Standing in a Hammock

"So, how was Houston? What did you learn?"  "How is John?" "How are you holding up?"

Today, three weeks since our trip to MD Anderson Cancer Center in Houston, I would answer these questions somewhat differently than when we first returned, having the advantage of hindsight.  First, Houston was in better shape as a city than we had anticipated, remaining water viewed more from the air than in the area of the Center.  The Center itself as busy, as challenging to navigate as ever.  The sight of so many folks in distress as difficult to handle. 

But for us, the fact that they could not get a sufficient bone marrow sample added stress and uncertainty as we had traveled there specifically to check the progress of John's disease.  What we did learn was that currently there were no clinical trials available to pursue.  And that we would have to wait another week for whatever further information could be retrieved from the sample.  The best advice we received was to resume monthly chemotherapy treatments.

I would have said on the morning we left Houston that nothing much had changed as a result of the trip.  And then, in the airport, waiting for our departure, I heard John tell a friendly stranger that he has an incurable cancer and is not sure he will survive another year.  Something I had never heard him acknowledge before, even at times seemed unable to acknowledge.  It broke my heart - and it was such a relief.

For, it has been very challenging for me to hold the reality of this prognosis without impacting his optimism, his conviction that he could endure this long enough for a cure to be found.  That, at least there might be a clinical trial that would provide a better treatment plan.  After all, he beat cancer before. That optimism, however, has been an obstacle to getting our "ducks in a row" should he or before he loses this battle.

Oddly enough, admitting this is a possibility, even a probability has decreased our stress and anxiety.  Rather than be depressed, it has brought us both a sense of calm relief and purpose.  And subsequently, we have adjusted our expectations and aligned behind a commitment we can manage.  We are focusing on three months at a time and a laundry list of to do's that keeps us grounded, energized and in tandem.  

So, how am I doing?  I told someone recently that I'm learning to ride the waves.  "No," she said, "you're learning to stand in a hammock."

And John, well, he recently reminded me that doctors could be wrong.

When You Need Somebody - Part II

It's been a few days since we've returned from  MD Anderson Cancer Center in Houston.  Although we've made this trip many times, this was especially draining - physically, mentally and emotionally.  Not just because we're older or that this cancer John is fighting is currently incurable, but also because we're more sensitive to the pain and grief around us.  And as this center is the foremost of its kind in the country, perhaps in the world, the presence of pain and grief is profound and palpable. Not only do they deal with the most severe and rarest cases of cancer, but the patients they see are younger and younger.  It's not unusual to meet someone who is caring for a young son or daughter with leukemia or to turn a corner and see a toddler with a bald head, wearing a mask and pulling a tiny chemo caddy.  

But the trip was also draining emotionally because I was so much more sensitive to the small, spontaneous acts of kindness from strangers that I hadn't thought of before now as a form of support. Small moments of generosity and consideration when I least expected it -the two women who came up behind me to push John's wheelchair when they saw me pause, concerned it would get away from me down a ramp.  Women I didn't know, didn't ask.  Or the people who came out of nowhere to hold open the elevator for us or just smile when we passed.  The shuttle drivers who remembered our names, the various service people who exhibited remarkable patience and compassion as we, and others, fumbled for change, or couldn't find what we were looking for.  The nurse practitioner who double checked her answers to reassure us that she had provided the right information (even calling us at 10 p.m. with additional information to allay some of my concerns).  

Most of all, however, it was the conversations we had with other patients and their caregivers as we waited for tests and doctors' appointments. Intimate, honest conversations about diagnosis, prognosis, resources, fears, worries, frustrations.  Conversations too painful, too frightening for many folks, but for those of us in the midst of these challenges a strange relief.  We are not alone.  We are not weak because we are afraid.  We are not demanding when we fight for those we love.  It is not too much to ask for dignity and respect.

And it never ceases to take my breath away when someone who is already fighting for their life or the life of a loved one, someone we've just met offers to include us in their prayers.

So to the list I started in my previous post, I will add these lessons I am learning about support ~

~ Support comes in many different packages.  Physical help can be the easiest to find, especially if you have the financial resources, or can provide it yourself.  Intellectual support is as important, maybe more so for some people. Then there's emotional support, the people who can provide compassion and care, who know how to listen and just be there with and for you, with whom you can cry, but equally with whom you can laugh.  And -

~Support can come from the most unexpected places and in the smallest acts of kindness.