Hope Floats

I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie.  Either way, if I am flipping through the channels and it is on, I stop and watch.  Every time.  There is a line in the movie about giving hope a chance to float up.

We spent today at Johns Hopkins.  Dave was due to start round 3 of the clinical trial.  He had labs and a CT scan done before meeting with one of the doctors.  She did not have good news for us.  The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before.  The words “innumerable tumors” were used in reference to his lungs.  All around a sucker punch to the gut.  Completely unexpected.  On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”.  What this means is that Dave did not start round 3 of treatment today.  Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him.  So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment.  We will let hope float up to take the place of utter disappointment.

After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity.  Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic.  I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment.  I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future.  They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist.  I am excited to have an expert team take a look at my girl.

Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here.  Together I know that we will come up with a plan that will get us back on the right track.

xoxo,

Robyn

Goodbye 2012

I’ve been reflecting back on the past year.  Although we didn’t get the remission that we hoped for, I am grateful that Dave is doing as well as he is.  We’ve witnessed Samantha’s excitement as she first toured and then applied to colleges.  This year also brought us Winston – not much more to say about that!  2012 also brought me a new job that has renewed in me a love of teaching and learning.

I have heard that you should spend New Year’s Day doing the very things that you would like to be doing the rest of the year.  So here a few things I WON’T be doing tomorrow…

laundry

cleaning

stressing about time and money

stressing about health and what-ifs and treatment plans

stressing about Grant’s homework efforts

Here are the things that I plan on doing tomorrow and hopefully throughout 2013…

sleeping soundly

solving the daily crossword

enjoying family time

reading

walking the dogs

laughing

relaxing

Mostly, I am feeling hopeful about what the new year will bring.

Happy New Year!

xoxo

Robyn

Cynthia

“But I know that my God is bigger than all of this, and statistics don’t mean much when you are held in His infinite, unchanging, and mighty loving hand.”

I hijacked this quote from my neighbor friend, Cynthia’s, Caringbridge site.  She is in my thoughts and prayers tonight as she undergoes surgery for recurrent ovarian cancer.  And selfishly, I also take comfort in her words.  I don’t think much of statistics.

xoxo

Robyn

Scan Alert

This is a shout out to our prayer warriors, our “sending good vibes” peeps and our positive thinkers.  Dave has his next scan on Tuesday, September 25th.  Let’s keep up the good work and get great news on Wednesday!

I appreciate all the supportive responses I am reading on the blog, and I just want to reassure everyone that hope is alive and well in our house.  We truly live in a place of hope.  Wandering down the dark alley of “what ifs” would surely keep me from ever sleeping again.  So, we keep optimistic and appreciate all that you are doing from your different corners of the world.

All my love,

Robyn

It’s Where I Live

I pretty much tell everyone that will listen that I am not in denial.  I have read the percentages.  I know the odds are not in our favor.  I get how this all could go down.  But accepting those numbers seems like giving in.  I believe wholeheartedly that Dave will be one of the 10% or 20% or whatever number you want to throw out there.  There is no way he is not going to come out of this just fine.  So is this denial?  Blind optimism?  Hope?  I have no idea.  But it is how I cope and how I choose to focus my thoughts.

Occasionally, something will come along that will attempt to shake my unshakable faith that all is going to turn out exactly how I want it.  Recently, this was in the form of a questionnaire.  Dave signed us up for a “Couples Retreat for Patients with Metastatic Colon Cancer”.  When the information first came in the mail, I tossed it out thinking there was NO WAY Dave would want to attend.  Turns out I was wrong.  We have to answer some questions and bring them along the weekend of October 5th.  There are statements that you have to agree or disagree with such as “I want to make the most of our time….” or “I am uncertain about our future….”  Frankly the discussions that may serve as follow up to these statements scare the crap out of me.  I don’t want to think about any of that.  So maybe I am in denial.  But I couldn’t live anywhere else.

xoxo

Robyn

T. S. Eliot and Me

There have been two prevalent emotions over the last year – stress and hope.  I have become an equal opportunity stresser giving equal anxiety to our deck construction, starting a new job, Sam’s college searches, Dave’s test results, and the US gymnastics team.  What keeps the stress in check is hope.  I am almost always able to redirect my thoughts to something more positive.  Almost always.

I came across a T.S. Eliot quote recently that has become my new mantra “I said to my soul, be still, and wait without hope, For hope would be hope for the wrong thing.”  I will never be without hope, but I love the freedom from hoping for something specific.  After all, there are so many possibilities.

So mark your calendars, Dave’s next scan is next Tuesday (8.14).  Dave and I will be stressing and hoping.  Feel free to join us.

xoxo

Robyn