Stephanie Joyce Cole
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Cancer Land Chronicles, 14

5/4/2015

6 Comments

 
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The Caregiver's Lament:  of journeys, paths, rivers, tapestries and...kaleidoscopes


I hadn’t seen Joannie in several months, because she and her husband flee from Seattle every winter for warmer climes in Mexico, and then return each spring.  When we ran into each other at the pottery studio and she asked me how I was doing, I told her about Mark’s cancer.

It’s always hard to retell the story of Mark’s diagnosis.  Each time, there’s a bit of reliving the initial shock and pain.

Joannie hugged me and offered the conventional wisdom:  Make sure you take care of yourself.  Her advice for me:  Remember what they tell you when you’re on the airplane.  If you’re taking care of someone else and the oxygen masks descend, put yours on first before assisting another.

I’ve been offered lots of advice, and much of it is sound.  I’m a little tired of hearing about the complexity of life’s journey.  Life, I’m told, is a journey (some sort of modern version of Pilgrim’s Progress, I think), a path (winding through sunny pastures but also dark forests), a river (alas, with rapids and falls), a weaving (made beautiful by both the dark and light threads), and on and on.  At this point in my life, even my great love of metaphor is over-taxed.

The way I see it, life is a kaleidoscope.  You can stare in awe into the tube at the swirled patterns, but the slightest tremor will reshape everything, scramble all the bright and dark pieces and shoot them in different directions.  You can cherish a pattern for a brief moment in time, but then it’s gone, no matter how much you valued it.  It’s just gone, and that arrangement won’t exist again.  

I am taking care of myself, as everyone advises me to do, as best I can.  I know it’s important—if I get sick too, Mark and I are both toast.  But feelings don't track rational thought.  I feel guilty when I’m off at the gym or the pottery studio, uneasy that I’m not taking care of Mark.  I also feel totally irrational guilt because I’m in good health and he’s not.  When I savor a meal or enjoy the warmth of the spring sun on my face when I’m out walking with Rusty, I feel guilty because Mark is denied these simple pleasures.  Makes no logical sense, but there you go.

This last week was very difficult for us.  Mark’s intestinal problems intensified to the point that he was unable to eat for two days.  Every time he tried to eat anything at all, he vomited.  He has lost so much weight that he is almost skeletal, so he has no reserves to draw upon.  I was panicked.  I became a relentless nag:  “Try this chili, this flan will slide down your throat, just swallow a bit of jello.”  Finally, Mark’s doctor prescribed a new and very strong anti-nausea and appetite stimulant medication, and it seems to have worked.  He managed three small meals yesterday, and today he’s feeling stronger.  He and our son Chris headed to the golf course this morning to hit balls on the practice range.  

So, for the moment, the kaleidoscope pattern has shifted again, into a brighter place.  

Thursday is a big day for us, when we find out the results of Mark’s CAT scan.  I asked him what he wanted to do if the CAT scan reveals that the new drugs aren’t working.  He said we’d ask about options and make decisions based on the information.  That makes sense.

Please send your good thoughts our way….


6 Comments
teri
5/4/2015 03:05:49 pm

The kaleidoscope is inspired. You are exactly right. Yes, our thoughts are with you, prayers too.

Reply
Janice
5/4/2015 07:03:16 pm

Love to you both

Reply
Kelle Murphy-Logue
5/5/2015 01:31:23 am

Praying for you. Sending love and good thoughts.

Reply
Colleen
5/5/2015 05:41:39 pm

Wonderful thoughts. I love your writing. My sister Kathleen teaches mindfulness training. Live in the moment. It's really all we have. Love to you all.

Reply
Janna
5/7/2015 07:00:10 am

Life should not be so hard and yet so fragile for Mark or for you. I hope there is some peace in every day.

Reply
Jane
2/20/2016 03:35:42 pm

Thanks for helping me with the aloneness that my husband's diagnosis has created in me. I know several people who have lost someone to pancreatic cancer, but the loss has not been in the recent past like yours was & was only briefly discussed. It has helped me to read about your experiences through this blog, and I like your writing style.

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