Saturday, June 9, 2012

Metaphor


I come from a long line of sailors.  On my mother's side, my great great great grandfather was a sea captain in the first half of the nineteenth century.  On my father's side, my great grandfather was listed as the only sailor in his company - all the rest being farmers - on his Civil War muster papers from the State of Michigan.  A treasured family heirloom is this photograph of three sailing ships on Lake Michigan. My grandfather had written these words on the back of the picture:


"21st Birthday, July 26, 1902 - On our way to Manistique with 1600 pounds of apples on the Mary L in company with Rambler and Lulu Guy"
My Grandfather



My dad inherited this great love of the sea and it defined  his life.  He spent eight years in the U.S. Navy including WWII. (If the truth be told, he would have made the navy a career if my mother would have been willing to move.  She didn't want her children to be moving frequently and I can appreciate that.)  After the war, he became a commercial salmon fisherman in Washington State and he fished many years in Southeast Alaska.  In his later years, he had a sailboat that he was able to sail by himself until he was 87 years old.  He was never happier than when he was on the water.
  
My Dad


Though I have this nautical history in my family, I have never had that strong connection to the sea and my only sailing experience was with my dad.  Oddly enough and maybe because of my heritage, I have come to view sailing as a metaphor for my multiple myeloma odyssey. 

Throughout my life, I have had the good fortune to have the wind at my back.  You might say I have sailed through life pretty easily . . . until now. I grew up in a loving home with parents who taught me well and prepared me for a productive, happy life.  I was a good student in school and had lots of friends and I participated in many activities.  I went on to graduate from Western Washington University and had a long and successful career in education.  I married my WONDERFUL husband 43 years ago and we have two great children who we are very proud of.  We lived a good and mostly trouble-free life until January of 2010 when I was diagnosed with multiple myeloma.

When that happened, the gentle wind at my back that had been propelling me through life, became a violent storm. This great fury damaged my "ship" but didn't sink it.  Radiation, chemotherapy and an autologous stem cell transplant repaired the damage, but I no longer sense the wind at my back.  I am in the doldrums, like those latitudes in the Atlantic and Pacific Oceans where there is no wind and sailing ships can languish for days and weeks.  I, too, have been languishing.  

I have found it difficult to get motivated and excited about moving on with my new life and I am not sure why.  One thing I do know, I am wasting precious time.  This sense of malaise has been dampening my spirit and I want it to end.  I want to feel the wind at my back again.


Update:  
I wrote the draft for this post over a week ago.  A few days later, I went for a preliminary screening for the Livestrong Exercise and Thrive program at the YMCA and I came away with a renewed spirit.  Was that a hint of the wind at my back I felt?  Yesterday, I made reservations for two Alpha Delta Kappa International Honorary Organization for Women Educators Regional Conferences and will be going to Denver and Boston this summer.  Is that a breeze I am feeling?  

Maybe the lesson for me is to begin living again, inhabiting my days and making plans for the future.  I am determined to make that happen.  I know there will be setbacks, but I can't let that stop me.  When I really feel the wind at my back, I will know I have succeeded.

8 comments:

  1. Hi Carole! New to your blog thanks to Phil's Myeloma Mondays. I was born in Seattle, though I was only three when we left there, so I have no memories. But, how wonderful that you have access to such a renowned facility for treatment, giving you complete confidence in your medical team. Your treatment has been very similar to my husband's, and he too was diagnosed in January of 2010, due to a plasmacytoma. I look forward to following your story and your new "normal", and wish you continued health and happiness!

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    1. Hi Linda,
      Your husband I certainly do have a similar situation. He is the only other person I have heard of being diagnosed with a plasmacytoma. I had none of the other usual symptoms that are described in the literature. I hope your husband is doing well.

      Thank you for your good wishes and I wish the same for you and your husband.

      Best Regards,
      Carole Leigh

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  2. Intending you are setting your sails for a downwind run, and that you are enjoying the new adventures being presented to you for the highest and best good of all concerned, so be it and so it is! Whoooooooo!

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  3. Sandy,
    Thank you for your uplifting and inspiring comment. :)

    Best regards,
    Carole Leigh

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  4. carole,

    the photograph - what a wonderful treasure. it's so beautiful! with your granfathers and your dad being so connected to the sea, the metaphor of sailing seems very appropriate to your journey.

    i am sorry you have felt the malaise dragging you down - but know that many people who suffer serious illness, then go through treatment that is successful have found themselves in the exact same place as you. be gentle and kind to yourself; it may take time for you to transition to be in more still waters after the life-threatening "storm" of myeloma rocked your world. my husband was diagnosed in october of 2009, had a plasmacytoma and suffered a complete fracture of his femur while putting something in our car, on our 42nd wedding anniversary. he had his leg rebuilt - twice! - the first time it completely failed and all the hardware applied became detached because of the regrowth of cells at the site. he had tandem SCTs, the last, 14 months ago. just before christmas this year, i was diagnosed with st IV metastatic breast cancer, then 6 days later, insulin dependent diabetes. i had chemo for 4 months to shrink the tumor, then 10 days ago a lumpectomy, so successful because the surgeon could find no trace of the tumor (!), and will soon start radiation. hugh is in CR, doing very well. the dynamics for both of us, being both a caregiver and a patient has been very smooth, and in many ways very comforting - we both know what the other has gone through - and we can see light at the end of the tunnel. but from time to time, both of us have experienced sadness and loss, even in the face of all that has been accomplished. we sometimes feel insecure not being constantly under the watchful eyes of both of our incredible care teams. we miss seeing the many patients and their families we bonded with in the treatment centers, we miss the close and caring relationships with our many physicians, nurses, volunteers, even the secretaries, schedulers, et. al. our lives became cancer central, even though we've strived to live as normally as possible. now we will soon be on the threshold of finding a new way to live. much of it seems exciting - especially being able to travel, participate more in our kids and grandchildren's lives, and enjoying an active social life. but we know the landscape of our new life will be very different - how could it not be? the thing we've held onto, that comforts us, that excites us, is something we've come to call "life re-invented" - NOT life in the "new normal". since we latched onto that concept, it feels more like an adventure, and less like a constant reference to what ended our life as we knew it, in less than a heartbeat. TWICE. and we've come to realize, with all the mixed feelings about leaving cancer behind, re-invention will take effort and it will take time. some therapists have likened the experience of having cancer as one that is like going from a battlefield in war time, to coming home and suffering post traumatic stress syndrome. and they add that having a "chronic" cancer poses even more challenging adjustments to living outside the cancer arena.

    no one should have to suffer guilt or shame when they feel the let down that is inevitable after intense treatment. i hope that you are finding the understanding and empathy that you so deserve, carole. i truly cannot predict how hugh and i will handle it, but just reading other people's experiences, like you so eloquently and honestly blog about is a great help. i think you are doing all you can, and i wish you good sailing as you make this sometimes difficult, sometimes exciting, and sometimes unpredictable transition. warm hugs, karen sutherland

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    1. Karen,
      Thank you for your beautiful comment. You have expressed perfectly what I have been through and how it feels. I LOVE your idea about "life-reinvention" instead of "new normal." It is much more positive, inspiring and hopeful to think of it that way.

      You and Hugh have been through so much, but you still are able to inspire and set such a fine example. I have often thought about what would happen if Brent were suddenly diagnosed with something catastrophic. How would I cope? He has been my steadfast rock. After reading what you have written, I realize that we would go on and we would get through it just as you have shown. Thank you for sharing your experience. I wish you both good health and the very best that "life reinvention" has to offer.

      Love,
      Carole Leigh

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  5. So good to read that you are taking off for TWO ADK events this summer and both is such great places. Sail on, Carole Leigh - we are wishing you well!

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  6. I wish you were coming along to the conferences!
    Love,
    Carole Leigh

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