Tag Archives: cancer

“We’ll Die Walking”: Lessons From Reading In a Hospital

Remember when you could sit down and read a book for a couple of hours? Yeah, me too. That was before kids. I read whenever, wherever, and however I can these days.

Percy Fawcett, explorer

Percy Fawcett, explorer

Yesterday morning, I had a strange experience while reading on my walk into work. I’m halfway through “The Lost City of Z,” which my friend Jill loaned to me last January and I’m finally getting around to. I can’t give you any spoilers because I haven’t finished it yet, but it’s really good (thanks, Jilly!). It’s the story of Percy Fawcett, a British explorer in the Amazon who set off in 1925 to search for a city of gold and ended up vanishing into the jungle without a trace. Or maybe there are traces later, but like I said, not finished yet.

I was engrossed in the story of one of Fawcett’s early expeditions, a trek to find the source of the Verde River between Bolivia and Brasil. The expedition hit snags and Fawcett and his men–after a few bad decisions about how much canned food to carry–ended up starving in the jungle next to a poisoned river with nary a fish. Fawcett refused to turn back, even though most of his men were falling ill from the fevers brought by the relentless mosquitos and vampire bats.

There I was, hurrying to the end of the chapter in hopes that I could find out how the party made it out alive before I had to clock in. My face buried in the book, I trekked up the sidewalk, right at the crepe myrtles, left at the rosemary, then I ducked into the building through the side door under the Rehab pool. A wall of icy air-conditioning hit me but I never looked up from the page. Just like Fawcett in the “green hell,” I was confident that I could find my way.

PET scan of the brain

PET scan of the brain

No one is ever in that hallway. The only thing back there is a storage closet and the back entrance to the P.E.T. scan area. What’s a PET scan, you might ask? That’s a kind of radiology test where some highly skilled people put a radioactive tracer in you then take a picture or Positron Emission Tomograph to map out disease activity in your body. It’s the test that shows you if cancer has spread. When cancer survivors say they have to go in for a scan, it’s probably a PET scan to monitor the progress or remission of their disease. A PET scan explores the previously invisible life of our organs. In a way, it’s like Fawcett heading off into the jungle hoping to find treasures and fearing what may be revealed.

Like I said, that hallway is safe for reading because no one is ever back there. But that morning, I had to pull up short before tripping right over a group of three people. They walked out of the PET scan doors in a cluster–the radiology tech in his sage green scrubs, a young woman carrying two purses and a sheaf of papers, and one women of about sixty, who looked to be carrying the world on her shoulders. They didn’t pay me any attention, there behind my book.

“We’ll get these read this afternoon, and your doctor will call you with the results,” he said, looking the older woman right in the eye and nodding gently. Neither woman spoke but they both nodded in return. He smacked the button on the wall that opens the doors to the Radiation Oncology department. They hesitated a second while the doors swung open then he led them through in silence. I waited in the hall for the doors to close behind them.

Walking through that spot, the spot where that woman had stood a second before, I felt like I was walking through a cloud of her fear. It was tangible, buzzing, a gray heaviness like a swarm of jungle mosquitos carrying yellow fever. That fear that a cancer patient feels, coming to the hospital for the scan that will bring good news or the worst news. The scan that reveals the next part of her life and how it will go. That ordinary woman seemed like Fawcett chopping his way into the jungle, one foot at a time, never knowing if the next moment would bring a viper or a city of gold.

I thought about that woman and her daughter, how their afternoon would stretch out before them until the jangle of the phone would send their hearts to the ground. I hoped the news would be good. Please, please, please let that scan be clear. Let her laugh with relief and let the tears that they cry today be tears of joy. I took a couple of breaths, thought about all the times Richard and I had waited for one test or another. Thumbs up, thumbs down–will our life go on?

I pressed the button for the elevator. As I waited, I was struck by this passage in the tale of the Verde River party:

The starving expedition. Fawcett far right.

The starving expedition had a camera but no food. Fawcett front right.

“Fawcett soon noticed that one of the men had vanished. He eventually came upon him sitting collapsed against a tree. Fawcett ordered the man to get up, but he begged Fawcett to let him die there. He refused to move, and Fawcett took out his knife. The blade gleamed before the man’s eyes; Fawcett ached with hunger. Waving the knife, Fawcett forced him to his feet. If we die, Fawcett said, we’ll die walking.”

– David Grann, The Lost City of Z

I thought of that woman and how her shoulders stooped. I had assumed she was carrying her fear of dying. But really, she wasn’t like the starving man who wanted to surrender to death. She wasn’t rolling over and giving up–she was still walking, still consulting with her doctors, still LIVING. Regardless of the results of her scan.

I don’t remember if Richard ever had a PET scan. With blood cancers, your cancer is everywhere from the get go, metastatic from square one.

I do know that he never gave up. The man looked at me not twelve hours before he died and mumbled through cracked and bloody lips: “I’m just going through a rough patch.” He insisted on living, right up until the moment he died. He never quit walking, and I followed him right through that jungle, right up to the gate of the golden city.

“If we die, we’ll die walking.”


Want to read it for yourself? Here’s a link!

A Tidy Kitchen Will Break Your Heart

beverage-21905_1280

A tidy kitchen.

“Just.  Wash. The. Godforsaken. POTS.”

That’s what I was growling under my breath tonight as I clung to the edge of the kitchen sink and tried not to pass out from the bleach fumes.  See, G is a chemist by training and he thinks that there’s NOTHING that bleach can’t fix.  Especially pots and pans.  He–being both a chemist and a MAN–refuses to just pick up the f’ing scrub brush and scrub the pot.  Instead, he leaves this morning’s waffle batter bowl sitting in the sink with equal parts bleach and water until the concoction eats through the stuck on stuff.  And my last nerve.

This makes me NUTS.  Just wash the pots and be done with it!!!!  His bleach fetish is also why most of my tshirts have a little line of bleached out dots right across the belly, where I’ve leaned up against the sink too soon after he’s “done the dishes.”

Is it just me or is your blood pressure up too?  GAH!!!!

So I finished up all the dishes once my eyes could focus from the fumes.  Done and done–ten minutes and NO DAMAGE to anyone’s respiratory system.  But the fumes did remind me of a story and a lesson I learned about 10 years ago this summer.

A few weeks after Richard and I bought this house and moved in together, my sister called me.  “So how’s it going?” she asked.

“It’s great…except there are a couple of things that are hard to adjust to after a few years on my own.”

She thought I was talking about manstink, but I assured her we had separate bathrooms.

“No, it’s the fact that he NEVER shuts the kitchen cabinets!  Or drawers!  He’ll walk into a perfectly clean kitchen to make a cup of coffee and leave the cabinet door hanging open, the spoon drawer sticking out, a sticky spoon NEXT TO the sink, and the creamer on the counter!”

My sister hooted.  Turns out her husband does the same thing and it makes her crazy too.

For months, Richard walked through the kitchen doing his thing and I walked right behind him tidying up.  (Which, if you’ve been in my house since I had kids….is no longer my practice.)

Then he got sick.  And he went to Baltimore for treatments.  I went up there on his heels for the first week but I had to come home eventually.

One morning, I walked into the kitchen to get something for breakfast and there wasn’t a thing out of place.  Except him.  The cabinets were fine, but he wasn’t.  I sank to the floor, right there in front of that clean sink, and sobbed until the dogs got worried and started to lick me.

A tidy kitchen will break your heart.

Sharing a life with someone takes compromise.  Sharing a home with other people is hard.  It’s messy.

Wonderfully, wonderfully messy.

And that’s not just the bleach fumes talking.

 

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.  

With This Ring

Image courtesy of Metropolitan Museum of Art

Image courtesy of Metropolitan Museum of Art

 

I hit one of those grief loops today–the portals through time that sweep me back into another moment from another life.

As I was washing my hands in the kitchen at work, a memory came back to me from the day Richard and I moved into our house back in the fall of 2003.  We were unloading a truck filled with my stuff (mostly boxes of books).  Our paths crossed in the garage as he was walking into the house and I was walking out.  I saw his left hand gripping the corner of a gigantic cardboard box and for a fleeting second, I imagined that I saw a shiny gold ring there.  A simple wedding band.  The image seemed so real, in that instant, that I stood there kind of dumbstruck.  He paused as he walked past me and gave me a funny look.

“What?” he asked.  I laughed and shook my head to clear it.  “Nothing.  Just daydreaming.”  He leaned over and kissed me on the cheek.  Then he said, “I love you…and you didn’t have to say it first this time.” And he went on his way.

I was usually the “I love you” and he was the “I love you, too.”  That moment–sweaty and stinky and tired in the garage– made me so completely happy.  We were starting our life together, blending our stuff.

I guess that moment was prescient–seventeen months later he did wear a simple gold ring on that finger.  We picked out our wedding rings while sitting on the side of the bathtub in our house, the night before the ceremony.  Big Gay had brought a black velvet tray of them from our jeweler friend, Tony.  Richard wasn’t much for jewelry.  He didn’t even think he would wear a ring.  But it was important to me to give him a token, so he chose a simple gold band.  There was no time for engraving.

The next morning, under a white tent in our backyard, I put that ring on his finger.  The minister bound our hands in his silk stole for the blessing then whispered to us, “You’ve tied the knot!”

Richard agreed to wear the ring for the rest of the day because I enjoyed the sight of it so much.  He kept it on into the night.  In between IV meds, he joined the rest of us out on the deck where we sat telling stories in the dark.  He kept it on when we went to sleep, past midnight when his drugs were finished running their course.

The ring was still there the next day, on his finger.  It stayed there for the eleven days that we got to call each other husband and wife.  He never took it off.  After he died, I took it off his finger and put it on mine.

That’s the memory that came back to me today–the imaginary vision of a gold band when he was so strong and happy, and the memory of the gold band when he was dying…and happy.  It’s hard to believe that we found a way to be any kind of happy in the middle of the end of his life.  We did.

So I dried my hands on a paper towel and went back to work.  If you passed me in the hall and wondered why I had that strange look on my face, this is why.

 

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.

 

“I Want to Help People With Leukemia.”

On Friday night, Vivi walked into the den in her pink penguin pajamas.  Her fist was wrapped around a stack of four quarters.  She leaned against my knee and held out the money.  I opened my hand and she poured the coins in.

“What’s this, baby?”

“This is for my slice of cake.  I want to help people with leukemia.”

In that moment, I couldn’t hold her close enough to show her how much I love her.  I buried my face in that curly head of hair that smells like chlorine and hugged her as tight as I could.  I breathed in my daughter, the first person in my life whom I’ve loved with every cell of my being.

In that moment, I felt joy that she has a generous and loving heart.  I felt proud that she wants to contribute.  I felt sad that she knows so much about leukemia because I am her mother.

I had organized a big cake auction and bake sale at work that day for the Leukemia/Lymphoma Society.  This is the eighth year of the “Thrilla In Vanilla” and we raised $2435 in four hours.  So for days, Vivi has been hearing about the Thrilla.  She knows that I work with LLS because of Richard.  Vivi knows that Richard’s blood stopped working and it couldn’t be fixed.

Slice-of-Pound-Cake-on-Red-Plate-iStock

Thursday night, my neighbor and friend brought over a vanilla cream cheese pound cake to donate to the auction.  It was still warm from the oven.  The divine smell permeated the house.  Of course, Vivi wanted a slice right away.  I told her it wasn’t for us–it was to raise money for the Leukemia Society.  She nagged, wheedled and puzzled about that cake for an hour.  Friday morning, when I woke her up, she opened her eyes and said, “If I give you some money, can we eat that cake?”  She was SERIOUS.  And she’s sitting on a nice wad of cash from the Tooth Fairy, so I took her seriously.

I kept my eye on the pound cake during the auction and had to outbid a couple of folks, but I won “Vivi’s Cake.”  When I picked her up from school, she asked if I had gotten the cake.  I was happy to be able to say, “YES!!!”  As we drove, I gave the kids some molasses cookies for a snack (sugar rush Friday at our house!).  Vivi asked me who had made them.  I said, “My friend, Denise.  Her husband got a blood cancer but he’s better.”

“How did they fix it?”

“They gave him medicine and his blood went back to being healthy.  The money Mommy raises helps pay for the scientists who discover the medicine.”

“Did your friend’s husband have leukemia or lymph-i-oma?”  I didn’t correct her pronunciation.

“He had myeloma–it’s the other kind of blood cancer.”

Vivi thought for a second and asked, “Is he…the same color as us or a different color?  Is he black?”

“He’s the same color as us.  White people get myeloma, too, it’s just more common in African Americans.”

That’s when when my heart sank because I realized that this six-year-old can name two blood cancers and remembered that myeloma was more prevalent among African Americans….jeez.  She knows way too much about this stuff.  I felt bad that the only reason this information has entered her consciousness is because I brought it into her life.  That’s some advanced Mom Guilt right there.

A few hours later, when we sliced into the pound cake after dinner, Vivi called the end piece with all that golden crust.  Carlos learned to say “poun’ kek!”  It was delicious–sweet and dense and rich.

But even sweeter was that moment when my first-grader, who may know too much about blood cancer for her age, paid one of her dollars for that slice of cake–to help people with leukemia.

The sad scary parts of life will come to her as they will.  I can’t stop that, no matter how hard I try.  But it’s my privilege to teach her that we can keep hoping, and giving, and believing.

My Mourning Jacket

My Mourning Jacket

My Mourning Jacket

While I was digging around in my closet to find the Cancer Pants, this silk jacket tapped me on the shoulder and asked if I might be so kind as to share its story, too.  It’s a story that goes all the way back to Berlin in World War II.  Then it rushes forward to one of the saddest moments of my life.

I’m not much for Church with a capital C, but I do enjoy old churches, especially quiet ones.  In the center of bustling Berlin, smack in the middle of its busiest shopping street–Kurfürstendamm–stands the ruin of a church.  It’s the Kaiser Wilhelm Memorial Church, built in 1892 and destroyed by Allied bombs in 1943.  The shattered tower of the original church still stands as a memorial to the war and its losses.  Next to the old tower, a new modernistic column rises from the traffic.  From the outside, I found this new tower repugnant–like a silo.  Berliners aren’t all fond of the design–it’s often called “The Lipstick and the Powder Box.”

Berlin-Kaiser-Wilhelm-Gedaechtniskirche-1-a19772025

But inside…oh inside there is peace and joy and beauty, all built pane by pane from the pain left to Germany after the war.  The walls are made of honeycomb concrete to keep out the noise from the street.  Suspended inside the honeycomb are over 21,000 panes of glass, mostly blue, but shot through with red, green and gold.  Like those beads that I talked about after the Boston Marathon bombings.

Richard and I visited there on a sunny spring afternoon.  Stepping inside was like walking inside a kaleidoscope.  I sat on one of the simple pews and let the peace enter my heart.  In that same week, we had been to Prague, where my heart was broken in the Jewish Quarter, then on to Dresden, where I faced the reality of what American firebombs had done to that beautiful city, then on to Berlin with Checkpoint Charlie, the Brandenburg Gate, and the Reich-stag.  The lime blossoms along Unter den Linden.  The pilfered archaeological treasures at the Pergamon Museum.  Everything that week was related to war and my heart had grown heavy with trying to take it all in.  This broken church gave me sanctuary.

Glass designed by Gabriel Loire

Glass designed by Gabriel Loire

It might be my imagination, but I think I recall that some of the glass from the bombed Kaiser Wilhelm Church was collected from the ruins and incorporated in the new windows.  Even it it’s not true, it should be.  

A few months after that trip to Germany, I found the “stained glass” silk jacket.  It reminded me of the blue windows in Berlin.  

Richard died on March 16, 2005, at about 6:30 in the evening.   I slept on the couch that night because I couldn’t sleep in our bed.  My cousin, Annette, came across the street, gathered up the sheets and washed them for me that night.  She knew what to do.  

After his parents woke early, I retreated to our room and closed the door.  I crawled up in the rented hospital bed, curled into a tight ball, and cried myself back to sleep.  There over the place where his heart had stopped beating.  I slept so soundly and woke rested after only two hours.  His father knocked on the door to tell me it was time to go to the funeral home and see to arrangements.  I asked if he could go without me but I had to be there–because we had married, I was his next of kin.  His own father couldn’t sign the papers.  I had to.  

I put on my stained glass jacket.  Ever since then, I think of that day, those papers, when I see that beautiful jacket.  How my hand shook and hesitated over the cremation request. The moment when I had to commit the body I had loved so well to oblivion.  How his father steadied me with the idea that this fire, this final fire, would be the thing to clear his body of the cancer he had fought so bravely.  Like a child, I wiped my tears on the sleeve of that silk jacket, and they blended with the blue, the red, the green, the gold.