canyon, the 3,000 acres is home to over 1,700 animals, all rescues.  We had planned only one day of volunteering, but the girls couldn’t get enough (and they were only old enough to help in Cat World, you have to be ten to move on up to Dog Town!) so we stretched the schedule to accommodate another day of helping.  Because one really can’t get enough time to stroller cats, walk them on leashes and entertain them with endless cat toys (all in the name of socializing of course). It’s really an incredible place, we’ll be back one day I’m sure.

And then last weekend it was another birthday celebration.  We spent a night in Madison where the girls and I went with friends to see the Lion King at the Overture Center (totally amazing, I think there are still tickets!)  Then my birthday morning request of a tour of Olbrich Botanical Gardens (also incredible!) and then home to a cake with not quite enough room for 44 candles.  But still, it was all sweetness.  I am so blessed.