PERMITTING THE PARADIGM SHIFT

If we begin to get in touch with whatever we feel with some kind of kindness, our protective shells will melt, and we'll find that more areas of our lives are workable.

Pema Chödrön
When Things Fall Apart

Change at its best is something exciting, something hopeful and good, but on the cancer journey change can take on frightening dimensions and challenging obstacles.  Over five years ago when Ernie started his journey we had such hope and as the months changed to years, that hope only grew stronger.  The beast that was cancer was at bay, in the background, something he dealt with to be sure, but something manageable.  He learned to take each day as it came with dignity even when infections came and went and hospitalizations came and went.  In between the hard times we traveled a bit, lived and loved.  

As caregiver, I have come to realize that little by little we have both been involved in a huge paradigm shift.  Life has taken on a new normal, very different from life as we once knew it.  His life has changed much more than mine and remains more limiting, but as his partner on this journey my life has also changed.  Looking back and romanticizing life as it once was defeats today.  Fighting change is a futile exercise because whether we like it or not, change is inevitable with this disease.  

Because of his pill regimen, he must eat at certain times, so social gatherings with friends to eat can become difficult.  Isolation is one of the big changes.  Friends offer help and when we can, we accept that help, but their lives go on (as they should) because our activities are limited now.  Our world has become much smaller. A huge piece of our world involves the medical community with doctors' appointments and medical tests.  Friends care, but sharing all of this information can be exhausting for us and I suspect not that interesting to many people, so our tendency is to keep things close to the vest, which further isolates us from the outside world.

As Ernie begins another leg of this journey, fighting a new found cancer in another part of his body, all of his energy will be focused on this new battle in his war against the beast that is cancer.  I feel the gratitude for today and acceptance of life on life's terms not as I wish it were and move forward.  As caregiver, I am working hard to give permission with kindness to the additional paradigm shift this new battle will involve, hoping to melt away more of this protective shell I have placed around myself.  

EVEN FROM THE CLIFFS OF DESPAIR

"For happiness, one needs security, but joy can spring like a flower even from the cliffs of despair."  Anne Morrow Lindbergh

It has been days since my last post for good reason.  We have been on a medical roller coaster ride again.  Ernie was taken to the heights of hope followed by the depths of despair as information shared with him ranged from ''there is nothing more we can do" after the radiation treatments to the possibility of his being considered for a clinical trial to the devastating news after a recent cat scan that another malignant mass exists that isn't even related to the original cancer.

His case has been an anomaly since the beginning of his cancer journey.  He has lived far beyond all predictions.  Now his body is dealing with two different types of cancers.  The discovery of the second mass eliminated him from consideration as a participant in the clinical trial.

As caregiver, I too have traveled from the heights to the depths emotionally, hoping against all hope that somehow, some way we will have more time and he will have quality of life during that time.  I sense in Ernie a great weariness I can only imagine as he continues to fight this battle with this unseen disease that invades his body.  Yet, even though more tests are required to determine the course of action against this new cancer, he takes a deep breath and is ready to face whatever is ahead.  Watching him and admiring his inner strength, I cannot possibly even consider taking time for that 'pity party'.  How could I?

He recently sent out an e-mail to friends and family and entitled it: DEATH IS EASY.  DYING IS HARD.  That single title speaks volumes.  Through the dying, he is endeavoring to make the most of his living and nothing could be more important for both of us right now.  Recently a hospice nurse shared a true story with me.  One of her patients told her all he wanted to do was to go fishing with his son.  She told him to go and he replied, "What if something should happen to me on the trip?"  She encouraged him to go anyway.  On the way back from the fishing trip, he died in the car and the point of the story is this: he died LIVING.

I believe whatever lies ahead for us that Ernie will die LIVING too.