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.

THE UNCERTAINTY OF IT ALL

 "Uncertainty is the refuge of hope."  Henri Frederic Amiel

"Medicine is a science of uncertainty and an art of probability."  William Ossler





We have been on an enormous roller coaster ride for the past few weeks, yet one with more lows than highs.  The cancer journey can be like that.  As euphoric as one day may be, so may follow abject misery the next.  I suppose the hardest part is how quickly those ups and downs sneak up. 

Ernie recently underwent five weeks of radiation therapy, but during a follow up appointment after a recent cat scan he discovered that additional tumors were evident and the disease is progressing.  That day our hopes vanished again as we rode down into one of those 'lows'.  I recall the day of the cat scan well because we were both anxious.  While we sat in the waiting room before he was called back for the procedure Ernie said, "I didn't study for the test".  

Unfortunately, there are so many 'tests' in this cancer journey that our loved ones cannot prepare for.  We as caregivers accompany them, sit in the waiting room with other caregivers and wait.  Then we wait again with our loved ones until the results are read and given.  The results are out of our hands entirely, but the ride begins when we hear them.  

After a number of days of waiting until Ernie had his appointment with the primary oncologist, we stayed in that low and anxious place.  Yet after our meeting yesterday with her we left, riding another high.  He fits the criteria for a phase two clinical trial of a new drug.  He signed his name on all the forms and now additional uncertainties loom.  After the evaluation next week, if everything appears to be in order, all data is sent to the drug company and it's out of our hands again.  The study is randomized as they all must be according to FDA regulations and even though he has a one in three chance of being selected, he could be the one in three who is not accepted due to the randomization.  And so, again, we wait with uncertainty, a frequent visitor to our lives.  

Living with uncertainty is an inescapable part of this cancer journey.  It's the nebulous cloud that forms and stays until small rays of probability filter through.  Our loved ones battle the disease while we as caregivers save a seat for them on the roller coaster and ride along.

FRAME IT! NAME IT! CLAIM IT!

“Today is the tomorrow we worried about yesterday.” Ann Brashares

"We don't see things as they are, we see them as we are."  ~Anaïs Nin

Recently we purchased a whimsical print we both loved because every time we looked at it we smiled.  After it arrived, I spent most of one day finding a frame shop and selecting the frame I would use.  Because the colors in the silkscreen are vivid, I chose a simple black frame that wouldn't detract from the piece. 

 Big Texas Sky - Artist George Rodrigue ( www.georgerodrigue.com)

During this five year cancer journey with Ernie, I am also learning how to frame or often reframe each day, and I'm discovering that the frame changes as our journey changes.  Sometimes our days are restful and even whimsical with a bit of humor thrown in while other days are fraught with tension/apprehension, especially when he is involved with medical tests or doctors' appointments.  Yet, even on the more somber days, I can choose to frame those days, name those days and claim those days with a perspective that pulls back the curtains and lets light into the day.  If I feed on the apprehension like a hungry beast, it multiplies until there's too much to consume.  

But perspective is tricky.  Just telling myself to quit feeling a certain way or to quit thinking a certain way doesn't always work.  A change in perspective involves work.  First I have to discover where I am that day.  Then I need to examine the events of the day ahead and formulate a plan that will provide some balance if it is one of those days that might be all consuming.  For example, tomorrow Ernie has to go to the hospital to have some blood drawn.  This will involve loading the scooter on the back of our car, driving to the hospital, checking in, waiting in the lab until his blood can be drawn and then doing everything in reverse.  We have decided after the blood draw we will take in a movie at a neighborhood movie theater that offers lunch while you watch the film.  In that way, the day will include an activity that will provide some balance and enjoyment.  

So many actions we as caregivers take involve deliberate action on our part if we are to thrive and survive this journey with our loved ones.  A song that is an oldie but a goodie popped into my head as I was considering this topic.  

"I Can See Clearly Now the Rain is Gone"

I can see clearly now the rain is gone
I can see all obstacles in my way
Gone are the dark clouds that had me down
It's gonna be a bright bright sunshinin' day
It's gonna be a bright bright sunshinin' day

Oh yes, I can make it now the pain is gone
All of the bad feelings have disappeared
Here is that rainbow I've been praying for
It's gonna be a bright bright sunshinin' day

Look all around, there's nothing but blue skies
Look straight ahead, there's nothing but blue skies

I can see clearly now the rain is gone
I can see all obstacles in my way
Here is that rainbow I've been praying for
It's gonna be a bright bright sunshinin' day
It's gonna be a bright bright sunshinin' day
Real, real,real,real bright bright sunshinin' day
Yeah, hey, it's gonna be a bright bright sun shinin' day
It's gonna be a bright bright sunshinin' day
It's gonna be a bright bright sunshinin' day 

HAULING THE HEAVY LOAD

"There is no coming to consciousness without pain."

Carl Jung

"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand."

Henri Nouwen

 

Our humid Houston weather can feel oppressive.  I recall landing at the airport years ago back from a Las Vegas trip.  As we walked down the jetway, the change in humidity from the arid desert air to the humid Houston air was almost palpable.  I actually felt pressure on my chest with each breath while I adjusted to the change.  As a caregiver, the pall of sadness can be just as oppressive.  We hurt too as we watch each difficult effort our loved one makes and takes.  I don't have mobility issues, but every time I watch Ernie struggle to walk from the car into a restaurant, I hurt for him.  He teases me when I mention my empathy by asking me if I'd like to trade places.  

 

Sadness for me comes in waves, based on the level of his struggles that day.  When he is having a good day emotionally and physically, my sadness is abated for a while, but like a menacing playmate in a game of hide and seek, it's always there ready to jump out and surprise me when I least expect it.  I have prided myself over the years for my ability to maintain stoicism in the face of critical situations and not cry.  Now I find myself tearing up at the slightest provocation. I am learning to cry as a natural release for my own sadness and find when I do, everything feels emotionally cleaner and brighter.  I am learning to give myself permission for that self indulgence when I need it.  

 

My first reaction when I am feeling sad is to separate from everyone and everything, to crawl over in the corner and lick my emotional wounds like an animal separates from the pack when it is injured.  Yet I realize that when I do that, I am isolating myself and increasing the weight of my sadness.

 

I know today that I cannot stay in the sadness any more than I can attend those pity parties.  When I am trapped in my own sad thoughts until I am stuck in a kind of mental loop, I know today that there are a number of options available to me.  I can stand up and move away from my computer and do something physical.  I can leave the house and enjoy lunch with a friend.  I can get lost in a novel.  I can phone a friend.  In other words, I can seek a diversion, any diversion that will bring some balance into my day. 

 

Night sadness is harder.  The crushing sadness that sweeps over me in the middle of the night and seemingly 'just appears without warning' requires different actions.  When that happens, I pray, I send my mind to past experiences that brought joy to my life: our wedding, the birth of our daughter, a silly or happy memory, and I use the deep breathing until I'm able to fall asleep again.  More often than not, the sadness is lifted by morning and the beginning of another day.  

Along with sadness comes acceptance that the situation we are living in and through is sad.  The effects of this disease are sad in their manifestations.  Yet, we do have this day with all of its possibilities, and to the extent I allow others in and allow them to touch my wounds and genuinely be with me, I am able to experience this day to its fullest.

ANGER DANGER

"Anger and intolerance are the enemies of correct understanding."  Mahatma Gandhi

"Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured."  Mark Twain

A friend once said to me, "If you're going to do it, then just do it".  I thought about her comment recently as I was taking time off from this blog.  We took a short car trip for a few days of rest and relaxation, but certainly not for the amount of time I've been away from writing, so some analysis and self talk brought me back.  The trip was soothing and healing in its own way as it provided a change of scenery after weeks of daily radiation treatments for Ernie and trips to the medical center.  

A few days before we left my own actions again reminded me how quickly exhaustion can remove rational thought and replace that thought with emotional reaction instead of measured action.  I struck out at two people dearest to me and literally spewed my acid on them with little regard for their feelings.  Then left with the emotional hangover of my actions, we took off for our little trip.  Now, I am left with the aftermath and decisions to make regarding what measured actions I will take to try and repair any damage I have caused.  

Living under the specter of disease daily, I am able to keep anger at bay on good days if I am rested and have taken time for myself.  It's on those other days when life is harried and demands more of me that I must work harder to not let anger permeate my thoughts and more importantly, my actions.  

As caregiver, my anger is always there because I hate the disease that is constantly changing our lives.  But unless I rein in that anger every day, it poisons all I think and do and hampers what I can do for Ernie and for others.  Anger is a ''me'' thing, a ''pity'' thing and as I said in one of my earlier blogs, it's not a party I need to attend.  Yet somehow my own humanity and frailty can and does get in the way.  That is when the most important thing I can do is to remember that forgiveness of self is equally important.   

I cannot take back my words of last week to the two people who received them.  I cannot fix the damage I caused by my own actions, but I can move forward today with more resolve and knowledge that anger is a dangerous emotion I cannot afford to use, especially against people who love me.  I only hope today that they will love me in spite of myself.  

My vessel must remain free from anger so I can give the level of care needed to enhance our lives.   

 

WAITING TO EXHALE: A CAUTIONARY TALE

"Self-love, my liege, is not so vile a sin
As self-neglecting."  William Shakespeare

Ernie just completed a five week regimen of radiation.  Every day we drove for almost an hour to the medical center where he received his treatment.  When the radiation oncologist initially explained that after this round of treatments there would be a one month break before any further treatments took place, in typical fashion, Ernie put it in his own terms.  "What you're saying is just like microwave cooking.  After I'm through, I'll continue to bake for another month before I'm finished."  So, according to Ernie, he is now 'continuing to bake'.  

Until these treatments ended, I had no idea how much energy - emotional and physical - had been both needed and expended.  Once a week during the treatments, we met with the radiation oncologist, so he could monitor the progress.  After the one month break, Ernie will undergo a cat scan, so an accurate picture of progress can be measured.  


On Monday, he received his last treatment and rang the brass bell in the lobby so everyone would hear that he had finished another milestone in his journey.  Applause followed.  Our daughter took his picture and treated us to lunch afterwards to celebrate.


Then exhaustion broke through and brought me to my knees.  I suppose like holding my breath under water, I just couldn't do it anymore and I crashed.  I have slept and slept and slept since early this week.  Emotions have spilled over and out, sometimes inappropriately.  I have had to admit that I am human and fragile and not superwoman, something that is hard to accept - again.  Yet, reminded of my own humanity, I can learn from this experience and share it with you.


Taking care of yourself as caregiver on a daily basis is the most critically important thing you can do.  Holding on, holding back, striving to be a super person until the dam breaks is the type of self-neglecting that Shakespeare refers to in the quote.  I plan to begin my day by looking over the things I have designated that need to be accomplished and then prioritize instead of trying to do it all every day.  I know this won't be easy for me initially, but I am convinced that if I make this start, I will be able to exhale just a little every day instead of allowing things to build up until I reach a point of complete exhaustion.  

I am a list maker and from now on, the word 'rest' will be an item on my list, whether that means just a block of time when I sit, pause and reflect or a nap.  Until it becomes second nature to me, I will write at the top of my daily list the words "remember to ask for help".  That 'help' could be as simple as calling a friend and just asking that friend to listen  or it might entail asking someone to pick up a few things at the grocery store for you if you are unable to leave your loved one that day.  People who care want to help, but they need us to direct them by letting them know HOW they can be of help.  

Soon I will go back to work.  I am fortunate to work part time and have the ability to schedule my own hours; however, if Ernie's radiation treatment becomes an ongoing activity, I will need to call on friends and neighbors occasionally to drive him to treatment.  Many people have offered to do just that and what a blessing that is!
 

We, as caregivers, are the organizers of our own time and activities.  The demands placed on us are many, but we cannot do everything without paying a price emotionally and physically. Taking care of ourselves allows us to thrive and not merely survive and what better gift can we give the loved one who needs us. 

OUR LOVED ONE REMAINS THE SAME

"In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. "  Albert Schweitzer

"We are not victims of aging, sickness and death. These are part of scenery, not the seer, who is immune to any form of change. This seer is the spirit, the expression of eternal being."   
Deepak Chopra

I believe we are all spirits wrapped in skin, but I also believe that cancer, like an amoral thief, steals from our loved ones until visible signs become hard to ignore.  Cancer steals strength.  Ernie said the other day that he regretted that he was unable to do certain things he used to be able to do because he now lacks the strength.  However, he has no lack of mental strength or determination.  That he has demonstrated over and over during this long journey.  

Cancer has stolen energy and stamina.  Most afternoons he takes a nap (and I often join him) and the naps rejuvenate, so there is a solution to the energy dilemma.  Cancer has caused weight loss over time, but with a careful attention to diet, he is able to monitor and maintain weight: another solution.  

This journey is one of incredible highs and gut wrenching lows, but although cancer attempts to steal joy when times are low, Ernie resists through humor, teaching the rest of us how life's battles can be won.  Cancer can isolate its victims and caregivers as well, yet true friends have continued to include us in activities to keep our world from becoming too limited. 

I would be lying if I said this is easy.  Life has changed for him.  Life has changed for me.  Adjustments have had to be made and continue to be made to accommodate each change.  But if I remember that he is the same spirit wrapped in skin I have always loved and will always love, whatever lies ahead is possible to endure.  

Whether our loved one is mother, father, daughter, son, child, husband, wife or friend, Josh Grobin's song "You're Still You" says it better than I ever could.  

 

BACK TO THE BLIND MEN AND THE ELEPHANT

.

As a caregiver, education and query are two of the most important tools I possess. Living in an age where information is instantly available, the better informed I am about Ernie's particular cancer, the better able I am and will continue to be able to ask the right questions. As the patient, Ernie has learned to read his own numbers when he reads a copy of his blood work.  He knows what his numbers should be from his INR numbers, which indicate his blood clotting factors since he takes a blood thinner to his kidney function numbers.  He is capable of reviewing his numbers, so he can ask intelligent questions during doctors' visits.  Just as Ernie has become a student of his own care, I have also researched and studied information, so I can determine additional questions.

One particular instance comes to mind that occurred during one of his hospital stays.  Two bags were hanging on the IV stand.  Ernie asked the nurse about the content of the bags.  She informed him that one bag contained saline solution to help hydrate him and the other a diuretic.  Because he knew that diuretics were used to remove fluid from the body, he questioned why he was receiving one bag to infuse fluid and another to remove it.  The doctor was consulted and the diuretic was immediately removed.  We often wonder how long it would have taken the physician to identify the situation.  

The professionals in the health care industry from the doctors to the nurses are all working for the common good of patients; however, these people are human beings and capable of errors.  Each body system is different and the patient knows his body better than anyone else. As caregiver, it is my job to listen to Ernie and assist in relaying that information to his doctors when he either isn't feeling well or in some cases when he is very sick, unable to communicate that information himself.  I am the constant in his life - the person who is with him most of the time.  The health professionals only see him for brief periods of time.  Constant vigilance becomes necessary to insure quality overall care.  

I have taken the liberty of inserting the parable I referenced in an earlier blog "The Blind Man and the Elephant" to punctuate the concept that when many people are involved in the care of one person, each one has a very distinct perspective and may not necessarily see the whole picture.

"ELEPHANT AND THE BLIND MEN

Once upon a time, there lived six blind men in a village. One day the villagers told them, "Hey, there is an elephant in the village today."
They had no idea what an elephant is. They decided, "Even though we would not be able to see it, let us go and feel it anyway." All of them went where the elephant was. Everyone of them touched the elephant.








"Hey, the elephant is a pillar," said the first man who touched his leg.
"Oh, no! it is like a rope," said the second man who touched the tail.
"Oh, no! it is like a thick branch of a tree," said the third man who touched the trunk of the elephant.
"It is like a big hand fan" said the fourth man who touched the ear of the elephant.
"It is like a huge wall," said the fifth man who touched the belly of the elephant.
"It is like a solid pipe," Said the sixth man who touched the tusk of the elephant.
They began to argue about the elephant and everyone of them insisted that he was right. It looked like they were getting agitated. A wise man was passing by and he saw this. He stopped and asked them, "What is the matter?" They said, "We cannot agree to what the elephant is like." Each one of them told what he thought the elephant was like. The wise man calmly explained to them, "All of you are right. The reason every one of you is telling it differently because each one of you touched the different part of the elephant. So, actually the elephant has all those features what you all said."
"Oh!" everyone said. There was no more fight. They felt happy that they were all right.
The moral of the story is that there may be some truth to what someone says. Sometimes we can see that truth and sometimes not because they may have different perspective which we may not agree too. So, rather than arguing like the blind men, we should say, "Maybe you have your reasons." This way we don’t get in arguments."

THE BIGGEST ELEPHANT IN THE ROOM

"We already live a very long time for mammals, getting three times as many heartbeats as a mouse or elephant. It never seems enough though, does it?"   David Brin




Since Ernie's diagnosis, forcing myself to look at Ernie's mortality as well as my own has not been easy.  My earliest recollections of my fear of death came from the first prayer I remember memorizing and saying repeatedly at night at a very young age.  "Now I lay me down to sleep.  I pray the Lord my soul to keep.  If I should die before I wake, I pray the Lord my soul to take."  What a scary prayer for little child!  In my young mind, death appeared to be something that would come and get me in the night like the bogey man, so I just didn't think about it at all: my very first experience with denial.  Had I grown up on a farm around animals and watched the life cycle unfold naturally rather than in the city, I might have viewed death differently. 

 A huge disparity existed inside me between my perception of death and the reality of death, so faced with Ernie's initial diagnosis, I took time working through the understanding of this natural process until I could distinguish fact from fiction in my own mind.  Now when Ernie refers his own death he references it as ''taking a trip'' and I know and understand his meaning.  He will say "when I go on my trip" or "after I go on my trip" when he shares specific instructions with me.

Several years ago at his suggestion I bought a spiral notebook and began taking notes about insurance policies, people who need to be contacted, banking information, account numbers of policies and even quarterly bills that arrive.  In other words, a notebook full of information I will need when many responsibilities become solely my own.  We have had several ''meetings'' in his office to discuss changes as they occur since his initial diagnosis.  This is one way he maintains his role as my constant teacher.  

The irony behind all of our planning lies in the fact that not one of us can know what tomorrow may bring.  He may leave this earth before I do.  He may not.  But in the meantime, we will live in this day and enjoy the journey.

EXPECT THE UNEXPECTED

"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


"Humor can alter any situation and help us cope at the very instant we are laughing."  
Allen Klein

What began as a relatively normal evening Saturday night erupted into something different entirely.  Ernie walked into the kitchen to get some jello I had made and removed the bowl from the refrigerator.  I was on the couch in front of the television and the next thing I heard was a loud crash and Ernie hollering.   He had either tripped or lost his balance, but he was on the floor, pieces of broken dish and globs of jello all around him.  He cut his hand in the fall and since the jello was red, it was difficult to determine if the liquid on the top of his hand was jello or blood at first.  We determined the cut wasn't deep or severe.  After Ernie caught his breath, he told me he was alright and didn't think he had broken anything, but because he was flat on the floor, I was unable to pick him up, so I called one of our neighbors who came over immediately, but he was unable to lift him from the floor either, so I called 911 and an ambulance arrived with three technicians who are trained to handle instances like this.  After a cursory exam, they lifted Ernie to his feet and onto a stool.   One of the emergency medical attendants asked him if he had any physical problems to which he replied with a smile on his face "Where do you want me to start and how much time do you have?"  Because his blood pressure was low, they wanted to take him to the hospital for observation, but since he had just been released from the hospital two days ago, he declined their offer and I understood as did they.  Several hours later after I had swept up all the broken pieces of pottery and mopped up the jello, I felt gratitude wash over me, thankful that Ernie hadn't suffered any severe injuries or broken any bones.

Today, his ribs are sore, but other than that, his humor is still intact and all seems right with the world again.  Had either of us guessed at what might have happened as the result of a simple act, we never could have guessed what did happen.  This accident might have happened to anyone, but because Ernie is a cancer and heart patient, it took on additional dimensions.  

It seems to me as he travels this journey that life just bumps into itself sometimes, causing difficulties upon difficulties and I can only imagine how frustrating it must be for him.  His  wonderful sense of humor just keeps those of us who are loving him and helping him laughing.  Last night as the emergency workers were rolling the empty gurney out the back door, he asked them if they could turn the lights and siren on as they left the driveway just to give the neighbors a thrill.  Even in the midst of crisis, he helps the rest of us find the humor.

BUTCHER, BAKER AND CANDLESTICK MAKER ALL ROLLED UP INTO ONE

"The best way to find yourself is to lose yourself in the service of others."  Mahatma Gandhi

I spent most of my career as a classroom teacher and often wondered if my students honestly believed I lived in my classroom and just popped up from behind my desk every morning based on their questions and expectations. Teachers assume the roles of educator, counselor, substitute parent and disciplinarian to name only a few.  As caregiver, I find parallels to the same feelings I once had as a teacher with the variety of roles I play today.  I am health care coordinator, dietitian, appointment coordinator, research analyst, nurse and primary support person.  A dear friend recently said, "You will never be as important to anyone in your entire life as you are right now" and I believe she is right.  Being a caregiver is an awesome responsibility and opportunity despite the multitude of roles associated with the job.

As health care coordinator, it is my job to keep up with doctors' appointments and to speak up during those appointments if Ernie isn't sharing the whole truth with them regarding his condition at the time even though it may be an unpopular stance to take.  I understand physicians need as much information as they can gather to make decisions regarding my husband's treatment and care.  It is my job to pay close attention to his nutrition and encourage him to eat foods that will serve his body well.  We have had the privilege of working with a dietitian recently and have taken her suggestions in preparing the right foods.  

I have learned that with the body system, when one thing is out of kilter, other things follow.  I realize that this is not exactly an astute observation, only a logical one, but in the course of every day living, I usually don't contemplate the workings of the body system.  I take it for granted and assume it will simply work as it is designed to work.  With cancer patients, many  medications can cause diarrhea.  Diarrhea can cause dehydration and that condition can precipitate other conditions.  For example, fluid intake is important to my husband's chemo pill regimen, but with fluid intake comes the necessity to urinate and since he suffers from numbness in his feet, getting up and down isn't always easy.  

As caregiver, I need to constantly remind myself that the body system is complex and empathize with him as he endeavors to follow doctors' orders.  Also, because I am overseeing his care and he has several specialists who seldom if ever communicate with one another, it is my responsibility to see the big picture and evaluate his care overall.  Ernie has excellent physicians overseeing his care, but much like the theme of the ancient parable "The Blind Man and The Elephant", each specialist is seeing only his particular part and may not be considering his entire system. 

As caregivers, our roles may be varied, but our purpose is the same: to help our loved one as he or she travels this path which, for some of you, may be a new journey and for others a continuing one.  I will try to share with you from time to time various websites I have found that have excellent and very specific information for caregivers, so you will be informed and can make intelligent decisions.  A recent website I discovered is: http://www.practicalcaregiverguides.com/cancer-caregiving-guide   

THINGS THAT GO BUMP IN THE NIGHT OR DAY

"Courage is resistance to fear, mastery of fear, not absence of fear. "   Mark Twain


"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot."  Eleanor Roosevelt

Since Ernie's cancer journey began almost five years ago, fear has been present to a lesser or greater degree, depending on the day or for me at least - the night.  We have shared our fears with each other, but some fears remain unspoken.  

During his recent stay in the hospital due to dehydration and infection, old familiar fears came crashing through again, and most of them revolved around the unknown.  Since cancer patients have a compromised immune system, Ernie understands the danger of infection and has been effected by infections repeatedly, but this time the symptom was dehydration and it took a few days to discover infection as the underlying cause.  I share this specific information to demonstrate how quickly fear can invade thought with thousands of 'what if' questions until what begins as a small fear becomes enormous and all pervasive.  

During Ernie's illness, my mind often performs at warp speed after I go to bed at night.  I have learned a few techniques to turn it off or at least dial it down, so I can relax and then sleep.  I have a mantra I say over and over which actually are the beginning words of the serenity prayer.  I say ''God, grant me the serenity to accept" and stop there.  I repeat that mantra until I usually fall asleep.  It is a good reminder to stay in acceptance mode no matter what the situation may be at that time.  Another technique that usually works is deep breathing, inhaling to the count of 11 and exhaling to the count of 11, which forces the breathing to slow down.  

Fear paralyzes and debilitates.  All action and forward motion stop when I am afraid, so I cannot be of help to Ernie because  I am so entangled by fearful thoughts.  Knowing that fear is a part of this journey, if I can recognize times I am feeling the most fearful and work towards finding solutions to those fears by looking those fears squarely in the face, then today is brighter and hope has a chance to take precedence.

 

"C" IS FOR CANCER

 "Be like the bird that, passing on her flight awhile on boughs too slight, feels them give way beneath her, and yet sings, knowing that she hath wings."  ~Victor Hugo

Cancer defined is uncontrolled growth of abnormal cells in the body and often just like snowfall in the night, it arrives silently and undetected until symptoms occur.  A close friend who lived for years in Boulder, Colorado described snow as 'sneaky' and so is cancer.  

The very word cancer for me and I suspect for others elicits enormous fear because of personal experiences with how cancer has stolen people I have loved and in sharing Ernie's initial diagnosis, often I endured listening to gruesome tales of suffering and death that well meaning friends felt compelled to share with me.  "I had an uncle once who" or "my mother" or "my father" and on and on until I dreaded sharing the news at all.  I'm certain not one person meant to dive to the depths of negativity.  They were only reacting to the news by traveling immediately to their personal experiences with cancer - the big "C".  

Cancer is a huge umbrella covering so many types and forms as these abnormal cells can invade any part of body, so comparing skin cancer to brain cancer is like comparing apples to oranges.  I found the immediate missing link when I shared Ernie's diagnosis was hope.  Yet, over the years I have not only experienced hope again and again, but I have seen specific evidence in cancer patients I have met.

Since we live in Houston, Ernie and I spent a day at MD Anderson Cancer center one day for blood work and a consultation.  This cancer hospital, which is world renown, resembles a small city.  Seated in a waiting room with at least a hundred other people that day, Ernie commented that we would be there for hours, but at exactly his appointed time, he was ushered in for the blood draw.  Seated across from us while we were waiting was a beautiful young woman whose smile radiated and touched everyone.  Her eyes, a striking deep blue, glittered above a wide smile.  She wore no cap on her bald head.  She just kept smiling and smiling.  I will  never forget her.  Another cancer patient at the radiation center who has treatment before my husband bursts through the door every morning with such enthusiasm and joy it's contagious.  She takes a seat at the puzzle table with others who are working on it and instantly engages them in a lively conversation.  She wears no hat or cap and has no hair, but her joy infuses everyone in the room. The message that both of these women shouted without saying a word changed 'victim' to 'surviving human being'.  I am convinced that hope is the common denominator.  A neighbor of mine and a cancer survivor once said, "I am still me.  I am not my disease". 

My father once shared his observation after he was diagnosed.  He said he noticed that many people quit touching him as if what he had was contagious.  I made a point after that visit to kiss him on the lips or cheek every time I left him.  What I learned from his experience was how threatening cancer can be to others because I believe it reminds them of their own mortality and really has little to do with the individual who has the cancer.  I think there is also a similar connection with others who feel the need to share their grim stories of negativity when cancer is even mentioned.  They are voicing their own fear of mortality and cloaking it in a story about losing a loved one.  Today when someone begins to share another grim cancer story, I politely disengage as quickly as I can.


Experience has taught me and is teaching me to continually remember that this is Ernie's journey and it is uniquely his own and entirely different from any other journey past or present that anyone else is traveling.  As caregiver, I marvel at his hopefulness and must admit I've caught it too.  He is still my greatest teacher. 

CHANGE AND THE NEW NORMAL

 


The bamboo that bends is stronger than the oak that resists.  ~Japanese Proverb


I have never given much thought to change.  Like many things, I took change for granted as inevitable until it effected me personally.  Years ago, I listened to a radio station program that was suddenly taken off the air for no apparent reason.  When it disappeared, I wrote a scathing letter to the radio station that was picked up by a local television station as part of a story that aired on the news.  Of course my letter did nothing to bring the program back any more than railing against the universe will cause my husband's cancer to disappear.  

After Ernie's initial diagnosis, we both began to notice slight physical changes that could be attributed to the cancer and the chemo drug he was taking orally.  He developed numbness in his feet and had mobility issues as a result.  He bought a scooter and had a lift installed on the back of our Yukon.   He tired more easily, so naps became important.  As issues arose, he discovered solutions to remedy them.   His ability to meet the challenges and changes that occurred taught me and continues to teach me to do the same.  

With changes, we are learning to adjust to this 'new normal'.  Life certainly is not as it once was and will never be as it was again, but the very act of being alive means change and if we bend with it, we will both be stronger.

PLANNING AHEAD: A POINT OF FRUSTRATION

"Life happens when you're busy making other plans."  John Lennon
"The best laid plans of mice and men often go awry." John Steinbeck

I found it interesting that two of my favorite famous people both addressed the issue of planning.  Growing up and well into adulthood, one of the nicknames that followed me was ''Patty Planner".  I suppose I needed the security of knowing what was going to happen at some point in the future, never realizing how tenuous the act of planning can be in reality.  Most times my plans became great expectations and when those expectations didn't occur just as I had them mapped out, I felt devastated by the results.  Of course, it would be just as ridiculous not the plan at all and ad lib life totally, but planning ahead as I once did ranks alongside a grand production of the Theater of the Absurd.  

It has now been several days since I first started this post and no truer words were ever written. Ernie experienced severe dehydration, his radiation therapy was halted for now and he is in the hospital with IV hydration.  These were not the plans for this week, but they are now the plans for this week and so life continues.  

As caregiver, I have just shifted and tweaked my reality to accommodate daily drives to the med center with hope that 'this too shall pass' as so many other episodes have over the past five years.  The root cause has been determined as an infection, so there is a solution.  

I have learned through experience to be prepared to accept changes on a daily basis if needs arise and not allow frustration and anger to enter into the day.  If I remember to stay in the day and in the moment, when changes occur, I seem to be able to accept them more easily.  At least that has been my experience.