Tag Archives: cancer

CAUTION: These Pants Cause Cancer

23 Replies

Cancer pantsThese are the pants that I was wearing on June 30, 2004.  That was such a busy day, a Tuesday, I think.  Maybe a Wednesday.  Richard and I had returned home from our vacation in New England, first at Linekin Bay for sailing then on Cape Cod for his cousin’s wedding.

We had so much to do after two weeks away from home–laundry, cleaning, paying bills.  I went right back to work.  I was teaching a Microsoft Access class that day.  Richard spent the day trying to get seen by a doctor to see if anyone could figure out why his vision was going blurry.

The day before we left for vacation, he cut the backyard with a push mower.  When he came inside, I noticed that he had a big red spot in the corner of his eye.  I asked a nurse friend and she said it was probably a simple burst blood vessel.  A common instance when one overexerts oneself.  It would clear up in a few days.  But it didn’t.  Over the two weeks we were away, the eye stayed red.  By the end of our trip, his vision was so blurry that he had to pull over to the side of the highway and let me drive through Boston.

Richard got in quickly with Dr. Blue, the ophthalmologist.  Dr. Blue looked inside Richard’s eyes and found what he thought was a dangerous bleed.  We spent a few hours in a panic–what if Richard lost his sight?  How could our life work if he went blind?   There was talk of going to Atlanta the next day to see a retinal specialist.  Fortunately (I guess), Richard also mentioned to Dr. Blue that he hadn’t been feeling well for a while and Dr. Blue had the foresight to order a CBC.  While I taught Access, Richard had the blood test done.  By that afternoon, Dr. Blue had called to say that we must get Richard to a hematologist that day.  A normal white cell count is between 4,500-10,000.  Richard’s was over 70,000.

We didn’t know the specifics yet, only that the doctor would be waiting on us at Northeast Georgia Cancer Care.  There was that word.  The unimaginable prospect of Richard losing his vision melted away and was replaced by that word.  We sat in the waiting room there, among those people with cancer.  I couldn’t find a single thing to read on the coffee table that wasn’t about…that.

So.  Dr. Marrano brought us back.  Richard took my hand and told me to wait in another room, that he wanted to talk to the doctor alone.  Dr. Marrano was so gentle with us that my heart went hollow.  You don’t have to be that nice and careful with someone who has anemia or an infection.

I sat in an exam room by myself.  I was so afraid that I couldn’t raise my head up and look around.  All I could see was those ridiculous pants.  Orange jungle print.  Ludicrous pants that hadn’t a care in the world.  I sat there thinking, “He’s over there on the other side of this wall and the doctor is telling him that he has cancer and I am over here trapped in this room with these incredibly obnoxious pants!”  If only, if only, if only.  If only one thing could be different.  Staring at those pants as the knowledge sank in that our normal life was over.

Dr. Marrano tapped on the door and brought Richard back to me.  The door closed behind him–I didn’t get to talk to the doctor.  Richard held my hand again and told me how it was going to be.  Looked me right in the eye and said, “I have leukemia.”  How there were lots of treatments and he had youth on his side and he was heading to Johns Hopkins for the absolute best experts in the field.  

Maybe those pants held me up.  I remember wanting to fall down in a heap.

We drove home, like people do.  I started crying at the traffic light at Prince and Satula.  He patted my hand on the gearshift.   The light changed and we moved on.

That night, we tried to find a doctor to talk to, any doctor.  My sister wasn’t answering, so we called Richard’s college buddy, Eeric.  A giant Viking of an orthopedic surgeon, but he knew how to interpret a CBC.  Richard was on one phone breaking the news to his parents.  I walked out on the deck to read the numbers to Eeric.  When I read the hemoglobin score, he sucked in his breath and whispered, “Shit.”   Normal range is about 14-17.  Richard’s was 7.  Eeric made me promise that I wouldn’t let Richard so much as brush his teeth until he had had a transfusion, which was scheduled for the next morning.

At the end of that long day, I took off my jungle print pants.  Nine years later, and they’re still hanging in the closet, with a fine haze of dust over the hanger.  I never could bring myself to wear them again–those are the cancer pants.  Couldn’t give them away either–they are part of a day in my life that will always be vivid.  Livid.  Obnoxious.  That innocent woman who walked out into the world in her ridiculous pants.  She never came back.

What’s that crazy thing in the back of your closet that you can’t throw away?

In Another Life, 46.

20 Replies

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

28 Replies
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?”

4 Replies

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

24 Replies

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

12 Replies

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

Looking for the White Knight

37 Replies

So, my therapist has been talking about me to other clients.  I’m totally cool with that–it’s in a good way.  It’s like what Ellen Gilchrist said about her family’s reaction when she writes about them:  “They don’t care what I write as long as I say they’re good looking.”   The story that my therapist shares with others is the one I wrote about yesterday, when I met my second husband by the side of the highway when he stopped to rescue me.  She tells it to people who are rebuilding their lives and wondering if they’ll ever find someone to love.  The advice she gives them and that she gave me when I was rebuilding after a divorce was this–focus energy on YOUR life, not who you’ll share it with.  Plan the life you want, down to every detail and when you have it in place, you’ll be able to see the person who fits into it.  Don’t worry about looking for them first.

white knight

I had spent 10 years trying to make myself into a person who could make a life with the person I had picked out when I was 22 years old.  The problem was, Fartbuster didn’t much like the world because he was smarter than everyone else in it and didn’t see the point in bothering.  I had to get smaller and smaller and smaller to keep him comfortable.  For example, I told him I wanted to get back into writing and he said to go for it.  But when I came home at 8pm after my writing group, he was all pissy “because there was nothing for dinner.”  Ummm, you’re a grown man with a debit card, a car and an Arby’s.  Feed yourself.  I wanted to travel.  The only place he would go was England because we spoke the language.  He ended up SCREAMING at the snack bar lady at Stonehenge because there was no ice in his drink. I told him I wanted to have kids and he said that he really didn’t see how they could be worth the effort–we would have to run the dishwasher more often.  His number one concern about having kids was that I might gain weight. Yeeaaaaaah, I’m not making this up.

Still.  When it was over, I felt like I was starting from square one and I’d never catch up and get to have the life I wanted.  The Baby Store was going to be all out of babies by the time I got my act together!  The Happy Store would be closed for renovations!   I needed to FIND SOMEBODY and do it quick.  My therapist told me to pump the brakes.

My first assignment was to visualize the life I wanted.  Not in generalities like “I want to find love, ” but specifics:  do I want to come home and cook dinner or go out to eat?  Do I want to listen to music and talk or eat in front of the TV while watching CSPAN?  Do I want to go to bed early or late?  Do I want to exercise?  How?  Do I want to spend weekends with family or camping in the woods?  What color should the bathroom towels be?  Where do I want to go on vacation?  What do I want to do for holidays?  Every sentence had I as the subject…not we.

I started living my own life.  I cooked lasagna for one.  I put on a swimsuit for the first time in 10 years.  I went to the beach with my family.  I tried tequila shots for my 32nd birthday.  I went to movies on Sunday afternoon, all by myself.  I threw parties and went to parties.  I bought season tickets to Chastain concerts.  I volunteered with my college and a literacy project.  I joined a writing group.  I attended the Unitarian church.  I read all day or walked all day or shopped or slept or stared out the window.  I planted daffodil bulbs.  I walked my dachshunds.  I did a lot of work on myself.  I went on some dates and turned some others down.  I woke up one morning whistling.  I realized that I was happier on my own than I would have been if I were still married.  That was a really good day.

And what do you know?  A few days after that, my car broke down and I met Richard.  Our lives bumped up against each other’s and it worked.  Love plopped right into my lap when I had quit chasing it.  I think Nathaniel Hawthorne compared happiness to a butterfly.  If you chase after it, it will always elude you; but if you sit peacefully, it will sometimes alight upon you.

For years, I thought of Richard as the White Knight who swooped in and rescued me.  He was my reward for the miserable decade I had tolerated.  When he died, I was PISSED.  Not at him, but at the great scale of justice that had taken away my reward, my rescuer.

But here’s the thing my wise counselor pointed out.  There were two people who met on that cold and blustery day by the side of the highway.  Two stories.  One of those people was going to get sick and one of them was going to die.  One of them was in need at that immediate moment, but one of them would have a much greater need four years down the road.   Richard, brave and capable as he was, would need someone courageous and stalwart and true beside him for that great fight…and it turned out to be me.  I was his White Knight.  We rescued each other.

If you are feeling like there’s no white knight coming to the rescue, look more closely…it might be you.