Just a Rant...

Forgive me but I'm going to have a little bit of a rant and I am using the metaphor of red to begin- red is anger, red is ranting, red is fury, red...  I'm seeing red.... 

I've grown exceptionally weary of one word this week-  just-.  Not just as in fair, but just as in only.  Oh, you're just getting one chemo drug (i.e. dose of poison) this week.  You have just twelve weeks left of treatment.  You just have to drive 90 miles.  You just have stage III cancer.  You just have one site of metastasis.  You just lost some of your hair.  You're just tired.  You've just got infection in two of your fingers.  You just have to get through the summer.  You just have three hours in the clinic today. 

We use "just" to minimize things.  It is well meaning and well intended.  We want to downplay and make things better.  I know I've employed this with my own children.  Last week when my son was buried in homework I told him he just had to get through a few more weeks of school until summer.  It was meant to be positive and encouraging.  He gave me the look that let me know it was neither of those things.  He was having a real crisis.  He was in real stress.  There was nothing "just" about the situation.   He wanted validated not minimized.

Because we use the word "just" to minimize there are situations where it is incredibly demeaning.  I tread lightly here because I am still a bit raw but this week I was referred to as "just a teacher".  If you are reading this and are a teacher or love a teacher or value education the hair on your neck just stood on end.  It sounds so negative to be just a teacher.  I've never once heard Brett's doctor referred to as just an oncologist.  I've never heard anyone say, "You've just got cancer."  But, yes, I'm just a teacher.  I won't lie.  I became internally angry at the comment.  Then I tried to rationalize that this person didn't really mean it the way it sounded (but I think they did).  I then entered into this phase of deep contemplation wondering how many times I have been guilty of minimizing someone's calling, career, passion, choice.  I'm certain I'm guilty.  I'm certain that it hurt when I did it.  I have come to hate the word "just". 

I've been thinking a lot about my electronic footprint.  What do I want left behind for people to discover when I'm gone?  They say if you post something on the internet it remains forever.  That's a heavy thought, especially for someone who processes "aloud" by blogging and baring their soul.  I don't share this rant to point a finger at someone.  My hope is to challenge myself to choose my words carefully.  I don't want to take for granted what someone is going through.  I don't want to minimize someone's choices and accomplishments. 

So, if this post becomes part of my electronic footprint and my legacy what would I want people to know?  First of all, you can never just have cancer.  It encompasses every aspect of your life.  It overshadows every day, every action, every decision.  You can never just put it away for awhile.  You have to acknowledge this and work within it.  You have to surround yourself with those who are positive and supportive and allow you to rant, to cry, to laugh, to share.    Secondly, I'm just a teacher.  Cancer is just a teacher.  It changes you forever.  It teaches you to align your priorities and count your blessings.  It teaches you to treasure life and breath and sunshine and laughter and time.  It teaches you to reach out to others and to open yourself up to others who want to help.  Cancer is a powerful teacher.  If I can have even one tiny speck of that impact upon my students then I am happy to be just a teacher. 

The Quilt

When I was little we'd make the trip to Portsmouth, Virginia, to see my grandparents.  We would stay in what I thought was their mansion (it had two floors!) and I would sleep under one of my grandmother's quilts.  I would wake to my grandfather's whistling and the smell of bacon and sausage cooking.  I would lie under that quilt and smile.  Even at a tender age something told me to stay and savor the moment.  When Grandma passed my father went to Virginia and asked if there was anything I wanted and I asked for a quilt.  Throughout the years during hard times in life I still wrap up in my grandmother's quilt.  For a while it continued to smell like her house and I was afraid to wash it.

I've heard it said that God's plan is like a quilt.  He is crafting something amazing and we only see the messy underneath.  We see the stitching and piecing together and one day we will see the quilt in all of its glory.

I received news last night and it has my mind  wandering.  I look at my nearly seventeen year old son and I wonder.  If I truly understood and accepted that time on Earth has limits would I have held him a little closer and smelled that wonderful newborn smell just  a few minutes more?  Would I have rocked him to sleep one more time or walked holding his tiny hand just one more time than I did?  Would I have put down my own work to snuggle and play?

If I am truly to understand that time has limits is it so bad that I now slip him an extra $20 for lunches when I think his dad isn't watching?  Will I remember to treasure his birthday in a few weeks and to take it all in - stay and savor the moment a little longer?  Will I sacrifice all that I can to help him pursue his dreams and be there to support him?  Will I remember not to be too upset when I go downstairs to find him playing video games in his underwear amidst dirty clothes and dirty dishes?  Will we laugh at every chance we get?  Will I treasure those kisses on the forehead I'm still blessed to receive?

Mothers should not lose their sons.  Cancer should not be allowed to take the ones we love.  Life is messed up- it's the messy underside.

Lord, I beg today for a glimpse of the beautiful quilt you are creating.  I would like to see but one square and your careful stitching to reassure my soul of what is to come and how it will all make sense one day.  If it is not your will that I be allowed to see the beautiful side I pray you envelope me in the messy underside and allow me to learn to be still in your comfort, to seek the smell of your house, and to listen carefully for your whistling.

A Ray of Sunshine and a Lost Soul

Yesterday was chemo Thursday.  College finals are complete for my daughter so she decided to come with Brett and me at the last minute.  She and I planned to plant Dad in his chair and go for a nice run in the sunshine.  As we entered the chemo room we were greeted by a bald young woman with a radiant smile.  She immediately began talking to us, asking questions, showing us the ladybug pillow the children she babysits gave her.  Kylea and I left for a run feeling a bit sad.  Here was a young woman Kylea's age hooked up to chemo and looking a bit ragged.  

When we returned an hour later this young woman was still going strong. She continued to come up with one liners keeping everyone on their toes.  She asked questions and no topic was off limits.  She asked Kylea and I why we run when no one is chasing us. She tried on wigs on her way to the bathroom and selected the one with really long hair for a picture- claiming she wanted to be in an 80's hair band.  As we laughed her mother asked if I would  like to see a picture of her "before".  She shared her senior picture- long brown hair in waves down to her waist.  

This young lady then settled in and, finding Kylea to be the same age and to have an unusual amount of things in common, she began to share her story.  Six weeks ago she was suffering from abdominal pain and nausea.  Her doctor ran tests and told her she was pregnant.  She said that was very exciting because it was impossible and she always wanted to be part of a miracle.  A week later she found herself in the ER and was diagnosed with a very rare germ cell tumor in her abdomen that had ruptured and caused internal bleeding.  After surgery she is now going through chemo for four cycles.  She lost her ability to have children and faces a lifetime of hormone replacement therapies.  She's receiving transfusions and spends a lot of time in a recliner these days.  She had to withdraw from college temporarily due to time and money constraints.  She lost her hair, that amazing hair.  She lost weight- she reported being 150 lbs. and what we met was a very petite and frail young lady of maybe 100 lbs.  

Her story could have been so sad but she would not allow it.  She infused humor.  She spoke of the blessings she had.  She told of how she had struggled to pay for college and now thanks to a very rare cancer she'll get lots of scholarships to attain her goal to be a pediatrician.  She laughed.  She teased.  She was so open and honest.  She asked another lady why she was in treatment and when the lady explained her breast cancer battle (a primary tumor on each side) she looked at her and said, "Well, excuse me, but... crap".  We all just burst out laughing.  She continued to say that no one expects cancer and it always blindsides you.  

Kylea and I went outside to seek the sunshine but we found it in the chemo room.  

Now, a lost soul...  After such an amazing day yesterday it was difficult to turn on the news today and hear of a woman in Florida who faked breast cancer to get financial help to pay for implants.  Really?  She preyed upon hospice workers to make donations.  I'd like to assume that this woman has never been touched by the devastation of cancer and that she acted out of total and complete ignorance.  If this is the case I hope part of her restitution is to care for cancer patients in some form.  And that's all I have to say that is appropriate for print.  Poor lost soul.

 

Thankful for Leaves

http://www.youtube.com/watch?v=S9_YeNO6jL4&noredirect=1

I spent most of my day today in the car for work.  This song struck me and was one I wanted to share with so many people in my life.  There are so many leaves of my family tree out there supporting me.

In the fall leaves on trees provide us beauty.  Just as winter approaches we get this amazing burst of color.  Leaves can brighten the landscape- provide color to a bland brown hill.  There are many in my life who have provided color on dark days.

Leaves are where energy is converted for use by a tree.  Without leaves this conversion process does not take place and the tree withers.  Believe me there are many of you out there that have provided energy on days that I felt I could not take one more breath, one more step.

Leaves aid in water transportation and prevent dehydration.  There have been many dry days lately and so many of you have provided much needed moisture to my dry and cracking soul.  Leaves also provide shade for the tree and keep it cool.  There are so many times I have rested in your shade.

Finally, one cannot ignore the beautiful sound of wind rustling through the leaves in the mountains or the squeals of delight when children dive into a pile of leaves and feel its crackling cushion catching them.  Leaves can be a safety net.  Leaves can provide calm.  Leaves can signal us to incoming weather and help us prepare.

You are the leaves on my family tree.  Those of you who read, who respond, who send notes, who smile, who cry, who listen, who pray.  I'm so thankful for leaves today!

Fighting Darkness and the Heavy Weight of a Strange Guilt

I got quiet, speechless.  Lately it has been difficult to find words.  I search for them but don't find the exact ones that represent things I've been feeling.  I can think of one descriptor- dark.  It seems like I've been on my knees feeling around for a flashlight but as soon as I think I've located it it rolls away and the search begins again.  I won't abandon the search but it's been a trying few weeks.  These have been dark days.  There are definite moments when the skies break and I am bathed in light but the dark inevitably returns.  And, in the dark the words I seek disappear. The silence is eerily soothing.  I think I'm breathing and regrouping- going through a valley, about to make a climb toward the light. 

Several of the women in my support group have buried their husbands the past few weeks.  One just made a call to hospice and she and her husband have decided to suspend treatments and let the disease take its course.  They are busy making memories with the time that remains.  These women are incredibly strong.  They share their stories to light the way for those that may have to walk the same journey in the future.  They are flashlights in the dark world of cancer. 

I wrestle with their losses and their stories.  I have a sense of guilt.  Brett is doing well.  His side effects have been fairly manageable.  His treatment has a large chance of being successful.  He very well could be "cured" or at least achieve a lengthy remission.  I feel badly that they have suffered such losses and we are having a very different experience at the moment.  I know they don't begrudge me this hope.  I know they are truly happy that we are on a different side of the disease.  But, the weight of this strange guilt has been sitting on my chest today- been difficult to catch my breath.  And, honestly, there's fear because I want to stay on this side of the disease.  I don't want to follow them.  They display amazing strength, faith, and grace.  Would I in their shoes?  Sure makes me examine myself deeply. 

I took a night hike once at a teachers' camp in Wisconsin.  It was amazing.  We sat in the dark for a few moments allowing our eyes to adjust.  We really could see our way in the darkness.  Because we were in the quiet darkness we saw and heard beavers alerting our arrival with slaps of their tail on the water.  We startled a deer.  We didn't see the bugs and critters that would normally startle me.  It felt incredibly safe there in the dark.  I feel safe in my recent darkness and I'm letting my eyes adjust to the darkness and walking the path.  I don't want to fear the dark but I don't want this hike to last much longer.  Time to find the flashlight.  I'm certain I'll reach it soon. 

Communication is a Two Way Street

If you've ever driven down a one way street you know you're pretty lonely.  There's no one on either side of you to look at or greet.  Today, however, I began to think about two way streets which in my mind are the opposite- two lanes going against each other with plenty to take in all around.  Is this what we really believe about communication?  I understand the metaphor to represent that communicating has to go both directions to be successful but today I thought about this metaphor a little more deeply.  Do we really want our communication to be represented by vehicles going in opposite directions and simply passing each other at some point?  Do we really want communication to be represented by busy streets and traffic and honking?  I experienced some of that today on some two way streets as I traveled for work.

I joined an online support group for cancer caregivers.  I wanted a place to share where other people "get it".  I wanted to connect with people going through some of the same things in life.  But, honestly, I was worried about connecting with strangers and building open communication in an online forum (she ironically says in a blog).  I wasn't sure how we could carry on dialogue and support each other without directly speaking, without sharing our last names, where we lived, and other details that might identify us to each other.  I was skeptical.  What I have found, though, is that I have bonded with several other caregivers online.  I know them by "name" and we check in with each other nearly every day.  We can be real.  We can say the ugly things we bottle up all day.  We can talk about how angry we are at cancer and its many inconveniences.  We communicate so well.  Today I was pondering why it works.  I think it comes down to two reasons.  First of all, we are all on the same street.  We understand the terrain.  Second of all, we're going down the street side by side, not against each other in passing.  We post and take time to reflect and ponder before reaching out to each other.  I think it has created an atmosphere of communication that is a model for everyday life and my interactions with others.  When I "talk" with these new found friends I first read or "listen", then I contemplate and prepare my thoughts, and then I respond. 

All of this pondering of two way streets and communication was borne from a problem I am having communicating with someone.  I say things that are taken incorrectly and then the response is defensive and hurtful.  I don't think this person is intending this and I'm certainly not intending to be abrupt or hurtful.  We obviously are having a problem- our communication car has broken down on the side of the road and we need a tow truck desperately.  Today I was thinking about what works in the online support group and how it could apply to this situation.  Maybe I'm not truly listening before I respond.  Maybe I'm not establishing a clear direction.  Maybe I'm driving too fast for conditions and I need to slow down and carefully choose my words and responses.  This person and I are definitely on a two way street when it comes to communication.  We pass each other and once in awhile we make a brief connection but it doesn't last as traffic flows.  We need to find a way to go in the same direction.  I'm challenging myself to make a u-turn this week.  I'm also challenging myself to replace the two way street metaphor with a new one to describe how I think communication can truly be represented.  With all the road work and detours going on around my home town it is definitely time for a new metaphor.

It's a Numbers Game

I've always had a fascination with numbers.  Lately my life has become all about numbers.  We are hoping the odds are in our favor.  We are counting down treatments.  We are worrying about dosages- 120 mg versus 180 mg.  We have been supplied five year survival rates.  We have been supplied percentage of risk that cancer will return to the liver.  We count mileage for our taxes. We count two days out from treatments knowing when Brett will have his worst day and then get better.  We count money for bills and expenses.  We count hours during treatment and hours between.

I try to count good things.  I count blessings.  I count friends.  I count good days.  I count jogging mileage in hopes of increasing slowly and steadily.  I count days until summer break.  I count days until my daughter's wedding.  I count days until my son's first baseball game as a varsity player with great excitement for him. 

I am admittedly a bit compulsive with my counting and measuring.  For example, I drive Brett completely crazy with my dislike for odd numbers.  I won't stop running at 49 minutes- I'll go 50.  I won't walk 21 laps at the gym- I'll go 22.  I like even numbers.  I like things neat and tidy and divisible into two equal parts.  It's a part of my type A personality that reveals itself more and more to me these days.  I like control.  I like to be in the driver's seat.  This does not mix well with cancer.  Cancer has too many unknowns.

It is difficult to be a control freak type A person and watch someone you love go through cancer treatments.  The side effects are unpredictable from day to day and there is really little I can do to help.  It is difficult to be a control freak type A person and reconcile where faith must enter in to life.  Where do I end and where do true faith and trust begin?  This brings me to my favorite number.  One.

One mustard seed.  I need the faith of one mustard seed to move mountains.  That's not a lot.  It's more than I have most days but it's not a lot.  I'm working on it.  I'm striving for it.  One risen savior to celebrate this beautiful Easter.  One risen savior who knew what a control freak I would turn out to be and loves me anyway.  One husband picked just for me who understands me better than I do some days.  One beautiful and loving family that lives and laughs in a chaotic house.  One battle to face and one God to carry us through it all. One promise of a hope and a future.

I will continue to live this life one day at a time and find at least one thing to treasure about each day. Today the blessings are numerous;  sunshine , father and son playing baseball, soon to be husband and wife coloring eggs, a great run, new beginnings and the hope and promise of the Easter season.  One great day!