Tag Archives: leukemia

In Another Life, 46.

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A few months ago, I wrote a piece about the circular nature of grief (A Tuesday Kind of Miracle).  When we lose someone, the path through grief is a looping line, not a straight one.  As the years pass, the loops become smaller and spaced further apart.  I ran headlong into one of those loops today and that’s how I found myself sitting at my desk sobbing into a Kleenex…all because of a typo on some paperwork.  Or maybe it wasn’t a typo.  In some world, it might be true.

It’s been eight years since Richard died.  I’ve slogged through the months and months of estate paperwork and had it all settled.  I hadn’t looked at that brown accordion file in years.  Nevertheless, at the end of 2012, I got a big envelope from the university where he had taught.  I inherited one of his retirement accounts, but I didn’t bother to open the envelope because all that was SETTLED.  I got another envelope…put it in same dusty stack.  (I know, I know, I know)  He ended his career as a professor of finance, so both of us had great retirement plans and aggressive commitments to our savings.  So I already had and have “My Own Money.”  When this account came to me after his death, I kept it separate for tax purposes and viewed it as my super duper safety net, a sad windfall.  Whenever the financial news got me scared, or I had a bad day at work, I would pull up that account online and take a deep breath.  That money was an extra egg in the nest.

(TAKE HEED:  If you ever inherit a retirement account, DO NOT roll it in with your own funds.  If you ever have to take money out in the event of an emergency, you can withdraw from the inherited account at a much lower penalty rate.)  (This message brought to you by the ghost of Richard A. Grayson, MBA, PhD.)  ‘

Well, one day after the beginning of this year, I was feeling kind of blue so I logged in to the account to cheer myself up.  The balance was $0.00.  GACK.  The image of those big white envelopes from the university came racing back to mind  Might have been a good idea to look in there!  I’ve had other estate related glitches (like the letter from the IRS that said I owed $86,543.78…that was a sphincter release notification).  I calmed myself down pretty quickly and opened the damn envelopes.  Yep, the university had switched investment management companies and I was going to have to do the paperwork ALL OVER AGAIN.

Damn it.

It took me a month to call Investor Relations.  Another month to fill out the Beneficiary forms.  Another month before I made it to the bank for the fancy Medallion certification stamp (who knew?).  Seriously, I haaaaaaate this kind of paperwork, even if it puts me back in my safety net.  ARGH.  Hate it.  Hate it hate it hatey hatecakes.

Now it’s been a couple of weeks since I mailed all that stamped and certified stuff in…and I get another white envelope in the mail.  I took it out today and opened it up to read that they need a copy of his death certificate.  Sigh.  While I was bracing myself to open up the big brown accordion file to find a copy of that clinical green document with Dr. Marrano’s signature and all those dates and codes and finality, I skimmed over the letter from the investment company.  I was listed as the primary account holder, with all my information as I had entered it on the forms.  Richard was listed as the secondary account holder.  And for some unknown reason, the form listed his age:  46.

He died at 38.  He’s never going to be 46.  Not in this world.

My late husband is growing older.

My late husband is growing older.

Thus the sobbing.  46.

For the first few months, maybe years after he died, I sometimes thought I caught a glimpse of him in crowds.  He was distinctive looking–5′ 4″ tall with reddish hair, an Irish tan, broad shoulders and a narrow skier’s butt.  His body was  beautifully proportioned and compact.  When we hugged, he fit right under my chin.  So if I was in a crowd and saw out of the corner of my eye a body shaped like that or a russet haired man with a bouncy step…I kept looking, out of the corner of my eye, and I pretended that it was him.  It was a way of hanging on to the notion that he wasn’t really dead, just NOT HERE.  I don’t believe in a heaven where this that is “I” and that that is “you” remain.  I believe more in the conservation of energy and the way our selves remain part of the great equation of the universe but not in any distinct being…but it will never be mine to know.  I do know that when you have to wake up one day into a world that no longer is home to your beloved, it’s easy to pick out pieces of them in a crowd and let your brain relax into the fantasy that they are still somewhere nearby.

But to think of him as 46?  Right there, in black and white on a form.  Stomach punch.

I once found myself on a train across Canada with the Cowboy Junkies and some of their favorite singers and songwriters.  One of them was Fred Eaglesmith–his song “Crowds” speaks to me when I think about Richard being 46, somewhere:

So I look for you in crowds
In train stations and bus stops
On sidewalks in the middle of the night
When I go driving by
Little churchyards on Saturdays
I check to see if you might be the bride
Hope you’re happy now
I still look for you in crowds
 

Forty six.  In another place, maybe, another life.  In a parallel universe, he is 46.  And maybe now and then, he misses me too.

It’s All One Life

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paddlewheel boat Baltimore

Black Eyed Susan in Baltimore’s Inner Harbor

One sunny Sunday afternoon in November of 2004, Richard and I took a walk down to Fell’s Point in Baltimore.  We sat on a bench by the harbor and watched the gulls dip and dive around the trash cans.  A bright white paddlewheel boat–The Black Eyed Susan–rocked against the dock.  I told him how the flower, black eyed Susan, always made me think of Van Morisson’s “Brown Eyed Girl.” I sang the chorus.

A pack of Cub Scouts climbed up to the bridge to ring the brass bell.  The sun was warm but weak.  I was glad for my jacket.   The boys rang the bell then chased each other down the ladder to the deck then the dock then across the brick courtyard behind us.  The sunlight sparkled off the diamond engagement ring that Richard had given me a few months before.  His grandfather Jack had given it to his grandmother Sadie in 1927 and she had worn it for 75 years.  Now he had given it to me as a sign of his trust in our commitment to each other.  We held hands and I remember thinking, “I’m really happy, right now.  Right here.”

Then a phrase entered my mind and it stayed with me for years:  “It’s all one life.”  It’s all one life.

Here’s the detail that’s missing from the scene I’ve described above.  Richard was feeling pretty good that day after his third round of chemo, but it hadn’t put him into remission.  He told me a half-truth that week, so as not to break my heart with disappointment and fear.  He said his doctors were calling it a “partial remission.”  It didn’t take.

We left the safe confines of the guest house on Johns Hopkins campus to walk down the hill to the harbor on a sunny day.  It was the first walk we had taken together outside in months.  I worried most of the way that his energy wouldn’t hold out or that we might need to find a cab to bring us back up the hill.  For years I had chased him all over Europe on our adventures together but now I was shortening my steps and slowing my pace so he didn’t tire too quickly.

Sitting there in the sun that day, I had a sense of wholeness about the whole situation.  For once, I wasn’t piecing it apart into the parts I accepted–the love we felt for each other, the joy of rambunctious kids, the autumn sun, the promise of a boat–and the parts I fought against–leukemia, chemo, guest houses, unknowing, weakness, change.  I had space in my heart and my mind in that moment for all of it.  It’s all one life.

Before that day, the mantra “it is what it is” had been helpful, but I could only use it as an antidote for each piece of information, each separate challenge that came our way.  It was a one thing at a time kind of mantra.  “It’s all one life” was a rare expression of wholeness and acceptance in that chaotic time, when every day, hour or minute might bring with it some blow to our life together.

After he died, I wondered, “If you could do it all over again, would you?”  My answer was yes.  Even with the horror of that year and the emptiness after he was gone, I wouldn’t have traded the good times in exchange for missing the bad.  To quote Garth Brooks, “I could have missed the pain, but I’d have had to miss the dance.”  Or with Fartbuster, after our divorce….I asked myself if I would have been better off never having married him?  These are impossible questions because changing one thread of my life would have put me somewhere else and I wouldn’t have heard the Cub Scouts ringing the bell aboard the Black Eyed Susan as Sadie’s diamond sparkled in the sun.  Even if my beloved was dying beside me.  

Domino Sugar Fell's Point

“Domino Sugar Love” by Andreas Kollegger via Creative Commons license

It’s all one life.  I couldn’t have been the mother who looked into my first born’s blinking eyes and whispered, “Hey!  I’ve waited my whole life to meet you!” if I hadn’t been the woman who brushed his eyes closed after they had left this world to look upon some other.   It’s all one life.  And I’m glad it’s mine.   

“Have you thought about what you want to do with the house?”

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882452_10200322608460867_1820283952_oThis is an essay I wrote last summer for my Leukemia/Lymphoma Society website.  It’s been stomach bug weekend at our house…so not much time for writing.  Today, Carlos got stuck under the side table in the living room and started yelling “Tuck!  Tuck!”  I thought he was saying “stuck” but he was trying to get this truck.  He loves that toy, probably because it has old fashioned rusty metal and sharp corners.  Enjoy!  

“Have you thought about what you want to do with the house?”

That’s the question Richard asked me, one snowy day in the end of February 2005. We were sitting by the window of his room in the Sidney Kimmel Cancer Center. Outside, the low gray sky was filled with huge snowflakes, cartoonish in their size and pure white color. The kind of snow that makes a Georgia girl stare. Richard was writing his last will and testament. His mother was there, relaying changes to the lawyer, and I was trying to stay out of it. But he looked up at me and asked, “Have you thought about what you want to do with the house?” I couldn’t say anything. I couldn’t find words.

Of course I had thought about what I wanted to do with the house. We had made lots of plans. I wanted to see the azaleas that we had planted spring back from that severe pruning he had given them in May. I wanted to find a rug that fit the dining room because the one we bought at that auction was two inches too long. I wanted to take out that cherry tree that was crowding the hemlock, even though it bothered my heart to cut down a cherry tree. I wanted to sit on the deck together, covered in sweat and dirt and contentment and look out over what we had made of this house. I wanted to get rid of that fruit wallpaper in the kitchen. I wanted, I wanted, I wanted.

I had spent nine months watching leukemia take Richard from me—cell by cell, ounce by ounce. He was leaving. Now it wanted my home, too? Did I want to keep our house and rattle around in the memories? Did I want to sell it and start over somewhere else? Did I want to decide now with him or decide later…alone?

He waited for my answer. I fluttered my hands around and made a choking kind of sound when I tried to say all the words and none of the words. I don’t even remember if I made a sentence. He understood what I meant. I’m not sure I knew what I meant, but he got it.

Richard and I stood on that too-big Persian rug with its Tree of Life motif when we married in the backyard of our home. The azaleas bloomed a few weeks after he died. He had been right—the pruning made them flourish. Months later, my brother cut down the cherry tree while I hid inside the house and the hemlock thrives now that it has more room to grow. I sit on the deck sometimes and remember and it is sweet.

Now the wallpaper has fallen! G and I have spent a couple of weeks working on the kitchen—stripping the walls, patching, spackling, scrubbing. The other day, some magic people arrived in a big truck and swapped out the countertops, put in a sleek cook top and installed a sink that gleams. After they left, that question popped into my head and has been dogging me for days—“Have you thought about what you want to do with the house?”

I certainly never thought, on that snowy and empty day, that I would do THIS with the house. I hadn’t thought that every bedroom would be filled with sleeping kids. I hadn’t thought that the living room would look like a Fisher Price showroom after an attack by Godzilla. I hadn’t thought about how the downstairs is perfect for a teenager suite. I hadn’t thought about a gingko for the backyard, but G gave me one for my 40th birthday. I hadn’t thought I would have a son born on a silent, snowy morning.

Richard gave me many gifts, but the dearest one is my home. It was our home, then it was my home, now it is my family’s home. His picture is in the living room. Shells he picked up on the beach in Panama when he was a boy line the bathroom window. G found a gizmo when we were working in the kitchen and we figured out that it was a wonton dumpling press and it must have belonged to Richard, who could make a mean pot sticker. Carlos has discovered Richard’s old Tonka fire truck. He flips it upside down and spins the wheels around and around.  Around and around and around.

Love Is Not All

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The early morning hours of March 16th were some of the hardest, loneliest I’ve ever faced.  I’m not going to share exactly what was happening–that’s too intimate–but suffice to say that I was trying to keep my beloved on the life raft in the midst of a stormy sea.

Richard was restless and not in this reality.  I talked him back to this world several times and tried to get him to sleep.  I thought he would be safest if he stayed in our bed.  The bed became like a life raft, a small safe square.  I was bone weary, but slept diagonally across the bed so that I could feel if he moved.  I slept with my hand holding his wrist and the instant my hand grasped his, I remembered two things:  Theodore Gericault’s painting, “The Raft of the Medusa”:

Jean Louis Théodore Géricault, "The Raft of the Medusa" 1818, via Wikimedia Commons

Jean Louis Théodore Géricault, “The Raft of the Medusa” 1818, via Wikimedia Commons

and Edna St. Vincent Millay’s “Sonnet XXX”:

Love is not all: it is not meat nor drink
Nor slumber nor a roof against the rain;
Nor yet a floating spar to men that sink
And rise and sink and rise and sink again;
Love can not fill the thickened lung with breath,
Nor clean the blood, nor set the fractured bone;
Yet many a man is making friends with death
Even as I speak, for lack of love alone.
It well may be that in a difficult hour,
Pinned down by pain and moaning for release,
Or nagged by want past resolution’s power,
I might be driven to sell your love for peace,
Or trade the memory of this night for food.
It well may be. I do not think I would.

I recalled the painting because of its despair, panic, confusion.  It was in one of the art books I had as a small child and the image has never left me.  When I got to college and took art history, I learned the story behind the scene.  One hundred and fifty desperate people, clinging to a rickety raft after their ship was lost off Mauritania.  They endured two weeks in the open ocean and faced starvation and madness.  Some resorted to cannibalism.  Only fourteen survived.  Even as a child looking at Gericault’s painting, I understood the horror of the situation.  My college professor was the first one to point out to me the tiny ship on the horizon.  Every fiber of effort on the raft is focused on reaching for the hope of the distant ship.  A life raft, filled with death and madness all around, but a single dot of hope so far out on the horizon.  This is the image that came to my mind as I clung to Richard’s wrist, in the dark, on our life raft.

Along with the image of the raft came Millay’s line “Nor yet a floating spar to men that sink/And rise and sink and rise and sink again.” Just a few weeks earlier, I had been thumbing through a poetry anthology in search of something to read at our wedding.  This poem was about love in its most steadfast form, but I couldn’t bring myself to say the line about “Love can not fill the thickened lung with breath,/Nor clean the blood.”  I couldn’t say it.  We had tried everything to clean his blood and every science betrayed us.  But the poem came back to me that night with its image of the spar, the wood we drowning folks cling to in order to rise, even though we may sink again.

Loving someone is hard.  Loving someone as they die is hard.  Some people walk away–“I might be driven to sell your love for peace.”  I did not.  I would not trade the memory of that night.  I know I would not.

The Kindness of Strangers

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The story of Samantha Manns’ has been making big news this week.  She is an 18-yr-old woman who has committed to performing 89 acts of kindness in memory of her grandmother, who died at the age of 89.  There’s even a Facebook page where she shares the story of each of the kindnesses and how they affected the recipient and her.  I think this is an absolutely lovely idea!

After Richard died, I thought about ways to “pay back” some of the kindesses that we had received along the cancer journey.  One kindness that jumped out at me, thanks to his leukemia diagnosis, was the overwhelming amount of blood and platelet transfusions that were always there for him when he needed them.  By my calculations, he had received 156 pints.  I spoke to the local Red Cross staff and they appreciated hearing a “thank you for what you do,” but the debt was still there to all those people who had donated blood.  Richard didn’t believe in debt, so I decided to find a way to pay back all those pints.  The hospital where I work does regular blood drives.  I talked to the organizers and we agreed to have an “honorary” blood drive where you could give your pint in honor of someone you knew who had received blood products.  It was a heart-warming success!  Each donor filled out a heart that dedicated their blood in honor of their loved one.  The Calkins gave blood in memory of Abraham, many friends gave in memory of Richard.  My boss had never donated blood before, but rolled up his sleeve for this event.  It turned out that he was O negative, the universal donor…and he’s given GALLONS since then.  The 156 pints of blood that Richard had used in 10 months were paid off, back in the bank and ready for the next person who needed them.

Richard had a gift for small kindnesses and great kindness.  He lived the Scout Oath of helping all people at all times.  That’s how we met! Tomorrow is the eighth anniversary of his last day.   Some measure of kindness left the world along with him and I want to make sure there is enough in the bank when people need it.  Look around today for a kindness that is yours to give.  Help someone find their way.  Give an encouraging word to a stressed out mom.  Thank a stranger for the work they do.  Offer your jumper cables.  Then tell us about it here in the comments so we can all share in the joy!

“A good deed is never lost;

he who sows courtesy reaps friendship,

and he who plants kindness gathers love.”

–St Basil

Jamie painting

The Artist at Our Wedding

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Jamie paintingThere are 3 watercolors hanging in my dining room, each signed “Jamie Calkin March 5, 2005.”  The first is a meditative scene under the white tent.  Just two wrought iron chairs sitting side by side atop a Persian rug, the river flowing in the background, everything poised for the wedding to begin.  The second depicts the wedding ceremony itself, the same tent now filled with about 30 friends and family members, bride and groom seated together, a pair of massive tulip poplars soaring above the scene.  The last painting is a scene from the reception, our blue kayak buoyed by white balloons, drifting around the pool while a cellist plays.

After Richard’s doctors told him that they could give him no further treatments, he surprised us all when he said, “I want to go home and I want to marry Ashley.”  Oh.  OH!  I told my sister, my stepmother and a couple of dear friends and damn if they didn’t manage to put together what we ended up hailing as “A Wedding In a Week.”  I mean, BOW DOWN, wedding gods, these ladies had it nailed (and one of them is only a lady in drag shows!).  My friend, Andrea, called me the day after Richard announced that we were getting married and said, “I only need to know two things–what flavor cake do you like and do you want to wear a tiara?”  Everything else?  HANDLED.  Those days of planning something happy were a magical respite from the quiet panic of leaving the hospital and flying home…well, to die.  We knew it but we weren’t saying it so let’s get married in the meantime.  Andrea even gave me a pair of rose-colored glasses to wear to the spa on the day before the wedding.  She understood–her mother had died when she was only 20.

We had swanky catering, a string trio, an Episcopal priest, wedding finery, a Cecelia Villaveces cake…all in a week.  The clerk of court even brought the license to the house with a witness so Richard wouldn’t have to go out.  All because someone knew someone who knew someone who loved us.  Magic.

When my friend, Katie Calkin, said, “Jamie wants to give you a painting for your wedding,” I was so touched.  I thought she meant that we would send him a photograph from the wedding and he would paint it for us.  But Jamie works in the moment, in plein air, with his watercolor kit, a stack of paper and wide open space.  So on the morning of March 5, 2005, when I peeked out the bedroom window to check on the hubbub in the backyard, I saw Jamie sitting in the grass, leaning against a crepe myrtle with his kit spread out around him.  That was the first moment that brought me to tears that day.  Why?  Because Jamie was so happy.  He radiated joy, an artist in his element, on a sunny day, doing what he loves best.

Katie and I had known each other through work for a couple of years, but the first time I met Jamie was at a planning meeting for a quilt project in memory of their son, Abraham.  Abraham was born with a heart problem.  He spent his entire brief life in intensive care, swaddled in love, but his heart just wasn’t strong enough. In the aftermath of his loss, the people who had loved him wanted to mark his life.  It turned out that several of the Calkins’ friends were quilters, so they hatched a plan to honor Abraham and ease the fretful hours of other parents with children in the NICU.  They lined up volunteers with the goal of making one crib-sized quilt for each day of Abraham’s life.  The quilts would be donated to the neo-natal intensive care units where Abraham had spent his life.  All they needed was 50+ people to make a quilt.  Never one to let sensibility overcome my rampant enthusiasm, I signed up to make a quilt right away…even though I didn’t know how to sew.

I learned to sew, along with a few others, and I made a rail fence pattern with fish called “Twinkle, Twinkle, Little Starfish.”  Katie made a quilt for her son.  Jamie made a quilt with dinosaurs.  Abraham’s grandparents made quilts.  Strangers made quilts and Abraham’s Aunties made quilts.  When the project was finished, the quilts were displayed in the hospital lobby for one day and we all got to marvel at the beauty of what love for this fragile boy had brought into the world.  Taking heartache and turning it into kindness.  The first time I saw Jamie, he was hollow and it seeped out of his eyes.  The morning of the quilt show, I saw him smile.  The morning of our wedding, I saw him at peace with the world.

Seeing Jamie there in the sunlight on my wedding day gave me hope.  Not that Richard was going to get better.  Not that we would live a long and happy life together.  It simply gave me hope that I would make it out the other side.  There was Jamie, like a messenger from some other day in the future, when I might be able to sit in the sun and feel at peace with the world.  wedding march

He and I exchanged letters that night that crossed in the mail.  I thanked Jamie for giving me hope that I could be happy again.  He thanked us for including him in the day and confided that he had felt Abraham there during the ceremony.  I hope he was there and I hope he had two pieces of cake.

Katie was one of the first people I talked to after Richard died.  I told her that he had been thinking of Bermuda, a place where we had been so happy.  I said, “Abraham would be three now–old enough to learn how to swim.  I hope he and Richard are at the beach today.”

jamie pool painting

I’ve been thinking about Katie, Abraham and Jamie a lot this week because I stumbled upon a blog called “Being Everlee’s Mom.”  It’s an exquisitely written record of fresh heartbreak.  The author and her husband lost their infant daughter, Everlee, last month.  I’m so glad that she’s writing.  The only way out of grief is through.  It helps when you can look around and see other people who are a little farther down the road.  They turn back and wave to you and say, “This way.  Follow my voice.”

Please visit Jamie’s website to see more of his work here.

Expiration Dates

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It’s finally March, my least favorite month of the year.   Really, it’s just one day–March 16th–that puts the stink on the whole month.  March 5th has its pleasant memories from our wedding, if I don’t look at pictures and see how sick Richard was by that day.  March 6th was the anniversary of when we met (more on that later in the week).  But there’s March 16th, 6:25pm, casting a pall on the whole month.

I was in the grocery store this evening.  Reached into the milk case to get two gallons for my slurpy baby boy…and I was stopped in my tracks by the stamp on the jugs.  March 16.  Expiration date.

milk jugs

The woman next to me was curious about why I was photographing the milk cooler.

Two years ago, my friend Elizabeth and I were pregnant at the same time.  She posted on Facebook one night:  “Y’all!  I just bought milk with an expiration date AFTER my due date!”

I totally got what she meant.  Something as real and institutional as the mandatory expiration date on milk makes the hazy future seem credible, like it has to happen if you’ve already got milk.  The day WILL come when you’ll have a baby and milk in the fridge!

Part of the endgame of cancer is not knowing what each day will bring.  Richard refused to accept that he was dying.  If there was a .000001% chance of living, he seized it and ignored the rest.  His lead doctor at Johns Hopkins, Dr. Judith Karp, is a world class leukemia specialist and also a kindly grandmother.  When it was time for the family meeting with Richard, when all of his doctors and nurses gathered in the room so that the doctors could tell him that there were no further treatments for him, Dr. Karp sat on the edge of his bed and put her hand on his knee.  After so much time in hospitals, I knew the significance of that–doctors don’t sit on the bed and touch the patient like that on regular rounds.  She was doing that because he wasn’t going to be a patient any longer.  Even in the face of all that NO, Richard said, “If I go home and beat this fungal infection, can I come back?”  Dr. Karp took a slow breath then said, “Absolutely!” as she patted his knee.  Even she got choked up.  The only thing she could give him at that moment was hope in a hopeless situation.  He insisted on hope and she made space for it.  I will always respect her for that.  That was simple kindness.

So what’s my point?  I don’t know.  Even milk can’t stop the inevitable?  Something like that.

When we came home from Hopkins, I honestly didn’t know if it would be for three days or three months.  It turned out to be three weeks.  Richard kept things from me at the end–he didn’t burden his family with the hopeless messages that his doctors were giving him.  I found out how hopeless things were when I called his local doctor on a Thursday morning and the doctor said, “I told him on Monday that it was time to call hospice.”   Oh.  OK.  Thank you.  I hung up the phone and sank down the wall.

He died that night.  In March.

We make so much of the firsts–the day we’re born, first steps, first birthdays, first day of school, first kiss, first love, first job, first home–because the lasts are so hard to see coming.