Tag Archives: leukemia

In Baltimore, You Hear What You Expect to Hear

file541344101316The events unfolding in Baltimore–whether you call it a riot or an uprising–put me in mind of a lesson I learned in Baltimore eleven years ago on a broiling hot summer day when my heart and mind throbbed with fear.

There wasn’t much left of my rational brain at that point. Richard had been diagnosed with leukemia on June 30. He got blood and platelets the next day at the hospital where I work–just enough to get him healthy enough to fly. He took off that evening for Baltimore, for Johns Hopkins Hospital, where his treatment would begin as soon as possible.

I stayed behind for a couple of days to batten down the hatches and pack us both some clean underwear. I tied up loose ends at work, at home. I explained what was going on to everyone who needed to know, then I rushed north to Baltimore.

While Richard had been teaching at Loyola in Baltimore, I had fallen in love with the city. We rode water taxis across the Inner Harbor, dined along Second Street, walked the paths of Poe. So it wasn’t my first time in Baltimore by any means, but I didn’t know anything about the neighborhoods around Hopkins. Well, I knew one thing–“Don’t go there. It’s not safe.”

Rockwell House. My throat closes up just looking at the door.

Rockwell House. My throat closes up just looking at the door.

But now, in the world of leukemia, Johns Hopkins felt like an island of hope, the one place Richard might be safe again. His parents had booked us a small caregiver apartment at the Joanne Rockwell House, right on the edge of campus. Somewhere around Washington and Jefferson Streets. I tried to find it on a map this morning, but the building isn’t there anymore–replaced by newer digs.

A flight, a ride from BWI, dropping my things at Rockwell House, then hurrying to the hospital with my heart in my throat. Then the first slow hours of waiting in a room with Richard, the first few of the hundreds we would spend like that over the next 10 months. Waiting for a miracle in the worst neighborhood in Baltimore.

file000137091442On his advice, I left before sundown, so I could make it back to Rockwell House. Luckily, Richard’s mom had left some food in the minifridge. The only store visible from my window was a corner liquor store, plastered with booze posters.  A barren parking lot, owned by the hospital, gray buildings shuttered with plywood, and the liquor store. I felt like a traveler in a ship, looking out my porthole at a strange land.

Eight o’clock, nine o’clock. The summer sky grew dark. After so many days of panic and chaos, the time had come to be still. I stretched out on the narrow twin bed under the window and tried to let my brain and body catch up to each other.

Then just under the window, a few feet from my head, I heard several loud cracks. Someone shouted over the sound of POP POP POP POP from the parking lot below me.

This middle class white lady HIT THE FLOOR. With a quickness. I didn’t even watch The Wire at the time, but I knew what happened when you mixed a Baltimore liquor store, summer heat, darkness and shouting. I slithered across the floor then reached up to kill the overhead light. The cracking and shouting continued. I lay panting in fear on the linoleum floor and waited for the sounds of sirens. None came. I watched the window and waited for it to explode from a stray bullet.

Then a strange SCREEEEEEEECH cut the air, followed by more popping, but slower now. A green burst of light filled the window. I remember lying there on the floor and trying to make sense of it. Cop car lights aren’t green in Baltimore, are they?

In all the rushing to get to Richard, I had forgotten that day was the Fourth of July. And Americans shoot fireworks after dark on the Fourth of July. I eventually realized the sounds were firecrackers and bottle rockets and crawled up off the floor to watch out the window.

Those young men in the parking lot across from the liquor store that night were celebrating freedom the old-fashioned way–with some gunpowder and fire and laughter. An American tradition.

My tired brain, filled with fear and confusion, had heard gunfire and threats. That was what I expected to hear in that part of Baltimore.

So I ask you, when you watch the news, don’t just listen for what you expect to hear–look again.

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On My Honor, I Will Do My Best

tryI put a lot of effort into living–and living right. I live like somebody’s going to be handing out ribbons at the finish line.

This week, I was pretty convinced that if that did turn out to be the case, I would be handed a “Participant” ribbon.  You know, the one in the weird color that’s definitely not blue. The one that they order in large quantities to give to everyone who didn’t win, place or show.

I wasn’t excelling at anything, just participating. My kids were eating a lot of sandwiches. My running shoes couldn’t be located. Tasks at work kept piling up, no matter how hard I worked. I still hadn’t written a book proposal, much less a book. The wreck of a house was just getting wreckier. The Usual.

But one thing was really eating at me–Light the Night. It’s the big fundraising walk held by the Leukemia/Lymphoma Society. I raise money every year in Richard’s memory. It’s a way of fulfilling a promise to him, so I’ve tried to give it my all every year. For TEN YEARS.

The first year I walked, I set myself a goal of raising $1000. My friends and family donated $3000. So the next year, I set a goal of $3000 and raised $7000. The next year, a $7000 goal turned into $11,000 raised. The year after that?  We managed to donate $15,000 in Richard’s memory. People are so generous! So this has been a big deal for me for a long time.

When Richard knew that he was dying, and knew that he had been poisoned by toxins in his workplace, he made me promise that I would sue on his behalf after he was gone. He pointed his finger right at my heart and said, “If you win, you keep a third, give my sister a third, and give a third to the Leukemia/Lymphoma Society.” I promised. Scout’s honor.

I tried. No lawyer saw a way to pin it down. There’s no suing pockets that deep. So I let the wrongful death go. I started raising money through Light the Night. I had made a promise.

It takes a lot of work to raise those kinds of dollars. I’ve organized bake sales, silent auctions, coin drives. One year I sold sponsorships on my t-shirt like NASCAR. Twenty five dollars to get on the shirt. Fifty to get on the front. Two hundred and fifty to be in the boob area! One year I did a crunches for money–my sister donated enough to make me do 1000 crunches.

Even with all that work, the momentum slowed. The total came in at $13,000 when it had been $15,000 the year before. The next year, it went to $11,000. Still amazing, but…less than it had been. Last year, I couldn’t do a big auction at work that had been a money-maker for years. My total fundraising came in at about $7000.

Seven thousand dollars and I felt like I had let Richard down.  Crazy Alert.

This year, I was having trouble even getting started. July was so busy, I thought I would begin in August. Then the ALS Ice Bucket Challenge swept the world of charitable giving. So here it was, September 1st and I hadn’t raised a dime. The walk is on October 10th. Gulp.

I wasn’t even participating!

The negative voices started dogging me. “Don’t even bother. You can’t do much at this point.” The evil demon, Inertia, pulled me down.  “This could be the year that you stop.” I was beating myself up because my best didn’t seem good enough any more. And I had promised Richard that I would give something to LLS.

Well, well, well. It seems that ONCE AGAIN, I have failed to take my own advice. Just last week, when I spoke to the senior class at Wesleyan during Fall Convocation, I gave them some simple advice:  Do Your Best. Don’t worry about anyone else’s best–do your best.

We’ve all heard it a zillion times–do your best. But here’s the kicker that I shared with them.  Do your best, but remember that your best CHANGES. From day to day, year to year, maybe even hour to hour.

When I made that promise to raise money for LLS, my life was very different. It was just me and three weiner dogs who didn’t like to go on walks anyway. I had plenty of time to spend on tracking down sponsors, holding events, collecting donations, building a sense of community for the cause. I spoke on behalf of LLS. I taught newer teams how to raise money. I kept planning bigger and better events.

Now, 10 years into it, I’ve got 3 kids, a full-time job, Wesleyan alumnae stuff, a writing gig, and grown-lady bills to pay. I still love the excitement of making a difference, but I make a difference in a lot of ways these days (even if it’s by helping with spelling homework or crafting juicy and delicious blog posts). I’m not shirking my commitment to LLS, but I am giving myself some grace. My best changes from year to year. My best is spread out over so many beautifully creative adventures. boy_scout_with_oath

I’m doing my best in memory of my Eagle Scout. My goal this year it to raise $5000 in a joyful, easy-hearted manner.

And wouldn’t you know, as soon as I got the fundraising website up last night, the donations started coming in–$1430 in the first 24 hours!

So do your best, but remember that your best changes.

The Truth Is

Forget Me Not

Forget Me Not

The truth is…I didn’t even notice that it was June 30th until lunchtime today, when someone made an offhand comment about it being the last day of June.  The last day of June was the last day of my old life, the last day that had an hour in it when the man I loved wasn’t dying of leukemia.  June 30, 2004 was the last day I woke up next to Richard without having cancer lying between us.

His diagnosis was official at about 4:00 p.m. on June 30, 2004.  The truth is, I used to mark the hours each June 30 anniversary. In the morning, I would remember with chagrin the way I went off to work in my cancer pants (not knowing, of course, that they caused cancer).  At lunch, I regretted the timing of that day, that I wasn’t with Richard every minute.  I took a long break from my Microsoft Access class so that I could run home then deliver him to the eye doctor for an exam.  June 30, 2004 was the day we were so worried that he might lose his vision.  I was so busy working and trying to have a normal day that I couldn’t come back again to get him to the hematologist–he took a cab.  When an eye doctor looks at a CBC and tells you to go straight to a hematologist, it’s bad.  We were still calling Dr. Marrano the hematologist, not the oncologist.  The truth is I feel like a shit because he stood in our driveway and stepped into a cab and he already knew in his heart what the answer was going to be.  All the while I stood in front of a class of people, maintaining the illusion that I was in charge of something, anything.

The truth is that I used to mark those hours as they went by, but today I forgot.

There were times today when I thought back over the ten years that have passed since that day.  Tonight when I stepped out on the deck, I thought of that evening.  I stepped out on the deck that night to talk to Richard’s doctor friend Erik.  I read him the numbers from the CBC.  He sucked his breath at the hemoglobin and hematocrit.  He whispered “Shit” as I read the numbers.  He told me not to let Richard brush his teeth before his transfusion the next morning.  My eye fell on the corner of the maple table in the den and I remembered how we sat there at as he told his parents over the phone.  

The truth is, this is the same bed.  The same window.  The same frog chorus outside.  The wobbly ceiling fan.  The river brown paint on the walls that I thought he would like.  The same floor where his feet stepped.  The room where he died.  The room where I continue to live.  The room where my babies and I passed all those hours in the nights that have spun out since June 30, 2004.  

The truth is…I may have forgotten because it’s been 10 years.  Or maybe I had happier things to occupy my mind today.  I took my daughter to the river park to learn how to pedal her bike with confidence on the long flat stretches of sidewalk.  I took my son to the pool so that he could hold tight to my thumbs as he grows more comfortable with the feeling of floating.  At the hour when 10 years ago we were getting The News, I took a nap.

The truth is, today is a day in a different life.  I feel guilty sometimes that I’ve lived on.  I’ve become a mother.  I’ve found another love.  I’ve planted marigolds on the deck.  I’ve bought a new refrigerator.  I’ve got a different car, a different job, a different path around the grocery store.  I cheer for Brasil in the World Cup now because my kids have green passports in addition to their blue ones.  It’s a new world.  This world.  Not that one anymore.

The real truth is, June 30th was a shitty day that year.  A few of them since then were darkened by that habit of looking back, of retracing steps I never wanted to take in the first go round.  Maybe it’s been long enough that I can honor the love I shared with Richard by remembering the happy days, not the horrible ones.  I don’t have to go back through it every year to pay some penance for all the lovely June 30ths since then.

______________________________

Thank you, Alice Bradley, for this advice:  “When you are feeling stuck, start writing with ‘The truth is…'”  I needed to get this off my mind and into words.  

It’s Not “Cancer” Cancer!

July 1, 2004–a day when I said one of the dumbest things I’ve ever uttered in my life.

Richard lay half reclined on a hospital bed in the oncology ward, his khaki-clad legs crossed casually atop the neat white blanket and his shoes suspended carefully off the side.  Not one to make a mess.  The ambulatory center was full that morning, so they had to put him in a regular room for his transfusion.  It had been 12 hours since a hematologist/oncologist here in town had confirmed that Richard had leukemia.  And not the good kind.  In another 12 hours, he would be in Baltimore, admitted to Johns Hopkins, but he had to receive some platelets before any doctor would allow him to make the trip.

We were both in a blind panic, but pretending that everything was going to be fine.  Just. Fine. (smile)

His contract at the university had expired on June 30, the day he got the news.  He had a new contract sitting on his boss’ desk, ready to be signed.  What if she found out that he wasn’t going to be able to teach that semester and pulled the contract…along with his health insurance?  I, in panic mode, suggested he run over and sign it before anyone said a word.  Richard, being honorable, called her to explain the situation.  His boss, also honorable and kind, told him that he was cool–he had a job and insurance and her full support.

Here’s where the stupid utterance comes in.  While Richard was on the phone that day–with his parents, his friends, his boss–he broke the bad news over and over and over.  Even while putting a chipper spin on it, he kept saying, “I have cancer.”

After he hung up with his boss and we took a deep breath about his health insurance coverage, I said, “Stop saying ‘I have cancer.’  You don’t have cancer cancer…you have leukemia.”

He looked at me across the IV pump pushing blood and platelets into his body and replied, “And leukemia is….what?”

“Cancer.”bob ross

We laughed, but I’ll never forget the feelings that were piling up inside me as I sat there by the tidy white bed watching someone else’s blood drip into my sweetheart.  All while he called person after person and said, “I have cancer.”

All of those feelings added up to NO.  No no no no no.  NO.  I refuse to believe this.  No.  Nope nopety no.

I don’t want this to be true.

It’s called denial, and it exercises a powerful pull.  If I can just prevent this from being true for a couple more hours…NO.

I’ve been thinking about the “cancer cancer” conversation over the last few days.  When I wrote about my fears regarding Carlos’ speech problems, several of you who are educators (or with-it moms!) commented about the tendency for people to deny that their child might have a problem.  “He’ll grow out of it.”  “Boys will be boys.”  Teachers dread having to break the news that a kid needs extra help.  I hear you.  I blanched when I got a packet of forms on his first day at the new preschool and the header said “Special Education.”  That voice of denial in my head said, “What??  No.  He’s getting specialized education. Not…that other thing.”

bunnyLa la la la la…my kid is in Specialized Education.  It’s tooooootally different.

Well, regardless what we call it, Carlos will be getting every kind of education we can find for him.  In the words of his pediatrician, “We don’t hide from this.”  I hold on to that.

Being afraid of a word is OK, I guess, as long as I’m not afraid of the work.

 

No Spaghetti

spaghettiI don’t think I’ve ever made reference to this before, but my children may not be perfect in all ways.  And I sometimes worry that I’m not the Best Mother Ever.

I KNOW.  I’ll give you a second to regroup.  Put your head between your knees if you start to see sparkles.  

So I was blowing off to my friend Nicole yesterday about my worries regarding my kids and she said, “Hey, this is no spaghetti.”  

There’s nothing like having your own advice quoted back to you.  Here’s the story behind “no spaghetti.”  

Back in 2004 when Richard was sick, I spent 10 months traveling back and forth every other week between home and work in Athens and Baltimore where he was getting his treatments.  On a typical week, I would leave at lunch on Wednesday, take the dogs to Griffin, drive to the airport and fly to Baltimore that night.  Stay for a few days with him, marking hours in the hospital, running errands, waiting.  Then back home on the Sunday 7 p.m. flight.  Drive from the airport to Griffin where Daddy and Big Gay would have my puppies and a big Diet Coke waiting on me.  Then a two hour drive to Athens.  Hit the bed about 2 a.m. and get up for work Monday morning.  

One Monday morning was particularly hard.  That weekend, Richard had gotten bad news about his response to the latest treatment.  It was getting really hard to believe that he was ever going to get better.  He had been readmitted to the Oncology unit with pneumonia on Saturday.  After all that and the long journey home, I was used up by the time I got to work on Monday.  

At lunchtime, I dragged down to the cafeteria.  The line snaked all the way to the entrance because it was Spaghetti Day.  Our cafeteria makes some kickass spaghetti–tasty, cheap, and healthyish with turkey.  I got in line to wait my turn.  I was so tired I leaned up against the counter by the dessert case.  The line crept along.  

After a while, only one woman remained in front of me.  She automatically said, “Spaghetti for here.”  The steam tray that had been filled with spaghetti was scraped clean.  The woman behind the counter answered, “I’m sorry, we’re out of spaghetti.  Can I get you something else?”  

WHAM!  The disgruntled employee slammed her plastic tray down on the serving counter so hard that her silverware bounced into the air and scattered.  She snarled, “I’ve been waiting half my 30 minute lunch and y’all are out?  This is UNBELIEVABLE!!”  She turned to me like it was time to rise up in rebellion and asked, “Is this not unbelievable???”

The sudden noise and her ridiculously infantile behavior sent me over the edge.  I burst out in maniacal laughter.  “My fiance is 38 years old and DYING.  THAT is unbelievable.  THIS?  THIS IS NO SPAGHETTI!  NO SPAGHETTI!  GET OVER IT!”

She scooted over to the sandwich line without another peep.  

No spaghetti.  It’s good to have friends remind you of your own advice sometimes.  Pump the brakes, Ash, this is no spaghetti.  Thanks, Nicole!

 

An Unknown Soldier

Veterans’ Day and Memorial Day make me sad because my late husband, Richard, was not quite a veteran but his service to his country killed him.  

His first career was as an aerospace engineer.  He worked for the Army Research Lab at Aberdeen Proving Ground–a civilian who got a paycheck from the Army.  This career happened years before we met.  I asked him what exactly he did and he answered, “If something that flies blew up but wasn’t supposed to blow up–I investigated that.  If something that flies didn’t blow up when it was supposed to blow up–I investigated that too.”  

SCUD shot down by Patriot missile.  Richard's not in this picture.  But this is what he did for the Army.

SCUD shot down by Patriot missile. Richard’s not in this picture. But this is what he did for the Army.

He went to Kuwait during Operation Desert Storm to document the performance of the Patriot Missile System (was supposed to blow up–sometimes did, sometimes didn’t, often blew up the wrong target).  He even testified before Congress during the hearings about the Patriot.  

I have snapshots of him in the desert, in Army camo, Army-issued sidearm and everything, standing next to SCUD missiles (the ones that didn’t blow up).  He investigated the terrorist bombing of Khobar Towers in Saudi Arabia.  He worked on the Blackhawk Down helicopter crash from Somalia.  But he wasn’t a veteran.  

His investigative work wasn’t limited to Army aircraft.  In 2003 we were sitting in a hot tub in Bermuda at sunset and struck up a conversation with a lively couple.  They were part of a large group, there for a family reunion.  After a while, the wife revealed to us that they were there courtesy of Muammar Gaddafi, who had finally paid a financial settlement to the families of the people killed in the bombing of Pan Am 103 over Lockerbie, Scotland.  They were one of those families who had lost a daughter 15 years before that night in Bermuda.  Now that Gaddafi had paid millions in blood money, this couple were treating the people who had helped them survive their loss to a vacation.  Richard tensed up beside me.  After they left the hot tub, I asked him, “Did you work on that one?”  He nodded.  

On 9/11, he could barely speak through his rage–because he had worked on the investigation the first time terrorists had tried to blow up the World Trade Center in 1993.  Now that they had finally done it, he was no longer in the game.  He had moved on to being a business professor.  

One year on Veterans’ Day, we were watching the broadcast of the laying of a wreath at the Tomb of the Unknown Soldier.  I shed a few tears.  He sat stoically, holding my hand.  I asked, “Doesn’t it make you sad?”  He answered, “It is sad.  But it also makes me proud that I did my part.  I helped.”

cytoloy

Hemophagocytic histiocytes in bone marrow

Thirteen years passed since those days when Richard traveled the world wearing Army fatigues, getting an Army paycheck, on Army transport…but not a veteran.  When Richard developed a viciously aggressive form of leukemia at the age of 37, his doctors concluded that the cause was most certainly benzene exposure.  Why were they so sure?  Because the damage to his chromosomes was so severe that it couldn’t be a fluke.  Because 13 years is the incubation period for that kind of leukemia.  Thirteen years earlier, he had been blowing up or reassembling all kinds of aircraft.  And aircraft fuel is high in benzene.  The office that Richard worked in, investigating all those explosions was situated in a converted aircraft hangar.  When the Army Research Lab converted the space to a laboratory, they didn’t bother to dig up the old fuel tanks or test the soil to see if it was contaminated.  

If he had had any other job, he wouldn’t have died.  If he had even had a different office, he wouldn’t have died.   

All that work he did keeping our soldiers safe killed him.  That’s why I feel conflicted on Veterans’ Day.  I wish he had heard “thank you” for the work he did.  Or “we’re sorry” from the Army.  I am proud to know there are soldiers who have made it home because of something he figured out in that lab.  He gave his life in that lab.  

Good Night Moon

Goodnight Moon

In the great green room…

Tonight, Carlos chose “Goodnight Moon” for his bedtime book.  We haven’t read it in a few months–I never got the sense he really liked it, but what do I know?  He likes to say “mush” and “bears” and “chairs” and “yight.”  Our copy of this board book was Vivi’s favorite for a while, too, so it is soft around the edges and broke backed.  We find the mouse on every page and we whisper good nights to the kittens, the mittens, the comb, the brush, the old lady whispering hush.  When we got to “good night stars, good night air, goodnight noises everywhere,” I choked up on something that’s been making me sad all week.  

Absence.  Emptiness.  Distance.  The space between the stars.  The empty places in the trees as the leaves begin to fall.  

Goodnight Moon has been around for seventy years.  Phones and clocks don’t look like that any longer.  Who eats mush?  When I was younger, I remember seeing that book and thinking how godawful the colors were.   And the plot!  Bleh.  Now I find such peace in that tidy room.  Margaret Wise Brown takes the fear and loneliness of darkness and going to sleep and turns them into cozy comforts.  That room’s never lonely even when it’s quiet.  

I’ve been lonely this week with G out of town.  I’ve been really proud of myself for taking care of the family single-handedly and hitting all my marks.  But I had a few conversations about grief/loss/change/sorrow this week that got old feelings bubbling up, and once the kids are in bed I have all this time and quiet on my hands.  I walked downstairs the other day to retrieve something for Vivi and passed a picture of Richard’s and my feet propped on a balcony in New Orleans.  I sobbed before I knew what was happening because that big toe doesn’t exist anywhere in the universe any longer.  Our waitress at Steak and Shake wanted to talk about leukemia when she saw Vivi’s tshirt.  I met my fundraising goal in his memory and his mother wrote me to say that it warms her heart when I do that every year.  His classmate sent in a donation.  So did people who never met him and only know him through my stories.  

When I carried Carlos to bed, he held Goodnight Moon in both hands, clutched to his chest.  After I tucked him in under his monkey quilt that my high school friend, Valaria, made for him, he seemed to be drifting off.  I took the book and put it on the table.  In the dark of his great yellow room, he wailed, “MY BOOOOOOOOOOK!”  I brought it back to him and he laid it across his chest.  

As I was washing dishes and crying for people I know who are hurting and for things that have gone away, I remembered a snippet of a song I heard 10 years ago on an Oxford American Magazine Southern Music CD:  “Goodnight moon, goodnight stars, goodnight old broke down cars.  Going away, leaving soon, goodnight darlin’, goodnight moon.”  And lo, through the magic of Google and YouTube, I got to hear the song again tonight while the dishes dripped dry.  

It’s by Will Kimbrough.  Here’s a clip of Will singing it live at the Bluebird in Nashville:

I also liked this version.  It’s tuned higher and the arrangement is spare and elegant.  It’s Jason Vincent doing a cover of Will Kimbrough’s song “Goodnight Moon”:

After listening a few times and a few times more, I felt better.  I remembered that the same moon shines on all of us, wherever we are, whenever we are.  The moon that my grandparents kissed under is the moon that lit our path when Richard and I walked along a beach in Crete.  It’s the moon G sees in Brasil, and Erica in Chile, Rhonda in Canada, Frances in Ecuador, Beth in France, Catie in Bhutan, Marian in the Netherlands, Heather up the street, Jean a mile from her, Rachel down in South Georgia, and Ginger in Ohio.  Goodnight y’all.  Goodnight all.