WHEN THE LION ESCAPES THE DEN

"I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear."  Nelson Mandela

  

The angry roar of frustration can spill over to the caregiver.  Often through this process, Ernie has reached those points of frustration and rightfully so considering the stresses and strains not only on his physical body over these past years, but also the emotional strains.  As caregiver, I sometimes forget how hard it is for him, especially when I feel like I’m swimming against the tide.  One of the roles I have taken on during this journey is the role of reminding him to stay hydrated and take the pills prescribed plus monitoring his daily needs.  I’m sure from his vantage point it feels like I’m nagging when all I’m trying to do is to help him.  I am not the enemy and sometimes he needs to be reminded of that fact, and yet, from his perspective I can only imagine how often he feels everything is just coming at him at once, so I guess this is as much about perspective as anything else and sometimes our perspectives are just in conflict with one another.

As caregivers, we wear a multitude of hats and take on many roles, depending on the needs of our loved ones.  Maybe when the lion roars, our role is to hear the roar and understand the frustration behind it instead of bristling, which is often what my first reaction seems to be.  We are afraid for our loved ones and I suspect they are even more afraid sometimes of all the changes that are new and different from life as it once was. 

Sometimes I think it is our job to just let the lion escape the den and roar, realizing that the roar is not really aimed at us at all.

Thankful - by Josh Groban

NEGOTIATING THE TWISTS AND TURNS

Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being.  Each of us owes the deepest thanks to those who have rekindled this inner light."  Dr. Albert Schweitzer


When I think back over the past five years on this cancer journey with Ernie, I am amazed by his ability to withstand all the changes that have occurred from surgeries to hospitalizations to radiation to physical therapy.  Now the journey is taking another twist and another turn with infusion chemotherapy.  

This past week was our first visit for Ernie's chemo infusion.  I couldn't help but notice the number of caregivers sitting in the outer lobby, some knitting, some reading, some involved with their smart phones or i pads, but all engaged in an activity that would fill time until the visit ended.  

We were ushered back into a four space 'pod' with privacy curtains.  Each had an elevated television, an extra chair for a visitor or caregiver and a hospital tray on wheels that moved in front of or away from the large patient's stratalounger chair.  A movable IV stand stood ready for the bags of chemo infusion.  The room had a large window and I noticed a sign on the wall just to the right of the patient chair that read "Laughter 2".  After the nurse came in, I asked her about the sign.   She informed us that the name of the pod was 'laughter' and that all rooms down the hall were named as well.  Feeling a bit confused as we had not thought of any part of this process as something funny, I spent some time during our day to reflect on the name and the concept of naming these rooms.

During the six hours we spent on this first day of infusion, I became a watcher of the people around us.  The lady next to us and the friend who came were busily engaged in conversation and laughter.  The lady across from us seemed to be engaged with her smart phone.  An elderly woman and her son occupied another space.  I had to smile when Ernie's ESPN sports center program on his television seemed to be at battle with the audio of her program - "The Young and the Restless".  We occupied the fourth space in the 'pod'.  Just like a portion of the lyrics in the song "Thankful"(which precedes this blog entry): 'Even with our differences, there is a place we're all connected.  Each of us can find each other's love', for this day our lives intersected, connected by a process to hold cancer at bay or treat it.  

All playing a specific part of the day's drama, visitors from the medical community came and went throughout the day.  Two young pharmacy interns who looked to us to be barely out of their teens ( a perception problem older adults have), explained the possible side effects of the drugs.  Since we are just days before Halloween, I couldn't help but wonder if their primary purpose was to scare us, but of course I realized their visit was protocol for any patient beginning this regimen. 

During the infusion, Ernie slept.  I read and listened to music simultaneously on my ipad.  The next day we spent waiting for and watching for possible side effects and thankfully none came. We will follow this regimen every three weeks for the remainder of Ernie's life.  I've thought about that laughter name since we left and am beginning to understand at a deeper level that if I can laugh at the absurdity of life instead of brooding over it, then I can help Ernie negotiate better through the twists and turns ahead.     

Judy Collins Send in the Clowns

SEND IN THE CLOWNS

 "A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life."  William Arthur Ward

"You can turn painful situations around through laughter. If you can find humor in anything, even poverty, you can survive it."  Bill Cosby

 

There is nothing funny about cancer and yet over my journey with Ernie, there have been times that his humor has brought in the clowns when despair was looming overhead.  We are fortunate to live in this age of technological advances where information is just a mouse click away.  Yesterday, after we returned home from the medical center, I found a lovely gift in my inbox: a virtual circus, complete with a ticket taker, clown dunk and acts under the big top.  What a happy respite that little gift became as I popped balloons on the midway and watched circus acts under the big tent.

Just a little over five years ago, I remember riding to the medical center the day before Ernie's initial surgery with the theme from Rocky ("Eye of the Tiger") blaring from the car radio.  He was ready for the surgery, ready to have the cyst removed, ready to get back to life.  The city zoo is located just blocks from the medical center and he joked with me, telling me to go to the zoo while he was in surgery and buy bright balloons to bring back, so he would know when he woke up that the surgery had been successful.  He said he would know it hadn't been if I was standing beside his bed with black balloons.  After the surgery our daughter and I learned that beneath the cyst were cancerous tumors that had not shown up in prior cat scans because the cyst had hidden them.  I remembered what Ernie had said about the black balloons and that poignant image has never left me.  There were no clowns that day.

Over the years, Ernie's sense of humor in the midst of  medical tests and procedures have pushed away the clouds of despair and lightened his load as well as mine.  I am reminded of an incident a few weeks ago.  I asked him to check to see if some milk in the refrigerator had expired recently.  He looked down at his abdomen and said, "No, it hasn't expired yet.  I'm still here".  We have a two word phrase we have used over the years and  that is ''not today''.  

Yesterday Ernie had another medical procedure.  The night before the procedure he said, "Why don't you just park me on Main Street with a sign around my neck that reads - 'Poke - 50 cents, Prod - $1.00': his way of coping with one of so many procedures he has undergone over the years.  After the check in procedures and endless repetitive questions by the health care personnel before the procedure he asked me if I could just get a big sign and hang it around his neck with some of the information so he could quit answering the same questions over and over.  I guess his mind has been into signs of late.  Verification of his birth date seems to be a common question and I have heard him ask the health care professional how old he is she is often when he is asked for his birth date. 

No, cancer isn't funny, but so often humor can be found in the absurdity of that which is life itself and as long as Ernie is given today to continue the tightrope walk, I can continue to walk it with him.  

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.