My Garden

SONY DSC  Last week I had my head shaved.  I wanted to do it before it started falling out.  I didn’t want to wake up one morning and find a pile of hair on my pillow.

My friends were there.  A lot of them.  I was facing them as my friend, and hairstylist, shaved my entire head.  For some strange reason it reminded me of my wedding day.  So many loving faces looking at me.  When she turned me around to look in the mirror, I stared at myself and cried.  It is sad to lose your hair.  When I looked in the mirror- I saw a cancer patient staring back at me.  Hard to see me in that reflection.

Then everyone hugged me and told me I looked beautiful.  I guess that is what you are supposed to say.  I didn’t feel beautiful . . . until I saw this picture.  I feel beautiful in this picture, but not in the way that I have defined beauty before.  I see myself there in the middle of so many of those who love me, and it looks beautiful.  All of it.  My shaved head, my smile, my sparkling eyes, my gorgeous friends.  It is a truly beautiful picture.

I wish that feeling carried over to every morning when I look it the mirror.  It still shocks me,  It’s me, but it’s not me.

Alex told me he like it and lifted his shirt and asked me to scratch his back with my head.  “It will be a good back-scratcher mom.”

Andy cried.  He has been able to verbalize much of his distaste for my new look.  I’ve been able to take most of it with a smile, but the morning he said, “you don’t look like my mom”.  I cried.  He has come around since then.  Today he told me he loved my hair and that I was his “beautiful momma.”

Here is the thing– despite the circles under my eyes, my weird alien head, and my creepy-ass port — I have never felt more beautiful in my entire life.  Not that surface level beauty, but that deep down beauty.

Cancer has given the people in my life the opportunity to tell me how they see me.  I have gotten emails, texts, letters, cards, and Facebook messages that I would never dream of getting.  I knew I was loved, but you – you have made me feel adored.

I have been teaching for 11 years.  I have always worked with students who are considered to be “at-risk”.  “At-risk” just means that they are at-risk for not graduating high school.  I have loved my profession.  I have loved my students.  I have always considered my work with them such a blessing.  Sometimes it is hard, and draining — and sometimes I feel like I have no idea what I am doing and wonder if I am really making a difference.

Hearing from my students about how they see me- has made me feel beautiful –all the way to my core.  Cancer gave me that opportunity.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ― Maya Angelou

This is true.  I am being showered in this truth.

Stop being hard on yourself about how you look.  Stop spending time in the mirror wishing something was different.  No matter what your look like, or what you have – or don’t — you have the power to make others feel valued, noticed, and loved.  Do it.  Do it every chance you get.  You will never regret it.

On my toughest work days, my dad would always say, “you are just planting seeds in these kids, don’t expect to see the results yet.”

Cancer has given me the opportunity to see my tiny garden, and it is beautiful.

I guess you can say I am starting to get a glimpse of the “bright side”, but trust me– there is still darkness.  I found out today that I tested positive for a genetic mutation that is linked with colon cancer.  I don’t really know what that means.  Something about needing to see a genetic counselor, for more tests, and more waiting.  Blah.  I hope it doesn’t mean more cancer in my future — I do not want to do this again.  In fact, I don’t want to do this now.  Is it wrong to dream about the doctors saying “whoops, our mistake, you don’t really have cancer”?  I know that is not going to happen.  I know that on New Year’s Eve I get to have my second round of chemo, and that fills me with the ultimate dread.  In my moments of weakness I tell Joel “I hate this.  I can’t do this anymore.”

But this is the crazy thing about adversity — you don’t have a choice.  I have to do it.  No choice.  I have cancer.

But I also have a garden 🙂

It Feels Like Fall

In high school, the St. Louis Post Dispatch interviewed me after receiving a leadership award.  When they asked me who my role model was, I told them: “a tree.”

I have always seen trees a perfect symbol for balance.  They change with the seasons and they give more than they take.

I haven’t written much since my first chemo.  It has left me in this thick fog.  Everything feels heavy.  I had this vision of being a fighter, of bravely and gracefully beating this cancer.  Yet, I feel like I’ve been benched.  Like I am on the sidelines trying to catch my breath.  I’ve been left wondering what it looks like to beat cancer — to fight.  Can you do it on your couch?  Can you do it with your head down on your desk, or leaning against the wall? It is not the fight I imagined.  There is no running, or sweating, or using your muscles.  Everything is too heavy.

I’ve decided that it feels like letting go.  It feels like fall.  Like I am that tree loosing all of my leaves.  Like I am preparing for a bitter winter with heavy winds, and even heavier snows.  It is not the fight I imagined.  There is such sorrow in this change.  A deep sadness that comes with suffering.  But strangely — it is a peaceful sadness.

I am losing my energy, and soon– I will lose my hair.

A naked tree in the moonlight.

Luckily, I also know about the promise of spring.  Your voices, and notes, and letters, and love –remind me.  Spring will find me.  And all that has been lost will be found.  And I will be green, and new in the sunlight.

Chemo #1

First of all, there are a million positive things I could say right now.  I have never been so touched by acts of such pure generosity and love.  The way you guys are carrying me through this is hard to explain.  I will write about this beauty, and love later.

Today sucked.  It was scary and long.  I was in “Pod 1” which is a big room with about 10 patient chairs and a nurse’s station.  It was awkward being with strangers as I experienced one of the hardest moments of my life.  I was probably given about 6 different medications through my IV that was hooked into my port (which feels beyond sore and tender).  I silently cried during the first two rounds of drugs.  It is so difficult knowing that you have to poison your whole body to kill the cancer.

I tried my best to visualize the drugs coming into my body and destroying the cancer.

I kept thinking about a retreat I attended in college.  A nun asked us to lay down on the floor in a way that represented our relationship to prayer, and God.  It was a strange request, but I remember laying down on my back with my arms spread wide open, and my eyes closed.  I felt vulnerable, but safe.  I felt open, and free.  If I had to do the same thing right now- I would chose the fetal position.  Because I feel scared, and hesitant.

But this is okay.  It is okay because I know that by chemo #6 — I will have my arms spread wide open.
I still have a lot to process.  A lot to let go of.  A lot to grieve.

Chemo # 1: my port feels like a bad burn, my body feels heavy, I have heart burn (which I have never had before), and I am scared to go to sleep because I have no idea what state I will wake up in.  Will it be worse?

I was planning on going to work tomorrow.  There are some people that get chemo –feel fine and then go to work.  I want to be one of those people! The doctors asked me to take off.  Told me to rest, and to come in for a shot that will help my white blood cells increase.  They said I should expect joint pain.

Fetal position.

But this is okay.  It is okay because I know that by chemo #6 — I will have my arms spread wide open.

“Don’t drink the medicine.”

We aren’t using the word “cancer” with our boys.  I know that they don’t have any connotation with the word cancer, but the rest of the world does.  We told them that I had to take a medicine to get me ready for surgery, and that the medicine would make my hair fall out.

Alex listened and then asked if he could play with his train.  I said sure, but that if he had any questions to feel free to ask me.  Two minutes later he said, “I have a question.  What if you’re not pretty any more?”  I told him that he could help me find some cute scarves and hats to cover my bald head.  He said, “I think a wig would be better.”

When I told Andy, he instantly started bawling.  Big tears. Sad ones.  “No mommy. I don’t want you to be bald.  I want you to keep your hair.  Please don’t drink the medicine.”

I am sure they will be scared when they see me for the first time without hair.  It will be new, and weird.

I’ve been keeping my port covered up.  It is creepy and it hurts.  The thought of getting a needle jabbed in there tomorrow makes me tense up.

But pretty soon this will be normal.  My bald head, my creepy port. They will be part of my “new normal.”  I learned about “new normals” during my blood clot days.  I remember crying as I pulled on my compression stockings and gave myself Lovenox shots in my stomach.  Now, my compression stockings are no different than my socks– just something I put on every morning without thinking about it.  Life is crazy that way. We adapt.

My mind is kind of blown that chemo starts tomorrow.

Chemo. I think I am still in denial.  I have breast cancer.  I still have to remind myself.

I’ve got no choice — gotta move forward.

Tonight- I am sad.

Tonight- I am sad.  I see the whole journey stretched out before me and it seems too big.  Too much. Too tall. Too wide.  An ocean of impossible.  I feel too tired to start.  Too scared to dream big. Too overwhelmed to move an inch.

The truth: I hate this.

I hate that my heart felt sad while I was decorating the tree with my kids.  They are bursting with excitement about Christmas, and I feel broken. Underwater.

Deep breaths.  One step at a time. I know.

And then I want to slap myself out it.  Scream at myself to get it together.

Why? Because of you.  Because you have flooded my inbox with plans and positivity.  Because my voicemail is full, and I have a hundred texts of encouragement. Because you have made me laugh, poured me wine, drug me out, baked me bread, brought me food, given me gifts, written me cards, played with my kids, prayed with me and for me,  held me, hugged me, and loved me from a far.

Snuggling with my boys tonight I felt so grateful that this cancer is inside of my body, and not theirs.  Some of you reading this have watched your children go through this.  Your babies.  My head is bowed to you.

Deep breaths. One step at a time. I know.

I know how this story ends.  I get to live.  I get to raise my boys.  I get to dance at their weddings.  I know.

Oncolologybobology.

So I have an oncologist.  He is going to be the guy that figures out how much poison to run through my veins.  I have spent my entire adult life trying to keep poisons out of my body.  I think about pesticides, aluminum in my deodorant, flame retardants in my kids pajamas, and hormones in my milk.

But now that I have cancer, I need chemicals.  Potent, powerful chemicals that will make my hair fall out and most likely destroy my fertility.  I feel grateful that Joel and I had already decided that we were done having kids.  He is a pretty cool guy.  (For some reason he reminds me of Jon Stewart.)  Like my surgeon, he is smart and confident, and wants to help me get through this.  He is my friend’s Lisa’s oncologist too.  She just beat breast cancer and has been my trail blazer making my path easier.

In order to get chemo you need to get a port.  A tiny tube will be implanted in my chest, close to my neck, to make hooking me up to the IVs easier.  I get that fun device on Monday.  On Tuesday I will have an echo & a full body cat scan.  Chemo can damage your heart, so they need to get a baseline.  I told my oncologist I was worried that they would find more cancer during the cat scan.  He said, “we won’t.”  He better be right.  And then, on Wednesday I get my first round of chemo.

Most likely I will be bald by Christmas.  I don’t know if I want to wear a wig.  I don’t know if I want to wear scarves.  I don’t know if I want to wear hats.  I don’t know if I want to just be bald.  I do know I wish my boys didn’t have to see me lose my hair. I think it will scare them. I like “hippie” looking things and big earrings.  I am sure I will figure out some way to pull this off.

I’ve lost 12 pound since the ultrasound that identified “spots of concern”.  I need to gain weight before Wednesday.  This is extremely hard for me because when I am stressed- food is impossible to get down.  Yesterday I had a break through and craved cheese fries (which I never eat).  I downed them and then had red curry for dinner.  Pray that I can pack on some pounds before the chemo steals my appetite.

Two different doctors have prescribed me anti-anxiety/depression meds.  I have not picked up those prescriptions.  I do feel scared, and I do feel sad.  But isn’t that normal? We discussed a quote the other day with my students- it was something like- “Don’t fight the wave.  Ride the wave.”  I’m trying to ride this wave, and I am pretty sure that involves feelings of anxiety and sadness. But I know that if I embrace this, I will find peace.

How it all started & fairness.

Found a lump.

Wasn’t worried because I had a cyst last year in a similar spot that was totally benign.

Called doctor.

Made appointment.

Saw nurse practitioner at my OBGYN’s office.  She said it felt like the same cyst, didn’t feel malignant, and that I could just wait and watch it for 3-6 months.  I said, no.  Asked for an ultrasound.

Thank God.

Ultrasound revealed two spots of concern.

Scheduled biopsy.

Had biopsy.  (they struggled to get my boob numb so I had the pleasure of feeling the needle)

They said it looked benign. Reassured me that 90% of the lumps they biopsy in women my age are benign.

I felt relieved. Joel felt relieved.

Next day went shopping. Got home. Got phone call.

One spot was a benign fibroid.  The other one: invasive ductal carcinoma.

That was the day before Thanksgiving.

I will remember that phone call for the rest of my life.  Joel had his face pressed against mine, and we listened together to the devastating news.  I called my mom first and told her it was cancer.  I remember telling her I was so sorry.  Watching my family deal with the news has been so hard.  I feel like I have stolen some of their happiness, too.  My dad came to get the boys so they wouldn’t have to see us fall apart.  Joel and I just held each other and cried.  And vowed to him that I would not leave him.

That was one shitty day.

I’ve had a few moments of “this isn’t fair”.  But really– it is.  My life has been beyond blessed.  For those of you who know me well – you know that I am always saying, “something has to go wrong.  This is just too good.”  I grew up with a loving family. With parents who have always put my brother and I first.  Parents who are silly, generous, honest, open, and know just what I need right when I need it.  Parents who make me feel like I am the center of their world, and a brother who is beyond loyal.  I’ve never had one need that was not met.  I went to great schools, got a fantastic education, and have been provided with every possible opportunity to learn, explore, and grow.  I’ve traveled internationally, made connections with people from all different walks of life, and been loved by people who have never asked me to be anything more than me.  I fell in love with my soul-mate.  I have a job that I would probably do even if I wasn’t paid.  I see God where some see darkness.  I feel happy 98% of the time.  I dream big, and don’t feel scared to risk.  I’ve run great distances and written poems that make me proud.  I live in a house that feels like a home.  I have neighbors who drink wine with me in the middle of day, and bring me meals for no reason. I have friends, who are selfless and remind me how to be silly. Most importantly I have given birth to two boys who are so magical.  They have changed me forever, and make me feel loved and special every single day.  I have had an amazing life.

Working with at-risk youth shows you firsthand what unfair looks like.  Unfair is being treated differently because of your skin color, dress, or sexual orientation. Unfair is being sexually abused by your mom’s boyfriends, being beaten by strangers, and not having food in your refrigerator. I know what unfair looks like.

I have cancer and it fucking sucks (that was for you Tim Bopp). It really fucking sucks.  But it is not unfair.  It is part of life. Part of my life.  But I have everything I need to beat it: the best medical team, the most amazing support system, health insurance, and the will to get through it.

Well, I am not sure where all of that came from.  Now I’m tired.  I’ll fill you in on the oncology mumbo-jumbo tomorrow.

Your comments, facebook “likes”, emails, texts, and voicemails – do not unnoticed, even if I don’t respond.  They are SO needed and so appreciated.  Whenever I feel weak, I grab my phone and see your love. Thank you. Thank you.