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The Words You Never Want to Hear

Words are a strangely powerful thing.  I am strongly affected by words.  Think of how important it is to hear the words “I love you” on a regular basis.  It is so much a part of our culture that we often say it every morning, every night, and every time we leave the ones worth saying it to.  I personally am glad we say it as much as we do.  Life is short, and love is important.

Now, imagine hearing over and over again that you are going to die.  Imagine hearing at every possible opportunity that a doctor has, “We aren't fighting to cure, but only to elongate your life and keep you comfortable for as long as possible.”  Just imagine it. 

Recently, the doctor said two words that generally would be characterized as bad.  “It’s spreading.” In the cancer world, hearing “it’s spreading” is almost never a good thing.  However, this is a good story.  I promise it ends well. 

Meet Regina.  Regina is a wonderful German woman who has lived all over the world.  She has pancreatic cancer and is celebrating the last of her chemo appointments soon.  Regina saw my mom and me when we were dressed in Hawaiian skirts and leis a few weeks ago.  She crossed our paths but we didn't get the chance to meet her at the time.  She felt quietly inspired to join in and choose joy.  When we finally did meet her, Regina was dressed in a vibrant green tutu with a matching green wig.  It was at that moment that our doctor came out to us and said “It’s spreading.” He was talking about the joy!  The joy is spreading! 

Regina put it this way “We can’t always decide what we go through, but we do have a choice in how we go through it.”

As a person fighting terminal cancer, or in my case the caregiver of a person fighting terminal cancer, there are a few things that you don’t want to hear the doctor say.  In a perfect world, we would never have to worry about those things.  This is not a perfect world, and I guess my belief is that we can only do our best with what we are given.  I believe that we can reclaim what is said and sometimes even change it for the better.

Recently my mom heard some other words that you never want to hear.  “We are running out of options.”  The all-encompassing “we.”  I use it all the time.  “We have chemo.” “We have a doctor’s appointment.” “We are trying a new drug.”  At first, I felt very conscious of it.  I don’t have cancer.  Is it offensive to say “we?”  Wouldn’t it be more accurate for the doctor to say “you are running out of options?” And here’s the thing.  Cancer is all-encompassing.  It effects everyone: family, friends, doctors, and even my coworkers.  Cancer not only turned my mom’s life upside down, but mine too.  It’s not offensive to say “we,” it’s almost necessary.  So the statement stands, “we are running out of options.” 

How can we reclaim that though?  Currently, we are on a break from chemo because my mom's numbers were rising.  No chemo means no dressing up.  Are we “running out of options” there too?  

We don’t want to be!  We want to continue to choose joy and show the world our choice.  I keep going back to my mom's original thought "If my silly little story can inspire others, it makes this just a little less hard."  We want to reclaim those words!  Help us to know how!  Comment below with your ideas!  Speak Life.  Choose Joy.  Live a life abundant.

The Story Behind the Hashtag

What compels a couple of grown women to dress up in wacky costumes and waltz into a hospital like it is nothing?  Well, I will tell you, the story is probably much simpler than you would think. 

It started on a morning just like any other.  I had woken up, showered and gotten ready for my day.  Every morning right before I leave for work, I check on my mom.  I check to make sure that she is still breathing.  And so far every morning she is.  On this particular morning, I looked into her room and noticed that she was awake.  I meandered towards her and sat on the edge of the bed concerned.  She told me she was having trouble breathing and experiencing a lot of chest pains. 

One of the hardest things about being a caregiver is the uncertainty.  Of course there is the given uncertainty of how long she will live.  But in addition to that, there is so much more.  Take this instance.  Here I am, sitting on the edge of my mom’s bed with the problem of chest pains.  Any normal person knows that chest pains aren’t something to take lightly.  But what do these chest pains mean?  Did a part of her lung collapse?  Does she have a blood clot?  Is it just simple heart burn?  Should I make a big deal about it?  Should I call a doctor?  She we call 911?  Should we ignore it and go about our day?  I wish I could say this part gets easier, but it is a constant struggle.

For any other caregivers out there who may be reading my blog, I do not have any suggestion of what is the best way to handle this.  However, I can tell you what I do.  I take a deep breath.  Sometimes five or six.  Then I pray. 

Our story picks up later that day at the hospital.  We had called the doctor, been strongly encouraged to come in and as a result had gone through a bunch of tests.  My mom had been wheeled all over the hospital, me waddling behind with an armful of purses and things needed.  Since we didn’t have a scheduled appointment, we were actually hanging out in the lobby area of the cancer center to hear what information the tests would reveal.  The nurses would occasionally stop by to take vital signs, check her temperature, her pulse, breathing rate, etc.  Every time a nurse came to check anything he or she would ask for my mom’s name and birthdate.  Having been through a slew of tests that morning, my mom had been asked those question at least a dozen times.  Since she was transported from one wing of the building to the next so many times, someone, I can’t honestly remember who, had given her a stack of labels with her information on them.  So that with each new test, she would have the same hospital number and information.  The label included her name and birthday, hospital account number and a bunch of other numbers which I haven’t the faintest idea of what they meant.

Let me do my best to paint a picture.  At this point, my mom doesn’t feel well, has been all over the hospital, had a bunch of tests done, and is waiting to hear what is wrong with her.  She has a fever of over 101 and her blood pressure is 88 over 26.  She was just over it. So, in a moment of sheer defiance, my mom took one of those labels, peeled off the sticker, and stuck it straight on her forehead. 

This was the beginning of “Operation Choose Joy.”  I looked at her with that label on her head and I laughed.  Then every time a nurse or doctor came to check on my mom, they laughed.  They laughed!  So, I joined in.  I grabbed one of her labels and stuck it on my forehead too.  And all of a sudden, this day of stress switched gears.  It stopped being about my mom, and how crappy it was to spend the day in a hospital lobby.  It turned into an opportunity to make other people smile. 

For those of you who need an ending to this story, I will tell it quickly.  It was pneumonia that was causing my mom to have trouble breathing and chest pains.  We spent about a week in the hospital and she had IV antibiotics which got her over that hump.  But the bigger picture is that our “Choose Joy” mindset was birthed. 

Now, every time we have a chemo appointment, we try to think, how can we make the nurses smile?  What can we do to turn this from being about us?  How can we choose joy?  Usually the answer ends up with us in some sort of silly costume with something sugary or full of caffeine to offer.  We did not set out to be internet sensations or find out how many likes we could get on a specific picture or views on a certain video.  We simply want to spread joy.  And as my mom puts it, “If our silly little story can spread a little more joy, and inspire others to not give up, then that makes this all just a little less hard.”  So I want to encourage you to do the same!  Maybe that means something different for you.  We don't all have to walk around wearing a clown nose!  But, how can you choose joy today?  Think about it.  Speak Life, Choose Joy, Live a Life Abundant.