March 8, 2006

 

 

When both my oncologists entered the examining room, my soul sank, wedged between hope and fear.  After handshakes, greetings, and seating, Dr. Jagasia began.  "I'm afraid we have bad news.  You do not qualify for the clinical trials in Indianapolis."

 My mind was spinning.  We had already made arrangements to leave in 5 days, the paper work had been filled out, an appointment was scheduled.  "Why?"  What changed?

 Dr. Jagasia explained that my multiple myeloma is rare; it has not relapsed in the bone marrow (which is a result of the donors marrow doing its job), but in the bone itself.  Therefore, no measurable proteins are detectable in the blood or marrow which makes it impossible to track the effectiveness of the Revlimid.  And, of course, the trial is meant to measure the drug's effectiveness.  However, the FDA is supposed to approve Revlimid by June 30^th and Dr. Jagasia assured me that the day it is available, he will prescribe the pills for me. 

 "So," he continued, "until then, we have some options."  That was good news.  As long as there are options, there is hope.  "You can begin chemotherapy immediately to stop the progression of the myeloma."  Chemo.  My mind wandered off and I didn't hear all the details of the next option, which also included chemotherapy but was seemingly second best.  "Option three," he said, "is too severe and I doubt that you could survive it."  Well, that left option one.  Or did it?

 "What if I do nothing?" I asked through tears.

 "Then your disease will quickly progress."  It's that simple. 

 The doctors rose to give me and Jim time and privacy.  "No, stay," I said.  "Let's decide now." 

 I looked at Jim and said, "I want to do the chemo as soon as possible."  He nodded his agreement.

 "Good," the doctors said.  "We'll have a PICC line inserted Monday morning, followed by the first round of chemo." 

 So, last Thursday, in only minutes, life's plans changed again.  No trip to Indianapolis but a journey back to the chemo I received after my initial diagnosis.  Monday morning, after the PICC line was inserted in my right elbow, a dose of Doxil and a dose of Velcade were infused for almost two hours.  This procedure will be repeated in 21-day cycles, for a total of 8 cycles.  Day 1: I begin with Doxil and Velcade.  On days 4, 8, and 11, I receive only Velcade.  The 12^th day is the first of a ten-day break before it all begins again.   Somewhere in this "starting all over" plan, the doctors hope to add Revlimid, to further knock down the myeloma, whether results are measurable or not.  They are assured it will work for me.

 What then to expect as side effects?  Who knows this time around?  I probably will lose my curly hair!  I'm going to make Jim take a lot of pictures in the next few weeks as proof I once had curls.  It will be my luck that my hair will fall out then grow in straight and gray! 

 As in our usual tradition, a group of friends gathered to watch the Academy Awards show last Sunday night.  Best Actress Reese Witherspoon quoted June Carter Cash as saying, "I'm just trying to matter."  Since the doctors talked to me and Jim about quality of life versus quantity, I've been wondering about what really matters.  Have I mattered?  To whom?  Do I matter now?  Why?  If my life is quickly fading, do I have time to do something important, something that matters?  Or, is it what we do, at all?  Is it who we are that matters? 

 I've been fortunate to accomplish a lot of goals in my life, for which I am grateful.  The "doing" stuff has been rewarding.  But I hope and ache for the truth that my life matters to my husband, to my sons, to my friends.  Not that I did anything special, but that my life's significance included grace and kindness and fun and faithfulness. And that to some degree, I am able to reflect the image of God when it matters.

 Thanks for your prayers.

 Janice

 

"All material, unless otherwise noted, are owned and copyrighted by Janice Chaffee and James Chaffee, © 2004, 2005, 2006. Permission is granted to forward e-mails, or print for personal use only. No portion of these updates may be quoted in part or whole in any published material or on any internet site without authorization from authors.”