Cancer Check-Ups & A Kitchen Remodel

doc It always starts like this: the stick of a needle, the smell of latex gloves, the sticky red blood that drains from my arm into the plastic tubes.  They will send it off and analyze it and my results will be uploaded and stored in my file.  And then my oncologist will read the report and determine whether or not cancer has crept back in.

Every six months this happens.  Each time I feel like a sailboat without wind.  I’m in the ocean, waves in my face, no site of land.

It is a little embarrassing to admit how hard these check-ups are for me.  In some ways I feel like I have come so far these past two year since diagnosis.  I feel stronger, braver, more connected to the present . . . and my hair is growing back (I even used a hair dryer the other day).  But in other ways I feel more fragile then ever.  More aware of how we are all just dangling on by a thread.  Just one phone call away from our world turning upside down.

In the weeks leading up to my appointments all my positive thoughts and energy somehow take a backseat to fear.  I try to wrestle it, but the “what ifs” still feel all to real.  And now I KNOW what it feels like to have cancer.  I know the true torture of having chemo in my veins.  I can still feel the tears on my face, as I hear my kids asking “why can’t mommy come, too?”

It wasn’t that long ago.

And it flashes back in my mind like this.  Like an instant replay of all that can go wrong.  And sometimes I can’t even breath.  What if my cancer is back? What if my cancer is back? What if my cancer is back? An impossible endless refrain that steals my sparkle.

Anxiety is the worst.

Fear is the worst.

What a crazy waste of time — worrying about something that may never happen.  I know it.  It makes perfect sense.  Worrying is foolish.  It only robs us of the present joy that is ours for the taking.  I know it.  I understand it.  I say it often to others.

But as I sit in the waiting room with Joel holding my hand and I see all the suffering that is so neatly arranged in rows, I can’t help but worry.  My knee starts to bounce and I wonder why the doctor is taking so long to see me.  Are they reviewing my results?  Is it so bad that they have to collect themselves before calling me in?

It sounds crazy.  I don’t even like typing it.  But it’s true. And it is real.

Let me clarify that it is not all of the time.  I am 90% free of these kind of stifling thoughts.  But when this anxiety strikes, I feel small.

My oncologist and the Siteman nurse practitioner think it could be a bit of PTSD.  They recommended I see a counselor to give me strategies on dealing with the stress that comes with my six-month cancer check-ups.   And I plan to call to make an appointment.  The kicker is- I have to go back THERE for the help.  To the place whose smell literally turns my stomach.

“Your blood work is perfect. You can breathe.”  The nurse practitioner says as she holds my hand, as she gives me the counselor’s flyer.

I breathe.  I let it settle into my bones.  I’m okay.  I’m okay.  I’m okay.  And I squeeze my eyes shut and say a silent prayer for the women in the next room, or down the hall, or sitting two hospitals away — the woman who is getting the news we all dread, “it looks like your cancer is back.”   I say a prayer for her, and for all of the women, men, and children who are waiting, or wilting, or worrying because of cancer.

But for now, I’m okay.  And I’m happy.

And I know it is a COMPLETE stretch, but I just can’t help but make a comparison between cancer and our kitchen remodel.  Sometimes you start out like this:

before-kitchen

And life throws some crazy shit your way.  And then you feel like this:during-kitchen

But because you were willing to to be knocked all the way down (like all the way down to the studs), you end up feeling like this:

And you realize that even when things are completely dismantled (and you are forced to eat cereal out of paper bowls for weeks on end and drink coffee from dirty/dusty mugs, and have your refrigerator in your dining room for months), even when things seem like they will never be normal again — the sun comes up, winter fades to spring, and you find yourself staring at your husband preparing a turkey for Thanksgiving.  And you feel so grateful.  So blessed. So okay.

For my sad friends, the day after.

123_1Like many of you, I didn’t sleep last night.

And like many of you, I felt like staying in bed this morning.  Too tired to face the reality of a Trump presidency.  I could list all the reasons I voted for Hilary, or I could angrily spit out the reasons I did not vote for Trump.  But what good would that do?

I would be lying if I told you that I didn’t feel a sense of despair.  I was surprised at how angry I felt.  How scared.  How powerless.  And then those feelings were followed by an awareness that my race and economic class so often protect me from feeling this way.

And then I got a text from my friend Pam.  Pam is lovely.  She is good and kind, and patient and forgiving.  She has a quiet way of making the world better.  She is one of those people that is always working behind the scenes.  Pam is hope.

Pam says: “I’m remembering the Martin Luther King quote: ‘the arc of the moral universe is long, but it bends towards justice.’ I have to believe that love does trump hate in the long run.  I think we’re living through a period of backlash.  Progress is never linear.  Politics, in particular, goes through cycles…”

Progress is never linear.

Pam is brilliant, and right.

Pam’s text made me breathe again.  And the very act of breathing made me feel hopeful.

Do we have work to do? Yes.  Are all the people who voted for Trump hateful, racists? No. I know some really good people who voted for Trump.  People who feed the homeless, and do important work in their communities. Do we have work to do? Yes? Is it hopeless? No.

My students read an article today about the election results.  I gave them time to respond to the news in writing, and then asked them to write words that made them feel hopeful on my board.  They each came up and contributed.  I’m not sure if they felt better, but I sure did.  Words have a way of working into our souls, they smooth our edges like ocean waves on sharp glass.

My favorite blogger, Glennon Doyle Melton, posted this quote today:

“They tried to bury us.  They didn’t know we were seeds.” — Mexican Proverb

If you feel buried, be the seed.  Be the love.  Be the change.  Be the light.

And breathe.  Think of all the wonderful people you know.  All the acts of kindness and grace that helped you get to where you are. Find ways to reach out to those who feel like their voice isn’t heard, and listen to the ones that do.  If you feel buried, be the seed.  Let those words settle into your soul.  Let love smooth away the sharp edges like ocean waves on sharp glass.  It takes time.  But we are in this for the long game.

 

 

 

 

The “Before”

oct-11th-2014

This photo popped up in my Facebook memories.  It was taken two Octobers ago.  Just one month before I was diagnosed with breast cancer.  When it popped up I couldn’t help but stare at it.  Was that me? The girl with the long hair and a carefree smile?

My mother-in-law and sister-in-law went with me to one of those paint nights at a cute little art studio.  The ones where an instructor leads the whole class through a lesson and everyone ends up creating the same version of a painting.  The ones where (mostly) women gather with their friends, family, or co-workers, drink wine and do their best to imitate the artist’s brush strokes.

I remember looking around the room and seeing everyone working so carefully to follow the directions, to move their brushes in just the right way.  I saw how my mother-in-law and sister-in-law’s paintings were evolving so nicely,  they had patience, and precision, and some natural talent.

And then something came over me.  I just couldn’t do it anymore.  And I remember wondering if I was brave enough to break the rules.  To smear my paint and start over.  To make my own version of a tree. As a usual rule follower this was hard for me.   I moved my brush back and forth and all the colors smeared together to make this deep shade of black.  Oh shit.   I saw the instructor give me the side-eye.

But once the initial shock that I had actually gone rouge was over, I started to relax.  It didn’t appear as if anyone was going to kick me out.  And so I gave into my wild rebellion and made a dark sky (that for some reason had stars AND a sun), a bare tree, and these two simple words: “be you.”

Now looking at this painting, it feels like a premonition.  Is it crazy to think that? Probably.

But I can’t help but think that tree is me.  Me after chemo.  Bare.  All my leaves fallen and blown away.  Me naked against a dark sky.  Vulnerable.  And that sun?  The sun that I for some reason painted into the night.  That sun is the promise of light.  It makes total sense.  And it makes no sense at all.  But life is funny like that.

As this October marches on, I feel a certain weight of sadness.  Not a heavy coat of sadness, not winter sadness.  Maybe just windbreaker sadness.  I notice the trees starting to surrender their leaves.  The gentle way they dance to the ground.  Fall signals change, and now it will forever remind me of cancer.  October also happens to be Breast Cancer Awareness month, so there are lots of pink reminders, too.  (There are even pink ribbons on my cereal box.)

But this picture reminds me that there is always a “before”.  We never know when our lives are about to change.  So be brave.  Break the rules when you can.  Listen to that little voice telling you to blur the lines.

Be you.

(And also do your monthly self-checks & get those mammograms.)

So Worth It.

sun-rise“Getting married is one of the most unnatural things two people can do.” Those were my dad’s words on the day of my wedding.

I laughed. Cause this is so my dad. He and my mom never sugar-coated marriage. It never looked easy in my house growing up. It looked hard, and bumpy, and frustrating, and maddening, and also. . . worth it.

I was at a party with my boyfriend the night I met Joel. He knew instantly that he wanted to marry me. And if you know Joel at all, you know that it is nearly impossible for him to make a decision (he had to feel the weight of the silverware in his hand before we could register for it.) But with me . . . he just knew.

Our story starts with Joel pursuing me–  and me rejecting him.  Again. And again.  And again.  But when we finally starting dating, it was only five short months before I had a ring on my finger.  And before I could blink we were married, had two kids, a house, and a cancer diagnosis.

Joel says every time he looks at our garage ceiling, his stomach sinks. He was hanging installation in the garage the day we got the call that my biopsy revealed invasive ductile carcinoma.

I’ll never forget the way we clung to each other and sobbed. How could this be our story?

Joel went out and bought a pink leather journal. He brought it to each of my doctor appointments and wrote down everything the doctors said. He underlined the hopeful statements, and read them back to me when I felt like I might not make it.

Joel fed the boys, and tucked them in, and got them up, and dressed them, and put a smile on his face as he zipped their backpacks and drove them to school. He folded the laundry, and shaved my head, and made me tea.

In sickness and in health.

Our marriage isn’t always neat around the edges. It is not seamless, and shiny. We don’t always agree or walk the same way. Sometimes I roll my eyes, or flick him off behind his back (sorry honey . . . never in front of the kids), or scream and stomp up the stairs. Sometimes one of us feels underappreciated or unheard. Sometimes we have to dig up all of the messy stuff and study the pieces.

And it’s not like the movies. We aren’t riding around in a convertible with the wind blowing in our hair. There aren’t rose petals on our bed.

No, it is not like the movies.

It’s better.

It is noticing that Joel never starts eating until I am sitting at the table. He always says “bless you” when I sneeze (even when we are fighting). He puts toothpaste on my tooth brush in the mornings when I am running late. He makes me smoothies with organic fruit (even though he thinks it costs too much).   He washes my car, and holds my hand when we run errands, and scrapes the pieces of spinach out of my teeth. He tickles our boys until they can’t breathe with laughter. He picks up trash when he sees it on the sidewalk. He shovels other peoples’ driveways.   He sings along to Dave Matthews when he makes pancakes on Saturday mornings. He makes the bed every morning. He speaks highly of other people and he designs beautiful spaces.

And he loves me. Not just the pretty parts of me . . . but the broken parts, too.

And he sees me. Not just the stuff on the surface . . . but all the hidden parts, too.

And this feels like magic. Like moonlight on the ocean. Like snowflakes in the wind. Like sunlight on my face.

When I was at one of the lowest parts of my cancer battle, I remember telling him, “I would rather be sick with you, then healthy without you.”  And that is true.

Last month we went on an early anniversary trip. On the last day we got up early and hiked up to a lake in Rocky Mountain National Forest to watch the sun rise. We found the perfect spot to sit. I set up the camera behind us to capture this shot.

This is us. Backs to camera, knees touching, me leaning into him. This is us. Together watching the darkness fade. Together witnessing the promise that light always comes back.

And we were so ready for that light.

Ten Septembers ago I made the single best decision that I will ever make in my lifetime.  I married Joel.  He helps me be the best version of myself.  And I pray that I do the same for him.

Marriage is not about the wind blowing your hair as you glide across the sea.  It is more like holding hands while the storm rages around you.  Like getting drenched in life, and waiting patiently for the sun to dry you.  It is about choosing again and again to reach out.  To reach out, and to keep reaching out.  It is about promising to be all parts of you, even the ugly, crazy parts.  It is about keeping eye contact with each other no matter what.  It is hard, and messy, and beautiful, and real.

And so, so worth it.img_8790

 

 

 

 

 

 

 

How to suffer well.

Today I chatted briefly with a woman who has just been diagnosed with cancer.  I could see the suffering in her eyes.  And it all came back to me.

The way my spirit felt broken.  The lump in my throat.  The pit in my stomach.  They way I didn’t eat for days.  The middle of the night panics. The crying in the shower.  The forced smiles for my kids.  The tears that could bubble up in an instant.  The constant fear.

It is always amazing how quickly I can return there.  Sometimes when I’m running and my muscles are aching in the very best way, and my breathing is regular, and my heart feels strong — I think — maybe I can out run it. Maybe I can pretend it never happened at all.  And then I look over my shoulder, only to see “oncology appointment” written neatly in my planner.

While I was hiking in Colorado a couple of weeks ago, I couldn’t help but think about my suffering.  And this may sound strange to say, but I think I suffered well.  Could it be that there is an art to suffering? A graceful way to fall?

In my mind I kept writing and rewriting this blog:

How to suffer well:

Fall all the way to the bottom.  Don’t catch yourself.  Don’t brace yourself.  Don’t prepare for the landing.  Fall all the way down.  You are going there anyway.  To embrace the fall, is to shorten it.

And here is the thing about being at the bottom — you get this unique perspective of life, you get this unbelievable view of -up. Sometimes I would imagine myself on the bottom of the ocean floor, life swirling around me in this rhythm that wasn’t mine.  I would picture bubbles, and slanted light, and that feeling of being a kid in the pool and opening your eyes underwater and looking at the sky.  From down there the light bends, and colors merge, and you can hear sound, but no words, and you know when you rise to the surface you will fill your lungs with air, just to float back down again.

Sometimes beautiful, tragic, devastating, and powerful things happen at the bottom. Fall all the way down.

Shed your leaves.  Let go of all the stuff that covers you up.  This is hard to do.  And cancer doesn’t leave you with much time.  Sometimes you find yourself shaving your head when you were only months away from having your hair long enough to pull off a side braid.  Sometimes knives are involved, and surgical glue.  Sometimes you don’t have a choice as to how and when you will let your leaves go.  And you find yourself staring in the mirror bald and broken wondering how you ever thought a zit, a patch of gray hair, a new found wrinkle, or jeans that didn’t fit — ever brought you down.  Let all the stuff that covers you up -go.  Be bare.

Sometimes there is such beauty in the bareness.

Finally, be both. Be both brave and terrified.  Take deep breaths and steps forward. Put on your tennis shoes, turn your music up and move. And also, allow yourself to cry.  To wilt.  To curl up in a ball on the couch for as long as you can.  Be both graceful and a mess.  Tie up your scarf, put on your dangling earrings and dare yourself to dance.  And also, cry so hard that your eyes swell up.  Go out into the world red, and blotchy, and broken.  Be both.  Never make yourself choose.

There is such freedom in both.

So there is my advice: fall all the way to the bottom, shed your leaves, and be both.  I call it the art of suffering.  It is something I never aspired to be good at, but life is funny like that.  And you don’t have to have cancer to suffer this way, perhaps it is a universal truth.  To kneel down to the dragon.  To surrender yourself in a way that doesn’t make you weak, just vulnerable.  To say out loud, “I am broken.” I like to comfort myself by believing that to suffer well, is to heal well.

And here is the most important part . . . you will heal.  It’s a promise.  Your healing might not look like what you think it should look like, but you will heal.  This is how I know:

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The sun always rises = darkness never lasts.

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There is beauty in the shadows.

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Love will always find a way.

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Her funeral was magic.

kathy and melissaKathy Cramer.  She was one of my mom’s first friends in St. Louis, and because we had no other family in the area, she became our chosen family.  She was often at our table on holidays- stopping by my parent’s house for a drink, or just dropping off the perfect present to my boys for no reason at all.  She always smelled great, looked beautiful, and hugged me fiercely.  I always liked Kathy.  She was kind, and good, and made me feel special. She brought with her delicious food, engaging conversation, and a contagious, positive energy.

Breast cancer made us closer.  I had it.  She had it.  Different stages.  Different treatment plans.  But the same cancer.  We shared text messages, conversations, and the hope that both of us would be well again.

Last week as I drove to the ICU.  I knew I would be saying goodbye.

And all that energy, and sparkle that she had always radiated, was gone.  She was dying.  I have never seen someone dying before.  It is not like the movies.  It is not peaceful, and pretty.  It is raw, and hard to look at, and scary . . . and real.  I watched my mom and her friends whisper their goodbyes.  I watched her nephew stroke her face. I watched her husband hold her hand, and kiss her head.  I watched her chest rise and fall, each breath was a battle.

She died later that night.

And it all feels like it happened in a blink of an eye.  She was just here.  She was this force, this fire, this light.  How is that possible that she is gone?

How is it possible that we are all here, and then in a blink, we’re not?

It feels impossible to digest.  And yet, it is the only thing we know to be true about life: it ends.  We are all going to die.  It is a truth, a reality.  And yet, it shocks us, surprises us, knocks us down, and leaves us shaking our heads and hands.  How can she be gone?

Today was her funeral.  And to say that it was magic, might sound strange, but it was: it was magic.  It was inspiring, and devastating, and joyful.  It was beautiful and full of such a sweet sorrow.  It was, as her husband named it:  a “celebration of impact”.

Kathy spent her life’s work as writer, a motivational speaker, an innovator, and a risk-taker who developed a organization that focused on the impact of being positive.  I watched her TED Talk recently, and she tells the audience not to stay in the negative for too long, to move it aside and say, “besides from all of that, I can solve this anyway.”  And somehow even though her closest family members, friends, and husband were beyond devastated with the loss of Kathy’s life, they focused on the positive.

They focused on their memories, on their gratitude for knowing her.  On their ability to see the extensive reach of her wisdom.  Instead of focusing on her death, they focused on her life.

Is it possible to be lifted up at funeral? To be inspired, and motivated, and to leave feeling grateful?  Is it possible for her husband to stand up – on what will probably be the saddest day of his life – and so gracefully speak of his love?  Yes.  Her funeral was magic.

It is true that we will all die.

But it is also true that Energy can neither be created nor destroyed; rather, it transforms from one form to another.

And it has to be true that Kathy was there today, in the music that left us with chills, in the magic that left us hopeful and motivated to walk out into the summer air, and in the moments that left us feeling the weight of death, and the hope of love. 

As the lines of a Mary Oliver poem read at her funeral say “Doesn’t everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life?”

It is a blessing, and a burden to remember these truths.  We are blessed with this “one wild and precious life,”  and we are burdened with the question: “what is it you plan to do?”

Kathy and I spoke about how cancer brings you a certain clarity.  A new lens to look through.  How the depth of the small stuff sticks with you.  How your ability to notice and recognize beauty intensifies.

And Kathy lived all the way up until she died.  She recognized her one “wild and precious life” and she did great things.

Today I left her funeral wondering what risks I will be willing to take?  What leaps of faith will I be willing to make?  What will I do with my one “wild and precious life”?  The teacher in me thought about working backwards with the end in mind.

I too, want a funeral, that’s magic.

 

 

I did it!

 

Last summer I wrote this about my cancer experience: “I described this journey as a triathlon: bike (chemo), swim (surgery), and run (five years of ovarian suppression and hormone blockers).  I guess I am here finishing up the swim.  Tomorrow will be three weeks since surgery.  Every day the pain lessens, and my boobs look more like body parts, and less like Frankenstein’s head.  But as I end this leg of the race, I am feeling that familiar dread of the unknown.  What will the run be like?  Is my body strong enough to keep going?  What does forced menopause look like for a 36-year-old body? What will the side effects be of these new meds? When will I get my full energy back? How long until my hair doesn’t scream “cancer patient”?”

Today, (about 14 months post double-mastectomy), I completed my first triathlon.  I used the triathlon metaphor as a way for me to visualize my breast cancer journey.  I said the swim was like the surgery because I was a swimmer when I was young and had a lot of experience with it, and after Alex was born I had a pretty intense surgery to remove a blood clot- so surgery was not new to me either.

I said chemo was like the bike ride, because I had no experience riding for long distances, and it was the part that scared me the most.

And I said the five years of pills and ovarian suppression were like the run.  Because it seemed the most doable and familiar stretch of the journey– I completed three half-marathons before having kids.

I wanted to do a real triathlon so that I could prove to myself that my body was back.  To prove that it belonged to me, that it wasn’t a prisoner to my port, the heaviness of chemo, or the slow movements after surgery.  I wanted to feel strong again.

Last night it was hard to sleep.

I was scared and excited.

I felt ready, and unsure.

I felt like a chapter was closing, and another was opening.

This morning there was a lot of waiting (there always is with unknown and scary things), and then before I knew it I was in the water, swimming, and breathing.

If I concentrated on the full distance, I felt overwhelmed.  But if I focused on Joel walking along the shore of the lake taking pictures of me, I felt okay.  I kept moving forward.

I wore a swimsuit, not a tri-suit, so I am sure a few people got a good laugh at me trying to squeeze myself into some spandex biker shorts with wet legs.  And then I was on the bike.  At first it was nice.  I didn’t feel too hot, I felt my breathing starting to regulate, and the sun and wind were at my back.  Then people started zooming by me, and I started to slow.  I kept thinking, how many miles has it been?  Can I really bike 15 miles? But I forced myself to remember chemo.  Chemo was the bike.  I can do this.  I focused on keeping my legs moving.  Just keep moving forward.

The bike was finished, now the run.  My legs felt like dead weight, I really wanted to sit down.  Just rest for a few minutes.  But I pushed on.  I focused on my breathing, one foot in front of the other.  Just keep moving forward. And then I saw it.  The finish line.  I couldn’t help but smile.  I did it.

My body is back.  It belongs to me.  I wore a swimsuit and biker shorts to run –I didn’t even need a sports bra (implants don’t bounce!).  My hair no longer screams “cancer patient”, in fact I don’t think anyone except my few friends and family members there knew I had cancer.  My cancer journey isn’t defining me in the way it once was.  I am someone new.  I am strong, and experienced at focusing on the small moments, movements, and emotions that make the long game possible.

No matter what comes my way, I know that I can concentrate on my breathing, put one foot in front of the other, and keep moving forward.

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