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. . .

Wednesday, January 16, 2013

Fading Sunrise

The beautiful sunrise of a hopeful new year is already on the wane.   Glorious colors and glimmering light have begun to fade to gray and it is only January 16.  After nearly two years of remission, myeloma is edging back into my reality as my lambda light chain continues to rise.  I am relapsing.

That is the bad news. The better news is my bone marrow biopsy and CT scan of a few weeks ago were fine and the myeloma activity is minimal at this point.  My oncologist and three of his colleagues recommend watchful waiting for now. He knows that I am feeling well and that is an important consideration in the decision to start treatment. My doctor did say he was prepared to start me on a low dose of Revlimid if I was upset and wanted treatment, but his preference was to wait a bit.  I trust my doctor’s judgment and I am in complete agreement. Since I see my doctor every month, I will be closely monitored.

Even though I know relapse is inevitable it is, obviously, difficult to think of it actually happening.  In my imagination I had put it somewhere far off into the future. Relapsing was a vague vision and if I didn't think about it too much, it seemed like it just might go away.  

When the time comes to begin treatment, it is encouraging to know that there are options that could lead to a postive outcome and it is comforting to know that this myeloma can be "slapped down" again!  

After my initial disappointment and sadness, I think I have regained my positive attitude for the most part. I can still appreciate the small moments that fill the soul. Yesterday, it was a frosty, cold, clear day as I was driving along a highway where right next to the lane, on the guardrail, was a large and splendid hawk.  I often see hawks along that stretch of road but never so close to the traffic.  As I passed by, he gracefully took flight and he was magnificent. 

Closer to home, I had another moment to savor. Here is my blogging assistant who had just awakened from a nice warm nap on my laptop:

 Naughty Aislinn

Thursday, January 3, 2013


  The grand show is eternal.  It is always sunrise somewhere: the dew is never dried all at once; a shower is forever falling; vapor is ever rising.  Eternal sunrise, eternal dawn and gloaming, on sea and continents and islands, each in its turn as the round earth rolls.
                                                                                  John Muir 

Throughout my life I have always loved sunrise and considered it the most inspiring part of the day.  Even as a teenager in high school, I used to get up early enough to watch the sunrise from our living room window. There was a heater right near where I sat and it kept me warm and toasty as I awaited the first vestiges of color and light.  Some days, it would be overcast and rainy and the beautiful show was hidden from view.  It didn't matter, though, because I knew the grand show is eternal and the sunrise was there even if I couldn't see it and each day I would have a new chance to see the splendor of sunrise.  On those  days when I was graced with a glimpse of the rising sun and surrounding beauty, I felt happy and at peace.  I remember thinking that as the colors of sunrise intensified it was like a crescendo in a symphony building to a climax and then ebbing away.  For me, sunrise symbolized a fresh start and a day full of possibilities.

 At sunrise everything is luminous 
                          but not clear.                                              
                                                  Norman Maclean

The beginning of each new year is much like a sunrise. It is just the early hours of 2013 and the light and color are only starting to appear.  As with every sunrise and a new year, I am filled with hope for the days to come and while a new beginning is luminous with what may be, the future is never clear.

After being diagnosed with multiple myeloma, I have approached each new year with hope tempered by trepidation.  Soon after diagnosis, I was told that the average life expectancy was five years, but with my plasma cell pathology it could be less.  It is now three years later and I am feeling well and, hopefully, still in remission.  The shadow of multiple myeloma is always lurking and my lambda light chain is a cause for concern right now. This has not dampened my spirit because I feel that hope is much stronger than trepidation and for me each sunrise and each new year brings hope.

There was never a night or a problem that could
defeat sunrise or hope.
                                                    Bern Williams