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.