out of the storm and into...?

So last night, Jon and I sat down to have a writing date together - because we both had things we wanted to get out - and he wrote his post "we made it!" and I wrote, well, this one...  As we read each others posts, I laughed (and cried) a little at our different ways of writing and processing - his ability to always see good, and my willingness to deal with the shadows - and then proclaimed that I couldn't post mine, because it would make Team Douthit seem a bit bipolar.  He reassured me that despite their differences, they're both true and accurate for both of us - his is true for me, I'm celebrating being done with this phase and into a more spacious place, and mine is true for him, although with different emphases which maybe he'll expand on at a different point in time.  So I'm sharing it anyhow - we're not on different pages, this isn't my story versus his, nor is one of us healthy and the other avoiding processing nor wallowing in processing.   We're writing the same story, just painting different details, in our own unique ways.

--

I watched an episode of a medical-drama TV show (which shall remain unnamed, oh the shame...) today where a young woman presented in the ER following a serious car accident, with catastrophic injuries - but when she came in, her adrenaline was so high that it kept her from being in pain or her body really feeling the impact of her injuries.  When her body finally relaxed and calmed down, only then was the full impact of her injuries known.

I have no idea whether this is medically accurate or not - Seattle Grace is never my standard for medical accuracy - but I do know that, emotionally, this is true for me.  As long as I'm running on adrenaline - as long as I don't stop moving - I don't feel the full extent of my wounds.

We finished the final round of chemo on January 31st.  Last week, we came through (hopefully) our final round of neutropenia and all it's worries, risks, and fears. Hallelujah! And as of this past Monday, Jon is back to work (in the office!) full time again.

For a few short weeks, our lives return to "normal" as we wait for the final PET scan on March 8 (results on March 9), to see if we're "done done" or if we go back into the ring for more treatment.   But we're learning to celebrate the moments of victory, even in the grey.  Done done is relative of course, because when are you ever fully free from the fear that the cancer will return?  And when are you ever fully in irreversible remission?  But for the time being, that is our marker.   So, now we're in this weird waiting, holding, celebrating, processing, new "normal" pattern.

Honestly?  It's been a lot rougher than I want to admit.  This week has been emotional - up and down and all over the map.  Celebrating, grieving, relief, exhaustion.  I've felt more fear, anxiety, and panic than I have in months.  And yet life is back to normal, right?  The risk of Jon ending up in the ER, the stresses on our children, the heavy-hitting chemicals being pumped into my husband's body, the sleepless nights - they've all gone away or greatly diminished.  And we're slowing down, returning to normal.

And all of a sudden, all of the metaphorical junk that we haven't processed or dealt with in 5-6 months - all of a sudden, it's hitting me square in the face.  My adrenaline isn't pumping - I'm not in survival mode - and now I'm feeling all the aches and anger and wounds and just.how.much we went through that I haven't felt in the need to just survive and make it through.  Now, I'm feeling... the whole breadth of emotions. [Insert cute kid pic to make sure you know that this includes happy emotions too...]

When you're in the midst of it all, you don't really think about whether or not your spouse will live or die.  You just think about what symptoms you need to mention when the doctors next round.  You think about which antibiotics he needs to remember to take, and what his core body temperature normally is.  You don't think about buying a house or moving or jobs or life goals and how far into the future you can or can't plan - you don't think about how scary this all is, you just think about making it through each day, sometimes just each hour. 

And then when you're not in survival mode any more - those bigger picture questions, fears, anxieties, memories, feelings, and longings come back..

This is like PTSD, in a form.  Post-Traumatic Stress Disorder - with all it's flashbacks, anger, emotional numbness, hopelessness, panic/anxiety/fear, the overwhelming/debilitating reliving of a major traumatic life event or situation.  It's real, and affects you both physically and emotionally, and is worth processing with a professional and sharing with your community (both of which we're doing, don't worry).

But it is also grace, in a very weird way.  When you're in the midst of a trauma - your body, your soul, your heart, they can only handle so much.  To emotionally process all that you're going through, while you're going through it - it's too much.  So grace gives you adrenaline - gives you survival mode - until life slows down enough that you have space to breathe and process.  This onslaught of emotions, is a sign that we're actually moving into more spacious places, places with margins and air, and rest enough to feel everything - good, bad, ugly, and angry included - again.

So when people ask me how we're doing this week - I don't really know how to answer.

I've cried more times this past week than I have in months.
I've felt like a powder keg ready to explode.
It's been hard, when it's felt like it *shouldn't* be.
I'm feeling all the feels.

But at the same time, I know that this is part of the process of decelerating - of moving from the race-track-head-down-just-make-it-through-the-hour of survival mode, into the more spacious places.  It is the process of lifting up my head again - choosing to see myself fully, choosing to see my family fully, and choosing to see and to celebrate and to grieve all that has happened to us and in us these past few months - choosing to see the future, unknown as it is.  To begin to shift through the rubble.

There's space to feel again.

And now, we have a choice to make - we can

(a) jump back into the "normal" flow of life and just ignore all that has transpired in the past 5-6 months, both good and hard - this is perhaps the assumption of what most people think should happen after cancer/chemo finishes.  It has its own challenges, but it allows us to pick up the pace again, and find other sources of adrenaline rather than deal with the ugly that comes from facing the tide.

(b) dwell in the onslaught of emotions and let the anxiety/fear/stress/past/present consume us - this is perhaps the temptation, and the assumption of what many people think happens to those who have gone through cancer/chemo.  It honors the depths, but doesn't allow hope or light or life to enlarge it - and too often, it drowns you in the fears.

(c) figure out some way of unpacking and processing and celebrating and grieving and allowing that to shape us into more whole people.  This is the hard road, that has no road map, and can easily derail into either A or B - depending on your personality - but if successful, it is richer and deeper and more complex and makes us into more peaceful and whole human beings because it integrates all parts of who we are and heals wounds rather than buries them or allows them to fester.

So.  How are we?

We're slowing down.  We're feeling all the feels - highs and lows.  There is no such thing as normal, even as we are returning to normal.   We're just beginning the healing process, and that means we're kind of a mess right now, even as that is part of healing.  Even as we're still waiting on bated breath for results that tells us just how far out of (or still in) the storm we really are.

I don't really know how to end this, because it's very much still in process - so maybe just ... keep walking with us?  And thank you so much for walking with us thus far.

-KD

the complexity of hope

At the hospital, there's a harpist who plays regularly.  She's an older woman, with a sweet smile, and beautiful hands - she plays melodies that dance across the strings, light and joyful.

She's not there every day, and she's never in the same spot.  She shows up randomly, and seems to disappear just as quickly.  I see her almost every time we're here in the hospital - and yet she always catches me by surprise.

But every time I hear her, I think of hope.

I think of how it whispers into dark places, shines in silent corners, and shows up when you least expect it, like the perfume of an unseen flower.  It's strong and sweet and stands in stark contrast to the sterile halls, bright orange ER passes, weary smiles and tear-stained cheeks.  

I think of hope, and how hard it is sometimes - how elusive it feels on the hard days, and how dangerous it feels on the good.  

At each trail marker, we have been thankful to get pretty good news - prognosis is good, Jon's particular cancer is curable, the cancer was stage 1, the tumor is shrinking at the mid-point PET scan - and yet at each point, we celebrate, but can't really seem to fully exhale or feel like we're in the "safe zone."  I was explaining to a friend earlier that a cancer diagnosis is always unexpected and almost always a moment "when the worst that could happen, happens" and "when the odds are not in your favor."  Once that happens, it's very hard to fully feel like things won't fall apart on a dime again.  Numbers and odds have failed you - and there's no guarantee that those "good news" will remain.  

To hope - to expect good news and positive outcomes - it's risky.  Because it might not happen, and that totally-realistic-for-normal-people castle that you've built in the sky, like celebrating your milestone 40th birthday, it all can come crashing down just like that.  And hope dashed is devastating, crushing - almost worse than not hoping at all, because it feels like it can utterly destroy you.

But to not hope at all - to stay safely cynical and pessimistic - well, that's not to live either.  That option leads to despair, anxiety, and depression.  There is no joy in that - and it renders a life that is cloudy and gray all the time - you die, while still yet alive. 

And so we walk in a balance - hope, but restraint; optimism, tempered by your current "normal."  The juxtaposition of essential hope, intermingled with the knowledge that nothing is guaranteed.

We, Jon and I, have a lot of hope actually - I am very hopeful that we'll have many, many more years together for Jon to make inappropriate jokes about dying - but it always feels like it's breathed out in somewhat bated breath, fully aware that things can look perfect and then your world can fall apart in a day.  I've been told once you make it a few years out, it gets easier - but when you're in the thick of it, it's hard.  Even the simplest of hopes feels like it needs a qualifier. 

Please don't take this to mean we lack hope - but understand with us that it's complex, even while it is still fully hope.  

We're running a marathon, not a sprint - we celebrate each mile marker, but we still have to keep running, and so that full exhale feels elusive until we finish the race - and the "finish line" feels like it keeps moving.  The biopsy, the PET scan, the next PET scan, the next follow-up appointment, two years of remission, five years of remission, etc.

The most helpful thing that I have found for maintaining hope, through a season such as this, is incredibly simple:  it is "to not to," as our kids would say.  By that I mean, to not rely on hope *for the future*, because while much is hoped for, nothing is guaranteed. 

Rather, to practice gratitude and fullness in the present. 

There's nothing like having your world rocked to make you appreciate each moment that you do have together.  Sleeping in a hospital chair is hard - dealing with temper tantrums and meltdowns and odd side effects is not fun - but in the contrast of not being able to be with that person, even those uncomfortable moments seem sweeter.  Similarly, when all of a sudden time becomes finite - whether prognosis is good or not - you stop putting things off in the name of "sensibility."  You plan the trip, you go on the fun outing, you go in late for work, you skip the dishes, you say yes more, you hide less.  There are ways that facing your own mortality frees us from our own inhibitions. 

If I could give one piece of advice for those not affected by cancer (or life-altering illness) currently - and those who are - it would be don't put things off.

This is the only life we get. 

Hope for the future, absolutely.  Cling to hope, yes, please do.  We absolutely are too.

But live your life fully right now. 

Be grateful for the little things, each and every one of them.  Hope grows when you see that even in the crappiest of moments, there are still things for which to be thankful.  Because when you're grateful in the darkest hours, then you see, that no matter what the future holds, no matter how dark or scary, there will be good then too. 

Hope blossoms when watered with gratitude. 

Seize the moments you are given - you'll notice more of them when you're practicing gratitude - and choose to be present fully, whether in monotonous tasks that you have to do, or throwing caution to the wind and doing what you want to do "someday" today.   Celebration and mourning are opposite sides of the same coin - they are both attributes of being fully present and grateful for what you have/had.  To celebrate is to be present, as is to mourn - and both are to be grateful. 

And if you're in survival mode - and hope feels elusive, and gratitude and "seize the moments" feel like nonsense words spoken by motivational speakers - and you just need to put your head down and stumble forward, that's okay.  I can write this post now, but next week, I'm going to be right back there again with you, as we go into lock down to get Jon through neutropenia for the (hopefully) last time...  It comes and goes in waves, the drowning and breathing.

But when your head finally comes up for air, no matter how brief the breath, look around for places to be grateful - to celebrate or to mourn - no matter how little they are.  The silly joke you shared.  The ER nurse who brought you coffee.  The rain that didn't fall.  The one night without the temper tantrum.  The one stat that was good.  The harpist that plays in the hospital. 

Listen for the sweet strains of hope, sometimes made up of single notes of gratitude in the day-to-day... and hum their melodies in your head, over and over and over again, until you can still hear them, even when you're under water... 

That, my friends, is the complexity of hope (at least for me) in the storm.

Ho Ho Humbug... or Emmanuel Still Comes

It's been hard to get in the Christmas spirit this year.  I can't possibly imagine why.  OH wait.  Maybe it's the other big C (cancer) word that's been dogging our steps - or the 6 days in the hospital that we just got home from.  We're getting honest here tonight, my filter fell off about 3 months ago.

Sure, Christmas cards have been written, gifts have been purchased and wrapped (and then unwrapped by our enthusiastic 14 month old).  Menus have been made, the tree decked, the stocking stuffers bought, and advent readings have been done - we even made paper snowflakes, including a very vividly purple one [because three year olds].

But in many ways, all those things have felt very mechanical with only splashes of color.  A lot of going through the motions without a lot of depth of feeling behind it.  I've been told this is normal when one is going through trauma, so I'm giving myself lots of grace in it and doing what we need to do to make it through this season.  If this is you as well this season, much grace, friend.  Give yourself grace.

Today [when I started writing this, now yesterday] the kids and I set out to bake Christmas cookies - because it's three [now two] days before Christmas, and we hadn't yet.  So we pulled out ingredients for Greek Cookies and Nut balls, Kahlua Chocolate cookies, and rolled Sugar cookies - and were up to our elbrows* in flour and butter within seconds.  *that was a typo, but it's totally an accurate description for how floury the kids were, so I'm leaving it!

Frank Sinatra was crooning Christmas songs on the radio, and snow was gently falling outside - and the boys had a rare moment of delightedly creating moose-shaped cookies and not wrestling/fighting/spitting on things/whining about wanting to eat dough - and I thought to myself, wow, Christmas is almost here.  It's actually almost here.

And for five brief seconds, it felt like Christmas.  Like really and truly, felt like Christmas.  With joy and childlike delight, anticipation of laughter and sweet memories - the season fully upon us.

And then I heard Jon on the phone in the other room, talking to his oncologist, because he's been under with a bad cold all week and he'd just taken his temperature and, sure enough, had a fever.  Any fever at all is an emergency, when you're mid-chemo cycle - so thus began our still ongoing evening of back and forth to doctors, tired kids in tow, scrambles for childcare, and now culminating in a return to the unfortunately familiar ER.

So here we sit.  Waiting on test results and x-rays and praying it's nothing and maybe we'll get to go home in the wee hours of the morning [we didn't].  With that old familiar sense of dread and worry - is it serious? Is it nothing?  Are we going to be okay? Oh my gosh, I'm so tired.  Ho ho humbug.  Nothing says Christmas joy like the cold sterile floors of the ER.

I don't know what your situation is - but I'm guessing some of you know that struggle - wanting to find the joy and delight of Christmas, but finding it elusive.

As I drove the kids home after seeing the doctor, to drop them off with a dear friend, snow spitting in the headlights - the car was silent.  I couldn't handle another round of Holly Jolly Christmas or Santa Baby, and so the radio sat cold and neglected.  But eventually the silence got too oppressive and the kids a little too whiny, so I started singing instead - favorite old carols, the ones with minor chords and words that mean something in the hard times as well as the happy.

"Mom, what song are you playing?"

"I'm singing Oh Holy Night and O Come O Come Emmanuel."

"Mommy, what does Emmanuel mean?"

"Emmanuel means 'God with us'.  It's a name we use for Jesus, because He was God, but not a God who was far away, or unseen, but God who came down and was right there with His people - who could be seen, and touched and hugged.  Jesus is God who came close and was with us."  ... truly He taught us to love one another... chains shall He break, for the slave is our brother... and in His name, all oppression shall cease.

As I drove back to the hospital 30 minutes later, those same words kept running through my head.

O Come O Come Emmanuel - God be with us.  In the *midst of* oppression... in the *midst of* sickness.  In the middle of the ER, as we sit in the hospital room.  As we long for and wait for chains of cancer to be broken.  As we anticipate (maybe) spending Christmas apart from our kids, in this same hospital room.

Then the Grinch thought of something (s)he hadn't before. What if Christmas, (s)he thought, doesn't come from feeling merry?  What if it isn't about food and friends and family and being home?  What if it doesn't matter whether you're in a beautiful Christmas Eve service, or the hospital?  What if it doesn't matter if you're angry at God or life or cancer?  What if it doesn't matter if you're worn thin and are struggling to even try to find joy?  What if Christmas, perhaps, means a little bit more.

What if it simply is about recognizing that God has come?  Or *not* recognizing it, because He comes whether we acknowledge it or not.  Comes, into our humanity.  Comes to us in the hospital, on the 16th floor, as we wait for news of whether we celebrate here or at home?  He comes regardless of whether we feel like it or not.  He sits next to us in the hard, uncomfortable chairs and amidst the many night wake-ups, amidst sickness and discomfort [as my friend Pam says, a hospital is certainly a place where Jesus would be].  Comes amidst our anger and our sadness; our sleepless nights; our hope and our fierce love for one another; our sadness in leaving our babies at home yet again.

Comes with the promise that this is not the end of the story.  That hope wins - whether in this life or the next.  That cancer and death and disease, it does not win.  Come to proclaim, "The Spirit of the Lord is on me, because he has anointed me to proclaim good news to the poor. He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free." (Luke 4:18)  Comes to proclaim, "I AM" to all our doubts and fears and weariness.

Please do not take this post to mean that I *feel* Emmanuel, God with me, in this season - quite the opposite.  I have hit my breaking point - and I feel very little, except extremely sad and like control has completely escaped me (...and very tired).   This hospitalization is a little set-back, nothing too serious hopefully, but sometimes all it takes is a straw to break the camel's back, especially after several long months - and the thought of not being together with Jon and our kids, or not being home for Christmas, it's just too much ((✋ camel here)).

But I am clinging to the hope that whether I see Him or not - whether I feel Him or not - Christmas, when it is stripped of all its adornments and sparkle, Christmas is the same in a hospital room or a cathedral.  It is the same when you are alone or when you are surrounded by loved ones.  It is the same when you are grieving and when you are rejoicing. 

It is the simple promise, wherever you are, you are not alone.  Emmanuel, God with us, has come.

honoring their grief

Our oldest son Samuel is almost 5 (turns 5 in January).

According to him: His favorite color is green.  He loves reading, and is fascinated by how things work.  If he could talk to any famous person, it would be Thomas the Train, Tom Brady, or Isaiah P, his friend Tabitha's very cool big brother.  His favorite things to do are stay in hotels, go to the playground, and play mini-golf.

The thing he is most scared of is that his Daddy will die.

Each night before he goes to bed, he has to know, "will you be here all the way through the night, unless you have to go to the hospital?" and "is the power going to go off?"

He cries every night when I have to leave to go back to the hospital and begs and pleads for me not to leave.  And it takes him a long time, in each 21 day cycle, to trust that Jon is okay and able to be there for him.  He clings to Mommy a lot more these days because he is scared that something will (is) happen(ing) to Daddy.  He has bursts of anger, frustration, and emotions that he can't name.   Being told no by us, even in the "normal" days, sets him off in ways that are disproportionate to the situation.  He has asked more than once, "when is Daddy going to die?" even though we've reassured him that Jon's prognosis is good. 

He is grieving in his own way, this crazy situation we find ourselves in.  His little brother and sister are as well, but they understand a little bit less than he does, and they process it a little bit differently.

Throughout this process, I cannot count how many people have reassured me that children are resilient (defined: able to withstand or recover quickly from difficult situations) and that, regardless of outcome, my children will be okay.  Stronger even, for having had to go through this trial.

That might be true.

Scientifically, muscles that are used grow stronger than muscles that aren't.  Bones that are under pressure, grow stronger (Wolff's law).  My children, who are processing life and death and grief and having to push through things that children shouldn't have to - they are exercising muscles that others don't have to, and that will lead to growth and strength that they wouldn't have had otherwise.

My hope for them is that they will develop inner strength and perseverance, compassion and empathy, and a value for the sweetness of each moment of life that others might not have, as a result of this.

But in the here and now, to speak only of children's resilience - it feels hollow. 

It feels like it minimizes the very real grief and fear and loss of security that my kids are processing - all three of them, but especially the older two, who are more consciously aware of what's going on. 

A few weeks ago, November 16, 2017, was Children's Grief Awareness Day - I had never heard of it in our BC (before cancer) world, but I've found it a helpful resource and reminder in this season.  This quote from the website really resonated with me: [this day]"allows us to advocate that any child that is old enough to love is old enough to mourn... " 

Any child that is old enough to love is old enough to mourn.

Children are resilient, yes.  But they also love fiercely and grieve deeply, even at these young ages.   And I'd like to honor that for my children.

For the one who is grieving externally in obvious ways.  For the one who is internalizing everything and worries me from the things that occasionally surface from the deep.  For the one who I simultaneously rejoice won't remember much of this, and then worry that if things don't go as we hope, won't remember much of this.  All three of them feel the weight of this - even though they are all young enough that hopefully this will soon only be a small memory for them.

So please do me a favor?  Don't just tell me that children are resilient - even though it's true, and I am thankful for the encouragement behind that sentiment. 

Tell me instead that you get it that this is hard.  And that you know we'll all get through it, but that you're with us while we're in it and you know that it sucks.  Instead of telling me that kids are resilient, help me create fun moments of "normal life" for them now.  Send them a card when their daddy is in the hospital.  Give them extra snuggles (only if they know you), laugh at their jokes, and cry a little bit with me when they tell you that Daddy's favorite thing to do is go to the hospital because he's always there.  And if you've been through this with your own child, or as a child yourself - we'd welcome your wisdom.

Today at the hospital, as I pried their arms off my legs and bade them farewell as they wailed my name and begged for me to come with them, screaming and sobbing yet again - the same as every other time I've had to say goodbye in the last few days - I turned around to see a brand new mama loaded up in her transport chair, hours-old babe in her lap, clutching the bottle and pacifier as if they were lifesavers, weary but still wonder-struck.  Her wee one all bundled up to protect him from the cold world.

Me with tears in my eyes, because I can't protect them from this cold, broken world.  Her with tears in her eyes because he was so brand new and perfect and hers to care for and protect now. 

Oh mama.  That love you have for him now - it only grows.  That tiger mama heart that would do anything to protect them - it only grows fiercer. 

But some days you can't protect them.  And all you can do is grieve with them - and honor their grief and hearts and fears and feelings - and trust that somehow you're all going to make it through this, no matter how long or hard it is. 

And so I honor my children today.  This sucks for them.  There is no easy way around it.  Yes, they will make it through it, but it will not be untouched.  These scars, they will make them stronger, but they are painful in this season.  We'll lean on our friends and family, we'll find resources that are helpful, we'll keep speaking hope and finding moments of normal and fun together.  Together, we're going to push through and build those muscles of compassion and empathy, and hope, and perseverance - resilience even. 

But today, that might be through our tears, because there's a lot of love for their Daddy here, and their grief is real.

This is my body...

When you have cancer, everyone brings you food.

Lots and lots of bubbling, delicious, wonderful, nutritious, warm, tasty food.  [And some that is so deliciously not good for us, but we're kind of okay with that.]  I *guess* we'll eat it if we *have* to!

In the 60ish days since we got our initial diagnosis, we have had someone drop off a meal nearly every other day - I have cooked a little bit, as needed, but not very much, honestly.

Probably a good thing, if the days after diagnosis were any indicator - all I remember is forgetting to thaw anything for dinner, and trying to microwave-thaw a steak, sobbing as I broke off pieces of frozen styrofoam, trying to speed up the process as kids cried and tugged at every appendage.  Thank you, everyone who has fed us, for preventing this, or worse, from being our nightly spectacle.

All of those meals, they feel like love to us.

A few weekends ago, as two separate families - one, a friend from high school that I'd only recently reconnected with after a decade apart, the other, a former student from my campus ministry days that I hadn't seen in years - dropped off meals for us back to back, I had the very clear thought:

"This is my Body, broken for you."

"This is my body, broken for you.  Take and eat."  These are the words of institution, for the sacrament of Communion in the Christian church.  Jesus' words, as he ate the last supper with his disciples, and prepared them for his death to come.  Reminding them to remember his death and resurrection, and to cling to its power and humility.  Christians believe that in partaking of it, we symbolize (or, depending on your denomination, it is literally) how we are joined with Christ in his death, and thereby also, his resurrection.

Christians also say that we, as the universal Church, are called the "Body of Christ" here on earth.  Meaning, we're bound to Christ and to one another, resurrected together through his physical death and resurrection, and called to live out his purposes here on earth until He comes again.

....

Faith has never been simple for me - I am a cynic and a wrestler, even through years of ministry.  Whether the spiritual abuse I've seen, all the questions I have, the scientist or the feminist in me, or my fiercely driven-by-justice personality - my faith has very rarely been easy.  I laugh a little bit when others tell me that people turn to faith in hard times because it's the easier path - for me that has never been the case.

Crisis leads my husband to cling to Jesus more tightly.  It leads me to anger and questions.  And then clinging to Jesus - but I get there slower than Jon does.

But in the two and a half decades that I've called myself a Christian, I've come to realize that that's okay.  A God who cannot handle my questions, my anger, and my doubts, is not particularly worth following.  A God who is fully understood by my human mind and intellect, well, that's a rather small God.  As I've wrestled and sought answers, and abandoned faith, and then returned to it, I am more convinced than ever before that there has to be a God, and that the Christian God manifest through the person of Jesus, well, that is more persuasive to me than any other - logically, personally, empirically.

And yet, these past few years, I've really struggled with Christianity, and in particular, people that call themselves Christians and yet live in ways antithetical to what Jesus proclaimed.  Evangelicalism has felt politicized, judgmental, and not Christ-centered.  And I have wanted to run as far from this body as I can... which is not far, when still clinging to the God of the Bible, made known through Jesus, who loved his people to the point of giving up everything for them.

...

And yet, as I carried warm food up the stairs to my already packed refrigerator, the thought kept running through my head - this is my Body, broken for you.

This is my Body, broken for you.

...

The Body of Christ, meaning Christians, we are a messy bunch.  We can be are can often be arrogant, self-righteous, judgmental, and hypocritical (among many other positive characteristics like compassion, humility, generosity, hope, and joy, to name a few).  We fail, often, to mirror the God that we claim to follow.

And yet.  And yet, our village - this Body - it is tangibly demonstrating the love of Christ to me, every other day.  It is heart-broken and bending over backwards - breaking - for my family, loving us in this our season of pain.  And every other day, it shows up at my door proclaiming, "take and eat."

This might be sacrilegious, but this regular meal delivery, it's like communion for my body and soul.  It reminds me, you are not alone - we love you and are with you.  You are not alone, you have a hope that is greater than this any limitation or fear.  It bids me "take and eat" because this body of your people, we care about you deeply and will bring you to Christ, through our prayers and our tangible cares, in this season.

Our village is being the Body of Christ, broken for us.  It bids me take and eat, warm, delicious, nutritious food, and in so doing, remember the goodness and sacrificial love of the Lord.

For those who are not Christians, but have loved our family well in the last few weeks - I'm not trying to lump you in with anything that makes you uncomfortable - I'm simply saying that you have loved us in a way that has reflected the truest and deepest love I can imagine, and I am so deeply grateful.

...

I remember my first communion, years and years ago.  I was 10 years old, and had newly said the sinner's prayer and claimed Christianity as my own.  There was cancer involved then too - my mom's second round of breast cancer that time.  I had decided to accept Jesus because I was scared of what would happen if she died and I was left behind.  While fear is never a good motivator, and there were so many parts of Christianity that I did not understand or grasp at all, it was an authentic decision, and I remember the holy weightiness of that first communion, fully joining in with the Body of Christ for the first time.

Now decades later, my faith is far deeper and more certain - my questions, fears and doubts different - refined by years of familiarity and wrestling.  But it isn't fear that invites me into the holiness of Communion these days.  It's the tangible love of those around me.  It's homemade lasagne and baked french toast, it's takeout pizza and steaming hot bowls of pho, it's split pea soup and sourdough bread, edible arrangements and pre-sliced strawberries.

It's the tangible love of those around me, who though flawed like me, have loved extravagantly.

- KD

...

T+48 with thanksgiving in all things

In the last 48 days since our first indication that something was wrong, we have had many things to be thankful for.  And in a season where it's easy to drown in the hard parts, Jon and I are trying to make it a discipline to choose gratitude and to notice the little things (non-medical) that make life a little sweeter, easier, and funnier.  I've written about this before, but here's round 2, since it's been a while:

We are thankful...

... for our oncologist (and oncology care team) - we're really thankful for her thoroughness, straightforwardness, and willingness to answer all our questions and give us straightforward answers.  We're thankful she went the extra mile to run extra tests and ensure that we knew what we were dealing with quickly and completely, and that we were able to start chemo right away, and there wasn't a long waiting period.  Just over two weeks after our initial diagnosis, we were inpatient beginning round #1.

... for our lovely friend Amy, who took such beautiful photos of our family before chemo started - we treasure them, and our time with you, and were so thankful you fit us in before everything got started.

... for all the family members (and friends) who have rotated through to stay with our crazy (and sweet) kids so that I can be in the hospital most days and nights with Jon - it has been a labor of love and sacrifice, which they have joyfully made without hesitation, even through sleepless nights with anxious kids.  It has made a huge difference in knowing that our kids are well-loved and cared for when we're not able to be there.  We truly feel our village.

...  for the night nurse who hunted down a breast pump for me our first night inpatient, after I'd forgotten mine, so that I wasn't in pain and didn't have to leave the hospital in those first scary hours.  And grateful that while I have weaned some, I haven't had to do so abruptly as anticipated.

... for rollaway cots and nurses who go out of their way to find them - they might not be as comfy as our beds at home, but man do they beat the chair experience!

... for the friends and family members who continue to send meals, drop off groceries, bring coffee, and run errands multiple times a week - you have no idea how huge of a difference it makes not to have to worry about that amidst everything else.  Thank you.  For those of you that have come over spur of the moment or middle of the night to watch our kids when we've had to go to the hospital - you are a blessing beyond words.

... for a night of normal, trick-or-treating with our kids.  It was so fun to see them excited and adorably dressed up, hanging out with their friends.  Their normal has been chaotic lately as well, and so it was a real gift to see them so happy (albeit vastly over sugared!)!

... for the friends (and strangers) who have generously given money and gift cards to help cover parking, meals, house-cleaning, winter clothing for the kids, and hospital bills - we are blown away by your generosity - and your notes and cards have all been read as we sit in the hospital.  They make us laugh and cry, and in general, feel very loved.  Those of you who have had your kids write cards or send pictures - so sweet and special!  Thank you!

... for our squatty potty that we rescued new in-box from a dumpster years ago.  We appreciated it before, but in chemo/post-chemo/post-hospital digestion, man, does it make #2 easier.  Wish they had these standard in hospitals...

... for a nice shaped head and the advent of hat season just in time for hair loss

... for the person who offered to be a bone marrow donor, if it was needed (not the one Jon mistakenly thought had offered that when they hadn't - although that exchange was kind and humorous as well!).  We have no words - your generosity brought us to tears.

...  for the mouse that kept running back and forth across the hospital admissions waiting room, as we waited for hours to be admitted for round #2.  One never thinks that would be something we'd be thankful for, but it was funny and entertaining, and broke us out of our frustration just a little bit!  And when the room attendant was startled by it and screamed and then tried to pass it off as a sneeze so no one would know there was a mouse (even though we'd been watching it for an hour+), that brought laughter that was so needed in that particular moment.

... speaking of mice, we're thankful for the pest control company that came out quickly to block off holes in our house so that our own local mouse problem would be abetted, since my glue traps were only successful in catching our toddler.  We are also thankful for a sweet friend from church who helped me trouble shoot our freezer issues, and for a warranty that covers the repairs needed.

... for the healing garden at Dana Farber and the moments of breathing space and respite that it offers

... for the invention of Purrell.  Keeping kids not germ-y is hard enough as is, but I can't imagine doing it without that blessed little bottle. 

... for teachers (and a school) that work with us to love our kids and care for them well, and keep them as germ-free as possible - it has felt like a community and family in the midst of this crisis.

... for all the text messages, emails, letters, humorous stories, and calls of encouragement.  We might not reply to them always - my emailing was abysmal before and is even worse now - but we do read them all and appreciate the tangible reminders that we are not alone.

With Gratitude,
J&K

Caregiving: wholly, holy, holey

Caregiver.
Support Person.
Spouse.
Partner.
Teammate.

All hats that I have worn for Jon in the past decade that we've been together.  All titles which can be preceded by the word cancer now.

All terms that I feel like I should write about, in order to help me process.  But in many ways, it's all so raw and real and in process now, that I don't know that I have the perspective for this to be particularly cohesive.  But I process when I write, so here goes nothing.

Being a cancer caregiver - or really a caregiver for anyone who is diagnosed with a life-altering/life-threatening condition - is hard.  How's that for a "no duh" opening statement?

It's hard because, while your body and being remain the same, suddenly your world is taken over by your (plural) diagnosis.  While the diagnosis is not yours (singular) personally, as the primary caregiver, you bear its weight daily as well.  It defines and takes over your (singular) world as well.

All of a sudden my blood cancer vocabulary and knowledge has dramatically expanded.  My knowledge of chemotherapy drugs and cutting edge research and potential side effects went from 0 to 60 in just a few weeks.  And I now know (kind of) how to explain a tumor, cancer, and chemotherapy, to a 3 year old.  I have alarms in my phone to remember drug dosages, I am constantly texting someone to arrange coverage for something, I care far more about his digestion and bodily processes than is decent to discuss, and when he has a bad day, I bear that weight too.

We've both grieved, and still grieve, the loss of our "normal" - we've processed, and are still processing, the "what if's" both good and unthinkable - and we're both actively trying to figure out how to live life fully in the unknown period, keeping things as normal as possible for our three children, while not ignoring the trauma that we're all going through.

Cancer is never easy, but being young adults, young parents, facing cancer has its own unique challenges.  If you want to learn more about some of them, this is a helpful resource.

Add into the weight of the diagnosis, the weight of all our "normal" roles - kids, housework, finances, etc. - previously divided between the two of us, now falls almost exclusively on me - in addition to the new caregiver roles.  Plus handling our kids anger and meltdowns from the disruption to their normal.  Plus coordinating things for kids or Jon or family coming into town when all are not in the same place and I cannot be in both places simultaneously.   I fully intend to add "logistics coordination" to my resume, because it is a skill that I have had to master these days.

I am eternally grateful for the masses of friends and family who have delivered meals for us multiple times each week, run errands, picked up groceries, or watched our kids.  They might seem like little things, but they are sanity savers (and such a gift to a caregiver!) when you're stretched to capacity.

My husband bears the disease in his body, but the weight of it is on us both.

The hard part of writing this post is trying to explain that weight, without sounding like I'm complaining or trying to get attention - I'm not.  I do it gladly, and would not exchange it.  I meant "in sickness and in health" literally when I made that vow, and I am glad that I get to be the one who walks with him through this journey - most days, it is a joyful privilege because it means that I get another day with my love.  I take none of them for granted these days. But it is weighty and life-altering (and exhausting) for both the patient and the caregiver, nonetheless.

And sometimes it's really hard to explain to someone who hasn't walked this walk - of caregiver - just how difficult, and yet rich; how hard, and yet beautiful; and how overwhelming, and yet simple, this position is.

There is an intimacy that comes from sleeping in the uncomfortable hospital chair next to your spouse, and waking with every nurse that comes in.  There is a nakedness and vulnerability from coming face to face with your spouse's mortality (and your own), where you stop pretending and stop protecting, because you know that your days are not guaranteed.  There is a holy weightiness of being an advocate and defender and knowing the meds, routines, and side effects that come with hospitalization and treatment.  And there is a simplicity that comes from a life-altering diagnosis, where everything accessory falls away because you simply cannot manage more than you have to, you know what matters and you let go of what doesn't, and you have to accept help.  You say no to obligations a lot more, and yes to help more.  And you become far more aware of the little things that make this hard place easier, funnier, and more beautiful - if you let it, gratitude blossoms in a way that it cannot often otherwise.

Even a mouse in the waiting room is a humorous gift, all of a sudden.

It is a holy weight.  And yet it is a weight, nonetheless. 

Take time for yourself and make sure to practice good self-care, they say (among other wise advice).

And that's true and wise and wonderful and needs to happen - but how and when?  And how do you fight the guilt that comes from taking time for yourself when your kids need you when you're not with your husband and your husband needs you when you're not with your kids?  Even though you *know* that you need it and can care better for everyone when you're, you know, sane and have a little sleep.

I was driving home from the hospital the other night, to be with the kids for a few hours before returning to the hospital for the night, and knowing that I needed some sanity time, decided to make the 30 minutes in the car "my time."

I made it about 5 minutes before I remembered something about my husband's digestive process that I was supposed to remind him to tell the nurse, and knowing that he'd push back on asking for meds to assist with it, I stressed and worried about it and spent most of the drive trying to figure out what, where, and when I needed to act.

Self-care #fail.

I called a friend on the way back to the hospital and she let me vent, and reminded me again that I need to take space to care for myself.  She made me laugh and reminded me that I was not crazy.  We found little wins in the day, and I went back into the hospital much more sane.

Self-care #win.

I don't have a point. I'm not far enough on this journey to be able to give any sage advice.  Suffice to say, cancer (insert your own life-altering/life-threatening circumstance here) weighs on and changes more than just the person who bears it in their own body.  We caregivers, we carry it in ours as well. 

It is complex and hard and heavy and beautiful all wrapped up into one.  Don't tell us what it feels like, or what we need - ask us.

And when you pray for or seek to care for people who have cancer (insert any other malady here) - see if there are ways you can pray for and care for their caregivers as well.  Most of us are pretty tired.  Most of us need people to vent to.  People to support us and feed us and tell us to go the bleep to sleep.  People to release us from the guilt that we feel for taking care of ourselves.  People to help us laugh, see gratitude, and retain some semblance of the normal we so desperately crave. 

We cannot do it alone (and I'm so thankful that I'm not).