Tuesday, January 29, 2013

Adjusting My Sails

 She stood in the storm and
when the wind did not blow her away,
she adjusted her sails.
Elizabeth Edwards
For the last three years, I have been living from month to month and experiencing varying degrees of angst prior to each appointment with my oncologist.  In the first seven months, I experienced worry and fear and even panic in the weeks leading up to the next appointment.  During the stem cell transplant period I had appointments for blood draws, infusions and various other procedures almost every dayFor two and a half months I was living from day to day with many of those days filled with worry and fear.

After transplant and the resulting remission, I became more and more confident as I went to my  monthly appointments.  Yes, I did worry about my blood counts before each visit to my doctor, but it became somewhat routine as my light chain numbers stayed in the normal range.  I was still living month to month, but without as much of the earlier angst.  Being realistic about my diagnosis, I knew that at some point this almost comfortable routine would come to an end and it did.  Relapse is a reality now  but it has not blown me away.

Now that I am relapsing but not in treatment yet, I feel completely in limbo and "adjusting my sails" has filled me with questions. Will my next appointment on February 6 change everything?  Will my lambda light chain rise again?  Will my doctor decide it is time to do something or will we continue watchful waiting?  If treatment is the decision, what will it be and how will I respond to it? Will it work? 

So many questions. . .


  1. THinking of you as you face the next appointment and getting questions answered; knowing and intending there are hopeful signs ahead and you are feeling encouraged after the visit, and this is for the highest and best good of all concerned, so be it and so it is! Whooooooo!

    1. Hi Sandy,
      I am intending there are hopeful signs ahead too! :)
      Carole Leigh

  2. dear carole leigh,

    i love your affirming statement, "i am not blown away". but i know adjusting your sails is not an easy task with so many questions, so many unknowns. i know this post will resonate with so many others as i does with me. take heart, carole leigh, that as you share your story with your honesty and insight into ways to survive "the waiting game", you are helping quell some of the worry and fear many of us are faced with. just connecting, reaching out across the blogoshpere, and inviting others to join in this conversation is an act of compassion that says we are not alone - we're in it together, and we have your back! i hope you can feel yourself embraced in the thoughts, prayers, and hopefulness sent from your readers. to say nothing of the lovely sandy, intending for you!

    love, XO

    karen, TC

    1. Dear Karen,
      It is wonderful that we have this connection across the blogosphere. Sometimes when I re-read what I have written I feel like I sound braver than I am. However, connecting with you and Sandy and others buoys my spirit and reminds me that I do have more courage than I realize. I hope you are doing well.
      Love, xox
      Carole Leigh

  3. Hi Carole, wishing you the very best on your upcoming appt. I too have my monthly check this Friday, Feb 8... so we will chat after our meetings...wishing you good news!!! Thank you for your thoughtful and supportive comments; I quoted you, your insightful wisdom and cited your blog on my updated post :) Take care, think positive, and we will check in! Love and hugs from your Myeloma blog girlfriend Julie