Candace… Part 1

I remember that it was June 17th, because it was Father’s Day.  Kevin was so sick that he wouldn’t be going anywhere that Sunday morning.  I also remember it was Father’s Day because I hadn’t gotten him a damn thing.  And I felt like a loser wife because of it.  Even if I knew we both got a pass.  I was tired and exhausted and all I could think was that it was going to be yet another day where I was alone at the house tending to two little children downstairs and a sick husband upstairs.  We had ten more months to go of subcutaneous interferon.  And I definitely wouldn’t be going to church.  Again.

We love our church.  Oh, how we love our beautiful, tiny little neighborhood church that we stumbled upon in the fall of 2010, shortly after moving here from Los Angeles.  There are maybe 30, 40 members.  We meet in an old movie theatre, converted to a cheerleading gym, now converted to a church.  We have a curtain hung halfway across the main room because our church members could never fill up the whole space.  But we will be needing to move the curtain back a few feet soon 😉  All of us parents with little children hold our babies for the first hour, bouncing them on one hip and tending to our preschoolers with animal crackers and crayons.  Children wander the aisles and receive snacks or get held by just about anyone in the congregation.  No one minds if kids cry or whine, and we all love that everyone, big and little, gets to experience worship and prayer.  The parents take turns herding the little ones off to “nursery” during the sermon.  It’s wonderful, but also exhausting for any parent during this season in life.  But for us, when I’m showing up at church already at 50% and Kevin’s at maybe 10%, we just haven’t had the energy to tend to our kidlets while trying to worship and participate in service with the body.

We hadn’t been to church in about six weeks.

Oh, we’d tried almost every Sunday morning.  And sometimes we even made it to the building, only to turn around five minutes later and bail with a 17 month old who really still needed to be napping and an almost three year old who was whiny and clingy, as he sensed our own exhaustion and weariness.

I missed church.

I needed to go to church.

And on Father’s day morning, at about 9:00, something from deep within me screamed, “I have GOT to go to church today!”

I called my friend Becky to find out if her church had childcare for the full service.  I was about to ask her if she would just take my kids so I could go to my own church, but it sort of seemed inappropriate to ask.  So instead I just asked if I could go with them.  She said yes but that they were leaving right now for the 9:30 service.  I said I’d meet her in front of my house in 5 minutes.

God orchestrated every detail of getting to church that day, and even though it wasn’t my own church with the body of believers who had been walking this path with us for the last nine months, He gave me immediate affirmation that I was right where He wanted me to be.  The children got checked into childcare without a hitch, and as I walked into the worship center, I began to cry.  I don’t think I realized until that very moment how much I had missed the opportunity to worship freely, without wee ones to tend to.  The church I went to that day, Trinity, has a fun mix of being kind of a “hip, modern” church, but also with lot’s of church liturgy.  And you know how I feel about church liturgy.  There was a collective reading of scripture, and the verses were from Second Corinthians, Chapter 5, verses 5-9.

Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee.  So we are always confident, knowing that while we are at home in the body, we are absent in the Lord.  For we walk by faith, not by sight.  We are confident, yes, well pleased rather to be absent from the body, and to be present with the Lord.

Now, I am not a biblical scholar by any means, and so my interpretation of this verse, in that moment probably has very little to do with what it actually means.  But I know for me, I was feeling grateful to be at church somewhere, but wishing I was at my own church, with my own church body.  And what God said to me through those verses was that I needed to be absent from that body in order to be present with the Lord.  And that God had something to say to me right now.

Every bit of being able to relax and participate fully in the worship service was so life giving to me.  But you guessed it…

There’s more.

There was a guest speaker that day, the director of the church’s women’s ministry.  Her name was Candace Smartt and she was giving a sermon on abiding through difficult times.  At least, I think that’s what it was about.  You’ll have to ask her, because I can’t remember anymore.  What I remember was that, halfway through the sermon, she casually mentions that her husband was diagnosed with non-hodgkins lymphoma three years ago, and that it was really difficult, and that she was thrown into this role of full-time care giver and that she didn’t know if her husband was going to live or die.  And I cried quietly in my chair.  Because she knew.  I immediately planned to write this woman a letter, thinking perhaps she might write me back, give me a note of encouragement.  I knew that this was a woman who knew exactly what I was going through, and keep in mind, this was before we knew Kevin’s cancer had recurred.

At the end of the sermon, my friend Becky immediately said that she would get my kids and that I had to go up and talk to her.  Believe it or not, I was nervous about this, because I know all too well that I say inappropriate things, I overshare, and I was also pretty emotional.  I try to be aware of how I can overburden people that I barely know… it didn’t quite seem appropriate to do that to someone I’d never met.  But I went up anyway and the first words out of my mouth were, “My husband is fighting melanoma, and it sucks” and then my voice broke, and I started to cry.

Stupid cancer.  Always making me cry.

Big God, always giving me shoulders to cry on.

She opened her arms, this woman who was the same age as me, this woman who knew, who absolutely knew exactly what I was feeling in that moment.  She pulled her arms tightly around me and I cried and cried and cried.  I absolutely sobbed, and I was so embarassed, because here I was standing in the middle of this hip, cool church, with this woman I’d never met, and I was breaking down.  And yet at the same time, I knew that this was God’s gift to me.  He had given me this woman, for this moment at least, to share in my burdens in a way that only she could.

After about five minutes (or more, I don’t know) I finally got it together enough to sit down and chat with her for a moment.  We hunted down some kleenex, and I finished off the box.  I tentatively asked her if her husband was okay.  She pointed across the room and said, “Yep, he’s right there.”  And we exchanged numbers and promised to stay in touch.

Little did I know that God’s gift to me was not just for that day.

Two days later, we sat in Kevin’s oncologist’s office and they told us they were concerned about his symptoms and were ordering scans.  And you all know how that turned out.

To be continued…

Back to Cancer Camp for Round 2

Hi friends,

I have a bunch of drafts of blog posts to share with you, but I keep starting something and then not finishing it!  Hmmm… sound familiar?

Anyway, just a very quick update for now.  Yesterday we checked back in to Emory for round two of Interleukin.  He will go for as many doses as he can (max of 12) this week, and then we will be off for two weeks of recovery.  Sometime during the week of the 20th of August, he will have scans to determine if the IL-2 has made any progress on eradicating the cancer.  We are going to assume that it will have.  Then he will go back in August 27th for round 3 and September 17 for round 4.

So far Kevin has made it through three doses this week, and it’s already been much rougher on him than last time.  However, he has had no chills or rigors thus far!  I am incredibly grateful for that because it is especially scary for me when it happens.  He has had a lot of itchy skin, some nausea, and just general fatigue.  He also says he feels pretty achey and so has been trying to just sleep through a lot of this.

We did meet our goals today though, and he just has one more dose to check off before he calls it a day!  I’m proud of him for taking a shower and walking some laps today, these are no small feats when he feels so crappy.

On Sunday night we had a time of prayer and fellowship at our house and it was especially encouraging.  I am constantly grateful for our house.  I know it may sound silly, but I truly believe that God picked that house out just for us.  One thing it has enabled us to do is entertain large amounts of people easily.  Several friends came over with their children and they enjoyed some wonderful summer stew made by my sister and brother in law.  My neighbor Maiya made the most delicious cornbread and she also kept watch over all the children in the playroom and the guest bedroom where we put on a movie.

This meant that many of our friends who otherwise might not have been able to join us were able to participate in dinner and the the prayer time.  The space is just really well laid out for things like this, and it was an easy event with no need for preparation on my part.  Having lived in high rent, small apartments for most of our married life, both Kevin and I know that this house, its size, and its layout are a really big gift and we are incredibly grateful for it.

That said, we are also so grateful for all of the families that filled it up Sunday night.  It was an emotional event, but incredibly encouraging for both Kevin and me.  I had not really been in the best place last week, and now I am filled with hope and joy as we push through this next week.

Please pray for:

  • Encouragement and strength for Kevin
  • Rest for me as I rarely sleep well at the hospital
  • Continued peace for my children as they are just doing so wonderfully with Lila and Paul, and I hope their spirits continue in that manner
  • TOTAL healing of Kevin’s body from this cancer


How to be Still

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I am a compulsive list maker.  When I was first diagnosed with ADHD as an adult, one of the components of my “treatment” was to find a good time management system (In case you’re wondering, the other components were at least one hour outside everyday, at least one hour of physical activity every day, and at least an hour of quiet, meditative time).  In the seven years since I began my journey of learning about living with and managing my ADHD, I have found and abandoned several time management “systems”.  I’ve read books like Getting Things Done and ADD Friendly Ways to Organize Your Life.  I’ve found lot’s of good tips and tricks along the way, many of which have, at various times, enabled me to find a sense of settledness and peace in a brain that often feels like it is in overdrive.  But in my quest to cultivate better time management skills, I also bought into the productivity monster.  Kevin came along for the ride, and he too has struggled with now feeling like being more productive was one more thing we had to “do.”

I have started to realize that time management and productivity are two very different things.  One was a prescription given to me as part of a wholistic approach to find inner peace in a brain that is wired a little differently than many others’.  Time management should give me tools to literally manage my time, take control of my time instead of letting time control me.  Productivity, on the other hand, is literally about, well, getting things done.

Back to my lists.

In my quests for what I thought was better time management, the one thing that I carried across all of my different approaches and systems was making lists.  I would have so many things jangling around in my brain, and so I would sit down and write a list to get everything out of my head.  I would have dreams of projects for our house, so I would make lists of those.  I would make lists of things I was grateful for.  I would make lists of things I wanted to change about myself, areas in which I wanted to grow, books I wanted to read, and even attempted to have lists of elaborately detailed daily and weekly schedules.  I would make meal plans, schedules for the children, weekly activity lists, and even curriculum ideas (because you know, Jude’s three and all).

I would sit down and make a list, or more often three or ten lists.  And I would feel better.  I would feel like I had a plan, and now all I had to do was work it.

And then I would lose the list.

Or I would forget about it.

Or my child would turn it into artwork.

Or the dog would eat it.

Or most often, it would simply get buried in another pile of papers somewhere in the house.

And I would feel like such a loser because I couldn’t even get anything done on a stupid list.

List making was obviously not leading me to inner peace.

I know you’re wondering, what does all this have to do with the oh so spiritual sounding blog post title, “How to be Still”?  Trust me, I’m getting there.  Plus, I’m not really as spiritual, or prayerful, or meditative as you think, but it’s written down on one of my lists to work on!

About a month or so ago, I had been meeting with a few dear friends from our neighborhood.  They are a married couple who are a little older than us, and have ministered to us in many ways since we moved in.  They had come over to pray with me (well, us, but Kevin was upstairs sick)  They asked me what they could pray for for me (this was before Kevin’s recurrence) and I said that I was having so much trouble being able to pray myself.  I said I was usually able to find the time to pray, as my kids, mercifully, have a good and predictable sleep schedule.  But that when I would try to sit down and pray or study my Bible or a devotional, or anything, I would inevitably get caught in a literal whirlwind of trying to start a load of laundry first, feeling like I needed to clean up the porch, or empty the dishes.  I would sit down to pray and constantly jump back up, getting caught and jostled around by my own overactive brain that was now telling me I had to be managing my time in a productive way, and yet I’d still not really figured out how that was all supposed to play out.  But in the end, it was something that was really preventing me from being able to sit and be present with God.

And I had no idea what to do about it.

In their wisdom, John and Rachael did not give me suggestions, but simply said, well, then let’s pray for God to help you with that.  It felt silly.  Here I was, with a husband with cancer who was sick as a dog from interferon, a million other daily worries, and we were going to pray for God to help me get on top of my “time management” so I could figure out how to pray for more than eight seconds without my brain or body wandering off.  But since they were the ones doing the praying, I gratefully accepted and bowed my head.

The next morning, I woke up, feeling not exhausted, but energized, and ready to get out of bed.

It was 5:30 in the morning.

For those of you who know me, I really don’t like getting up early.  In fact, I really like to sleep a lot, and my dirty little secret is that my kids sleep until 8, and so I will often dose lazily in bed until their morning chatter turns into insistent cries.  Only then do I drag myself out of bed, come down and free them from their cribs and start another day where I usually forget to shower and it takes me an hour and a half to get the dishwasher unloaded.

But this morning, I felt awake, and something told me I should go ahead and get up.  Let’s just say it was God.  I can’t really say, but I figured I should do it.  I took a shower, got dressed, and found a spot for myself on the front porch with a notepad and a cup of coffee.  I remember thinking to myself how nice it was to be up this early.  It wasn’t so hot.  It wasn’t noisy or stressful.  It was quiet, still.  I thought I might as well go ahead and pray some, and so I did.  But as soon as I closed my eyes, thoughts about the house, the kids, life, started to bombard me.  So I opened my eyes, and I started to make a list.  But this time it was different, and I know this will sound silly to many of you, heck it feels silly to even say it, but I truly believe that God gave me this list.

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As I was writing it, I got up out of my seat and went back into the house.  I walked around, thinking about how large the house was, such a blessing, but also such a challenge for someone with ADHD.  I knew that so often I was running from one end of the house to the other, or literally spinning in circles as I made my way through the many moments of my days that constantly screamed out for attention.  I started to carefully think about what things were important to me to get done in order to feel like I had a peaceful morning.  It was less things than I thought.  I started to think about the order in which I could do them so as to be making a smooth circle around the house, with little overlap, a motion that felt productive, kind to my future self and in a way that accomplished the basic tasks of my morning, yet required VERY little from me in the way of brainpower.

I realized that, by setting my alarm for 5:30 and taking my ADHD medication, then snoozing for another half hour, I got my desire for dozing in, I gave my medicine a half hour to wake up my brain, and that in a fairly leisurely hour, I could find myself sitting on my porch, dressed, fed, with the house turned “on” for the day, the dishwasher ready to receive dirty dishes, and a peaceful, quiet spirit by 7 in the morning.

The next morning, I tried out my plan.  I walked through all the steps, my list in hand (which I had somehow managed to not yet lose!)  I followed everything exactly on the list, and I was amazed at how by 7:00, I wasn’t exhausted, but refreshed.  See, I’d been accomplishing lot’s of things for the last hour (productivity) but my brain didn’t have to make a single decision!  I flopped comfortably down onto the porch swing, coffee in one hand, devotional book in the other.  I sat and read!  I closed my eyes and prayed!  I was peaceful, calm, and still.  I remember that I actually sat, eyes closed, brain resting, and simply listened.  For the first time that I can EVER remember, I have felt quiet and still at the feet of our Lord.

Prayer has been a GIANT struggle for me all of my life, and something about which I have not often shared.  I don’t know why not.  It just seemed like, well, embarassing, frankly.  But I’ve been meeting other friends who have gone through similar journeys as Kevin and me and they have shared openly and honestly in their writings with friends, and I have found it so affirming and encouraging.  So I figured I should open up a little bit more about the real personal stuff, like ADHD, my compulsive attempts and failures at list-making, and my struggles with talking to God.

I’ll be honest with you, I’m really not exaggerating when I say that my mind wanders EVERY SINGLE TIME that I try to pray.  And it often starts to wander in the first five or ten seconds.  I read about the great theologians who would spend hours or days in prayer and quiet meditation.  I hear friends sharing about praying over ever single chemo infusion.  I hear from so many people in my own network who tell me and Kevin that they are praying for us, every day, that their kids pray for us at night-time prayers, and I feel like a failure at prayer!  I don’t even pray every day.  I don’t do prayers with the kids… we’re all so exhausted that I often just give them a baby wipe bath and toss them into their cribs and walk out the door.  (Again, it’s God’s tender mercies that my children have tolerated this)  I don’t read my Bible or meditate on scripture.  I have verses taped up all over the house, and they often give me short moments of peace, or help me talk myself off the proverbial ledge, but I don’t ever have serious, real, grown up prayer time.  It’s not that I don’t talk to God.  I ramble on and off with him throughout my whole day.  They are often more like outbursts, though, simply, “Lord help me!”  or “Seriously, God?!”  Or more often these days they take the form of groans and incoherent cries.

But to find a place of stillness, peace, quiet, solitude with God.  That is something that has always eluded me, even before cancer.  As I have gotten farther along on my ADHD journey of self-discovery I have gotten better, sometimes.  Sometimes, when I’m off at a retreat, with no distractions, no phone or laptop to tempt me, and no one else to talk to, then I might be able to sustain conversation with God for oh, 30 seconds or so before my mind wanders.  And more often than not, it wanders onto the stupidest stuff, like how I wonder if I could make my own backsplash on my kitchen and how much would the materials cost?  I feel like such a loser!  30 whole seconds?!  In the most perfect, most conducive of environments, that’s the best I’ve got?!  I think about how we don’t do things in our own strength and I try to give it up to God, asking Him to give me more of Him, less of me.  I ask Him to help me focus, and then I start thinking about tomato sandwiches.

So, back to my morning rhythm.  I like calling it that, a rhythm.  I’ve tried schedules and other than nap schedules, they really don’t work for me.  They’re too rigid.  I’ve also tried rhythms and routines for our whole days, and too often the outside world has invaded, throwing my precious meal plans and weekly activity schedule to the winds.

But mornings, mornings are a good time for me and rhythm.  Mornings are a time that, if I can follow my rhythm, reward me with quiet, peace, and sameness.  In this season of life where every day is different, the early morning is always quiet.  The early morning is a time that I can manage.  And the gift that God rewards me with is an opportunity to hear from Him, an opportunity to simply rest at His feet, in quiet and stillness.  Sometimes neither of us say a whole lot, but amazingly, my mind doesn’t jump in to provide a distraction.  I don’t know what it is about this rhythm for me.  There is nothing magical in it.  It was carefully written, and took into consideration my own needs, the needs of my children, and the constraints of our wonderful, blessed, very large house.  It makes sure that I have lot’s of light in the morning (all of our lightbulbs are daylight balanced CFLs, so each one feels like an extra ray of sunshine in the morning).  My rhythm makes sure that I don’t have SO many dirty dishes by the end of the day that I want to go hide in the closet.  My rhythm makes sure I’ve gotten a shower and some food before go time with the little people.  For whatever reason, and the reason I believe is that God gave it to me, this rhythm carves out an hour just for me.  An hour for me where I can find a place of stillness and a place of peace.

I’m sharing this with you in hopes that it can be an encouragement and perhaps another tool that could allow you to carve out a place to be still in your own life.  I’m sharing this with you today because I believe God wants me to, and I hope it will edify you.  This is NOT a productivity list.  It doesn’t get everything done that needs to be done in my day, in fact it makes no attempt to do that.  But it is a way to manage one small chunk of my day that is actually manageable.  And in managing that, it has given me the gift of stillness with my Father.  I hope my sharing will bless and edify you today.  Peace to you my friends!

The kids

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Last day in LA before heading home

Some of you may already know, but Kevin and I made the decision to leave the kids with some very close family friends in Los Angeles for at least part of his treatment.  “Grammy” Lila and “Grandpa” Paul are truly family to us, though not by blood.  They came into our lives just a little while after Kevin’s mother passed away, and were a welcome additional set of grandparents.  We are so grateful for Kevin’s dad and my parents, but I think anyone would agree that a kid can’t have too many grandparents!  So.  We made the decision that Jude and Evie would do best (and we probably would too) if they had the stability of staying long term in once place while we figured out this next round of treatment.  They’d been bounced around quite a bit these past ten months or so, and hard though it was, we knew that staying in one spot for a while would probably be good for them.

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All ready for Grammy Camp!

Once we flew out to Los Angeles (a last minute trip to visit with family and friends crammed in right before treatment started) we told Jude that he and Evie would be staying while Mommy and Daddy flew back.  It’s a hard conversation to have with a (barely) three year old.  We didn’t really know how much he understood, but we knew it was more than we figured.  We also knew that Jude had picked up on all the exhaustion, sickness, panic, and other energy that had been bouncing around the house for months.  He was nobody’s dummy.  So we decided to sit him down and just tell him as honestly and simply as we could.

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We said, “Jude, Daddy has cancer.  It’s something that makes him sick, and so Mommy and Daddy need to go back home and put him into the hospital so that he can get better.”  We showed him Daddy’s scar, and let him touch it, to give him something tangible to connect with the idea of cancer.  We said, “Jude, since Mommy and Daddy have to go spend some time in the hospital, you and Evie are going to stay with Grammy and Grandpa until Daddy gets better.  You’ll have lot’s of fun, and we will talk to you on the computer every day.  We love you very much and we are going to miss you so much, but we know that you will have a great time doing lot’s of fun things with Grammy and Grandpa.”  We told him the day after we got there, and then casually mentioned it each day as it got closer to the day of our departure.  There were definitely some tears, especially on the day we left, but it’s amazing what the promise of treats and care packages can accomplish (don’t judge us, he’s three!)

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Package from Mommy and Daddy FINALLY arrived!

The first few days after we left, though, he would literally burst into tears whenever we got onto the computer to video-chat.  It didn’t help that he wasn’t feeling well and had been struggling with a sore tooth and a fever.

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Mommy, I miss you AND I don’t feel good!

The third time we chatted, Evie, who’d been fine the whole time, broke down and started crying inconsolably.  There is nothing worse than not being able to reach through the computer screen to comfort your baby.  But, I did what I always do with little ones, I tried distraction, and soon got her laughing as I held up a cup with a straw to the videocamera and encouraged her to drink from it.  I still had to squeeze back my own tears though.

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I wish I could squeeze those cheeks right now!

But it’s been over a week now, and the kids are doing great.  I mean, really great.  And that just means the world to me.  Lila and Paul are getting lot’s of fun time with the kids, and they are also getting the opportunity to connect with some of our other west coast friends and family, something we would never have had the chance to do in a short visit.  Tomorrow they will be going to the Children’s Museum with Kevin’s cousin and her daughter, and last week they went to storytime at the library with some of our friends and their kids.

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Listening with friends

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About to do the hokey pokey at storytime

It means more than anything to me to know that my kids are not just fine, but they are thriving.  They are playing everyday and doing things that they probably wouldn’t be doing here, because I’ve been so exhausted just trying to survive.

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The Vornbrock Splashpad

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Fun in the sun

I am so truly grateful for God giving me the resources and the courage to make the best choice for my kids, even though it was nowhere near the easiest.  Thank you Lila, Paul, our extended LA family, and all of our friends and family here in Atlanta!

The traditions of the church

A few weeks ago, a beautiful gift arrived in the mail from one of my high school teachers, Judy Leavell.

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It’s called a prayer mantle.  There was a card included from her and her husband Ted, and also a card from the Episcopal church she attends.

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Did you read that?  This Prayer Mantle was “soaked in prayer”.


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 As I read through the rest of the card, I instinctively pulled the mantle over my own shoulders, and immediately felt a sense of calming peace and warmth.  I pulled the mantle close to my face and smelled it.  There was a scent that probably came from the combination of the yarn and the hands used to create it.  The scent was calming and serene.  I turned the card over and discovered the Prayer of St. Francis De Sales.  You may remember me writing about it here.  It’s my favorite prayer.

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 When I wrote about the prayer in that last post, it was in regards to the pain I was feeling over the death of a dear friend and neighbor, and how I had given the printed copy to Curt before he died and how it was continuing to give comfort to his girlfriend Maya.  And how all I could think about was that I wanted my prayer back.  Well Ms. Leavell had apparently been reading my blog, and she knew immediately that she was the friend who had given me the copy of the prayer so many years ago.  She wrote me asking for my address and sent me a stack of prayers, so I could have one for myself and some to share with others.  This was during such a difficult time as Kevin and I struggled through that month and it meant so much to me for that little stack of prayers to arrive at our doorstep.

When this prayer mantle arrived, I knew I wanted to share with all of you some of my thoughts about the traditions of the church.  This is by no means meant to be an attack on modern churches, rather an appreciation and awe for the gifts that our church history brings to us.  I didn’t grow up reading many pre-written prayers.  We were told that we could talk to God anytime and anywhere we wanted, with no fancy prayers required, and that is truly a wonderful blessing.  But I think there is wisdom in the words of the great prayers, and I can honestly tell you that there have been many times when I could barely speak, much less form thoughts and words in my head to pray to God, and I have found myself turning to the old prayers and hymns more and more.

At many churches today (our own included) we take communion with crackers and grape juice.  While I believe there is nothing wrong with this, I think of the times that I have been at a church, most often Catholic or Episcopal, where we have taken communion with red wine.  Even at this very moment, I can imagine the feeling of the heat on my chest as the red wine moves down my throat.  When I take communion with wine, I can literally feel the warmth of Christ’s love for us in the blood He shed.  It’s a little uncomfortable too, with a warmness that stays in your belly, and I can try to imagine the pain of His journey to the cross.

There is a chapel here in the hospital.  While there is a sign out front that clearly states it is welcome to worshipers of all faiths, it definitely has a Christian, liturgical bent.  There is a stained glass window, wooden church pews, an altar, and candles.  There is a sense of awe and quietness that comes from entering into a space designed to be sacred.

There is nothing magical in written prayers, prayer shawls, red wine for communion, or chapels and altars.  The scripture tells us that in the moment Christ died, the mantle in the temple was torn in two, so that, by Christ’s death, we were able to enter the sacred space of communion with God wherever and whenever we so desired.  But, there is still something beautiful, something powerful, in those liturgical gifts and traditions.  I believe God gave us imaginations and our five senses, and boy, those old Christians sure knew how to use them.  Thank you God, for all the many ways that you have given us to come into your presence.

And thank you Ms. Leavell for the beautiful prayer mantle.  I hold it and pray with it, I keep it over my shoulders on freezing mornings like this one when the air conditioning won’t turn off, and I lay it over Kevin’s body as he sleeps and I pray for him.


Welcome to Cancer Camp Part 2

If you remember where we left off, I was standing in the parking lot, praying with a cop after locking my keys in my car.

Welcome to Cancer Camp

A few minutes after we were done praying, my friend Candace pulled up and we headed back over to radiology to meet up with Kevin.  There is a whole beautiful story that I will share about Candace and how God brought her into my life, but for now, all you need to know is that she and her husband literally walked this exact same path as us three years ago.  So Candace agreed to spend the first day at the hospital with us to calm my nerves, show me around, and help us get settled in for hospital life.

After Kevin got his PICC line put in, we headed over to see his oncologist, Dr. Lawson.  Then he had blood drawn and x-rays to give them a baseline in case there were any issues during treatment.  Once he was finished, we enjoyed a last hour of freedom with a late brunch at Rise N Dine, where Kevin had his favorite omelette.  

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Around 2:00, we got checked into his room.  While the nurse hooked Kevin up to fluids, Candace and I went down to the cars to get all our “gear.”  You would have laughed if you’d seen us hauling this huge garbage bag filled with a foam bed pad, two rolling suitcases, a lamp, and various bags and accoutrements across Clifton Road, through the emergency room, and up to Tower E.  We bustled around setting things up and getting Kevin and me all settled in.  It’s amazing what a difference the little things make, like an incandescent lamp and some silk flowers.  They completely warm up the room.  We had blanket to toss over the back of the couch and to brighten up Kevin’s bed. 

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Candace had brought posters with some of our favorite verses written out and blank ones for me to decorate.

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 And a big ole basket of snacks.

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Once we felt pretty settled in, Candace prayed with us and headed out.  We sat and looked at each other, wondering what we should do now.  We both decided that a nap sounded like a good idea, so we rested and then read until treatment time.

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The view from our room is pretty lovely.

At 10PM the nurse came in and administered his first dose of IL-2.  At the exact moment that she plugged in the medicine bag, a huge crack of lightning and crash of thunder came through the window.  I remember thinking, I’ve got to quit writing about all this poetic stuff like storms brewing and running into the fire or we’re gonna end up with our house burning down!

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But after that ominous start, we both just dozed off and tried to sleep a little more, wondering what exactly was going to happen.  It all felt a little anti-climactic.  Then an hour later, he woke up with severe chills and nausea.  The nurse gave him a dose of Demerol, which was amazing and got rid of his chills almost immediately.  We got the nausea under control and then fell back asleep.  He ended up pretty much sleeping through the 6AM dose, and we both slept in late (thank you Candace for the sleep masks to block the morning sun!)  We puttered around, read a little, walked laps in the hallway (21 laps equals a mile!) and watched some DVDs.  He did pretty well with his 2PM dose, as well as his next 10PM dose.  So far, the most consistent side effect has been fatigue.

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We are in our third day here and really our second full day of treatment.  He just received his 7th dose this evening, and the side effects are getting worse.  He had more severe chills, which are called rigors, and they cause his entire body to shake.  He had some nausea, and he currently has a low fever that they are trying to get rid of.  His treatment does not suppress his immune system like many other cancer treatments, but they still take fevers very seriously around here.

Mostly, I’ve been puttering around, keeping the room picked up and feeling homey.  When he feels well, I play music and chat with him, when he doesn’t, I try to be quiet so he can sleep.  I’ve not had as much free time as I thought I would because I’ve slept a LOT.  I was embarrassed yesterday morning how late I slept, and felt the need to explain to the nurse that we were still on LA time and recovering.  Silly, I know.  But truly, I’ve been grateful for the opportunity to sleep.  I’ve also taken care of little details like running paperwork over to the clinic for his leave from work, picking up prescriptions, and of course making a starbucks run for Kevin.

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 This is what our room looked like this afternoon when I started writing this post.  We just got through the chills from the evening dose, it’s after midnight, and time for me to go to bed.  Keep Kevin in your thoughts and prayers.  We are so incredibly grateful, no overwhelmed, by the outpouring of love, prayers, words of encouragement, gifts, snacks, visitors, and more from each and every one of you.  Thank you.  Thank you from the bottom of my heart.  All of you who read these words keep me encouraged and give me energy that I can then pour into him.  He reads your comments and cards and verses and is encouraged as well.  Truly, you are all carrying us.  Thank you.

Welcome to Cancer Camp Part 1

I am so behind on writing, but we’ve been so busy or tired that I just had to let it wait.  I’m going to try to catch up, but bear with me, because a lot of these posts will be out of chronological order.  I’ll try to tell when something happened so you can follow, but I want to share with you all about Jude’s birthday, our LA trip, our first few days in the hospital, and several amazing stories of ways that God has reached right down into our world and scooped us up and held us tight.  My ADHD brain wants to try to tell everything either all at once or in perfect order, and I’m realizing that’s just not gonna happen.  So keep in mind folks, this isn’t a soap opera where you tune into the next episode each day, but rather think of our blog as a compilation of remembrances and meditations on our experiences and the ways that God is revealing Himself to us.

First for the most current update:

Kevin is doing AWESOME.  He feels like crap, but of course that was something we expected.  The most prominent side effect though has been fatigue, and luckily he’s in a bed all day, so he’s able to do lot’s of sleeping.  Heck, I’ve been pretty exhausted too, and without kids to take care of or a house to tend to, I’ve been getting a lot of catch up sleep done too!  The nurses and Dr. Lawson (our medical oncologist) keep saying how well he’s doing for the number of doses he’s had.  So far, he’s had six doses.  They will do a maximum of 14 doses, but most people don’t do that many.  They warned us that Thursday will probably be the worst day, but I am praying that he will continue feeling okay, just really tired.  He does tend to get chills and rigors (extreme chills accompanied by shaking) shortly after many of the doses, but they have a drug that immediately makes them go away.  He had nausea and rigors after the very first treatment, but hasn’t had much nausea since then.  My biggest prayer for this week has been for the treatment to be effective in teaching his body’s immune system to kill the cancer cells and that it would miraculously at the same time not be too difficult for him to tolerate.

Up until this point, we had really felt like the doctors had downplayed the severity of most treatments.  They suggested the radiation wouldn’t be too bad, would make him a little tired, a little sun-burned feeling, etc.  It was horrible and he was in pain and exhausted.  Positively exhausted.  The same thing was said for the interferon… hard, but not too bad, everybody’s different, etc.  He had the worst side effects possible.  So when they told us that IL-2 is really hard on everybody, we were braced for the worst.  But yesterday he said to me, “You know, the interferon was worse than this.”  And I just cried tears of joy, because that had been my prayer.  He has been through so much, and it just sucks for him to have to go through so much more, without even knowing if it will work.

So that’s Kevin’s basic update.  We will have a few more days of treatment, possibly checking out on Friday or Saturday, then two weeks of rest and recovery and home, then back in for another one week regimen.  After two more weeks of rest, he will have scans to see if there has been a response to the treatment.  If it has, he will undergo two more rounds of one week in, two weeks at home to complete the treatment.  If the cancer has not shown a response, then we will stop treatment and move to plan c, d, e, or whatever else.  We found out last night that he is positive for a genetic mutation called B-Raf, which about half of all melanoma patients have, and in short, there are many many options for treatment for folks with that mutation.  I’ll go into more detail in a separate post.

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Sunday morning, we packed our bags and said a teary goodbye to our kids.  We had been in Los Angeles for a whirlwind, last minute trip to visit with friends and family, and Jude and Evie were going to stay with their West Coast grandparents (Paul and Lila) for a little while.  We stepped on a plane and, for the first time ever, I was not eager to get to where I was going.  By the time we got off the plane and back to our house in Atlanta, it was 8:45 in the evening.  We were exhausted from pushing through to see as many folks as possible during our incredibly short trip.  Lot’s of socializing and not a lot of sleep and lot’s of emotional chatter left us definitely NOT in a state of preparation to do battle the next morning.  At 9PM, friends and family arrived to sit with us for a time of prayer and scripture reading.  We felt energized but still more than a little bit terrified.  I, the social butterfly who could talk forever, sent everybody home and with the help of my sister and a couple of other friends, quickly unpacked from our trip and then packed for our one week stay at “Hotel Emory” or as I am now affectionately calling it, Cancer Camp.  We set our alarms for 5AM, and then tried our best to sleep.  I don’t think either of us really did.

We pulled up to the hospital at 5:45 and looked at each other grimly.  “Well, here we go, I guess.”  We parked the car, leaving all of our luggage and accoutrements, and wandered the hospital corridors until we found Radiology.  We had been told to report at 6AM.  We had also been told there would be a LOT of waiting around on the first day.  Once they brought Kevin back to put in his PICC line, I knew it would be a little while before I saw him again, so I went back to the car to grab my laptop charger and rearrange a few things in my bag.  And somehow, I managed to lock both of our keys in the car.

Well, crap.

I stood there looking at the wrong car key in my hand, wondering why I had shut the trunk lid with the other keys inside before opening the car door.  I stood there thinking, seriously?  Seriously, is this my life?  And then I thought, seriously, is THIS what is going to get me to cry today?  No way, Satan, you do NOT get that kind of satisfaction.  With nothing else to be done about it now, I headed back to find Kevin.  On my way, I passed the receptionist at the information desk.  I had seen her smiling face every time we had come here since our first visit last October.  I distinctly remember seeing her then.  I also remember that first day, how we had walked into the Cancer Center and seen person after person with the telltale signs of cancer, beautiful bald heads swathed in silk scarves, oxygen tanks, person after person reading books on kindles and ipads, because they were doing a LOT of sitting around.  I remember squeezing back tears, because it was really starting to sink in that Kevin had cancer, like, for real cancer.  Like, cancer that could kill a person cancer.  I remember thinking that we didn’t really belong there, this was “just” skin cancer.  And I remember how I felt as we walked out of our appointment and past that same receptionist, now knowing that yes, he did belong here, and yes, this was the big leagues.

Anyway, as I walked past her Monday morning, thinking back on how long this journey had already been, I realized that I didn’t even know her name.  Something in me thought to myself, “Self, you should go find out her name.”  And so I did.  I walked back down two flights of stairs and over to her desk and said, “I have seen you at least once a week for the last 10 months, and I don’t even know your name.  My name’s Rachel.”  And she told me that her name was Ann.  And then, for any of you who know me, it will be no surprise to you that I started chatting with Ann.  I shared a little about the thoughts I’d had about her, how everything else had changed in our world, but that her quiet presence was always there.  She is a slightly older woman, maybe 70s, with a quiet grace about her.  She’s not the extroverted, cheerful greeter who calls out to you, but rather the one with the quiet smile that let’s you know she is here if you need her.

And as we chatted, I mentioned what had just happened to my car.  And wouldn’t you know it, she immediately said that the Emory Campus Police could come right over and get me into my car!

Now, Honestly I am one of the last people who would say that God is in every tiny detail, and that he “gave” me this certain parking spot, etc.  But I truly believe that God laid it on my heart right then as I passed by Ann, to go and ask her name.  God knew me so well that the rest of my story would come out… it always does.  And that through sweet Ann, even my smallest needs would be met.

But there’s more!

So I went over to my car to wait for the campus police.  Once the cop arrived and verified I was the car’s owner, he gathered his car “break-in” kit.  But there was a piece missing, so he had to radio for another officer to drive over.  While we waited, of course we started chatting, and I shared a little of our story.  After getting me into the car, he cautiously said, “I hope this won’t sound weird, but I lead a men’s Bible study, and I would love to have our group pray for you and your husband.  Do you mind my sharing with them?”  Choking back tears, I thanked him and asked if he could pray for us right now, because I was sure feeling like I could use it.  So we stood in the parking lot, a uniformed police officer and I, amidst the morning rush of cars, bowed our heads, and prayed.

Lord, I now know, I truly believe, that even in the littlest moments, the tiniest of details, You are active and involved.  And I also know that Satan has no power over us; what he would use for evil, You constantly turn back into the most beautiful reminders of your unceasing care for us, even the tiniest of our needs.

Rest for my soul

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It’s 5AM in Los Angeles, and I pull my tired body out of bed.  I slept in yesterday morning only to feel tired and behind all day.  For those who don’t know, Kevin and I made a last minute trip with the kids to Los Angeles before we check into the hospital this Monday morning to start treatment.  We flew out to reconnect with friends and family (Kevin grew up here and I lived here for about ten years) and also to drop the kids off.  They will be staying with Lila and Paul for the next couple of weeks until we see how treatment is going.  I am grateful that the trip hasn’t been a mad rush of driving from one gathering to another, but it has still been pretty full and also pretty emotional.  Both of us know the reason we made this trip, and though we don’t say it out loud very much, we both feel a sense of urgency to see as many people as we can and to hang tight to the moments we have out here.  And I’ll tell you, that is exhausting.

Which is exactly why I’m up at 5AM writing a blog post.

I’m sure some of you think I’m completely insane.

But I’ve figured out something about myself, and it’s NOT that I’m a morning person.  I’m probably the last person you’d find choosing to get up early in the morning on her own.  I love to sleep.  I need sleep.  I have some friends with new babies I’ve visited out here and found myself discussing sleep (as always happens because it seems so elusive to new mamas).  I found myself pondering why I got my children sleeping through the night so much earlier than many.  It really had nothing to do with amazing parenting chops or being a baby whisperer, or anything else.  For me it came down to the simple fact that I could not survive on the amount of sleep I’d been getting and finding a way to get that sleep again took more precedence than any single other thing in my life.  I pursued it with a focus and energy I’ve rarely seen in myself at any other time in life.

So back to why I’m up so early.  I’m tired, yes.  My body is always tired these days, even if I’ve slept.  Kevin’s is too, even though the effects of the interferon have mostly worn off.

We are in the middle of a marathon that we did not train for.  And we honestly have no idea if we are in mile 10, mile 25, or mile 2.  Can you imagine getting up this morning and decided to just start running for 26 miles straight?  And you couldn’t stop no matter how hard you wanted to?  And oh P.S. along the way, you never saw a single mile marker letting you know how much of the journey you had already accomplished.  You only knew that somehow, no matter how much your legs burned, no matter how much you were gasping for air or water, you would keep running, you could keep running, God would even carry you for a lap or two as you moved along.

So yeah, we’re tired.

But my heart, my spirit is even more weary.  And so I steal away early in the mornings to find a few hours of quiet and solitude.  I almost always go outside when I get up early.  I fix a cup of coffee, grab a book or my laptop, and sit outside to enjoy the quiet coolness as the day slowly makes its way over the horizon.  And my soul gains rest.

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It’s only 5:30 now, and there is already so much more light than there was at five.  I am reminded of how quickly time passes, and wish I could shove the sun back down behind the mountains, to pretend that this isn’t really our life, that we aren’t really taking a whirlwind trip to see friends and family because well, this might be the last chance we get.


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We are staying at Paul and Lila’s house.  They live on a beautiful piece of land in a secluded corner of the San Fernando Valley.  It’s not what you think of when you think of LA.  I look out from my chair and take in the peaceful view of flowers in bloom and oranges hanging from the tree.

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Lila had set up a cozy chair that I retreat to most mornings before the children awake and the rest of the busyness of the day begins to invade.

I listen to the birds.  Oh there are so many birds.

Their cozy chirps and squawks make me think of Matthew 6:26 and the birds of the air who do not sow or reap or store away in barns, yet our Heavenly Father feeds them.

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I have peace.

And I don’t feel quite so tired.

Today we will visit with more friends, and yesterday we had an all day open house with a steady stream of loved ones and well wishers.  It was wonderful and exhausting all at the same time.  You know it’s bad when the extrovert says she’s tired and needs a little quiet time.  But we are also both treasuring this time.  Tomorrow we will pack our bags and kiss our children one last time and step on a plane back to reality.

And at 5:00 Monday morning, with one hour left before we are to report for battle, I will sneak out to our porch and gain rest for my soul.