Optimism Required

Last night I heard the frogs singing in a nearby wetland for the first time this year.  Slumbering frogs awakening into song portending spring is one of my favorite sounds.  When I hear them, I can't help but be reminded that spring is near and know that it is a time of rebirth and and a time for optimism.  

As 2012 ended, I was looking forward to the new year with hope that good things would happen in 2013. So far, I have had to resume treatment because of my rising lambda light chains, I have had another cold and cough, and just last Thursday I woke up with shingles!  All of this sounds worse than it has been.  My cold kept me down and at home, but considering my weak immune system, I think I recovered rather quickly.  When the shingles made their ugly debut, I called my oncologist right away and he prescribed an aggressive regimen of acyclovir and it seems to be working.  I haven't had a lot of pain and I am thankful for that knowing how bad shingles can be.  

My last blood work showed that the lambda light chains had increased by nearly 22 points.  Before that, they were rising about10 or 11 points a month.  When I saw the latest results, it was upsetting and even a little scary.  I have to keep in mind I had only two low dose injections of Velcade prior to that blood work. I have now had three injections with a fourth one scheduled for this week - if the shingles don't get in the way.  At my last appointment, my doctor reassured me that we are treating a miniscule amount of myeloma.  We hadn't seen the latest light chain results at that time, so I need to remember that a 22 point increase of a miniscule amount should be kept in proper perspective.

The year 2013 hasn't had an auspicious beginning, but there is a lot of this year left and I am optimistic that things will get better.  After all, I heard the frogs singing.
 

In honor of St. Patrick's Day

This is the centerpiece for our 

 dinner table.  

My New Best Friend ...

BORTEZOMIB!   This new best friend is actually an old friend that I haven't needed in my life for the last 16 months.  Well, I need it now.  I will be having low dose subcutaneous injections of Velcade (the more familiar and friendly name for this drug) every other week.  My husband asked my oncologist how many cycles there would be and he said, "Until the lambda light chain is back in the normal range."   Hopefully, Velcade will work for me like it did in the past.  If not, there is always Revlimid.

My last blood work showed that the lambda light chain numbers had climbed again, the ratio between kappa and lambda is dropping and the  Beta-2-Microglobulin, Serum has continued to rise. These markers are going in the wrong direction and it is upsetting.

Being back in treatment has been a difficult transition for me.  My whole mindset and emotional state are trying to adjust to this new reality of multiple myeloma back on the attack.  I was never completely comfortable while I was in remission, knowing that it was temporary.  However, I had hoped that "temporary" would last a long time and I was able to keep a relatively positive attitude.  Now, I am beset with fear and uncertainty about the chances of dominating this disease again.The one positive note in all of this is my oncologist said the amount of myeloma activity is still small, so I am hopeful that Velcade will be able to overpower it and beat it back into submission.   

When one is battling multiple myeloma or any aggressive disease, a fierce attitude is probably a good thing to have. To that end, I think I should be calling Velcade by its more ferocious sounding name: Bortezimib.

Though she be but little, she is fierce!

William Shakespeare 
 

My Lab Work

Component	Standard Range	11/29/12	1/3/13	1/31/13
Kappa Lght Chn, Free	3.3-8.0 mg/L	9.15	7.83	8.25
Lambda Lght Chn, Free	5.7-26.3 mg/L	42.64	51.37	62.64
Kappa/Lambda,Free	0.26-1.65 ratio	0.21	0.15	0.13

Component	Standard Range	4/15/10	7/5/12	10/26/12	1/31/13
Beta-2-Microglobulin, Serum	< OR=2.51	2.25	2.60	2.81	3.03

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 day.  For 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. . .

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

 

Sunrise

  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 

HAPPY NEW YEAR!  MAY 2013 BE A YEAR OF  

HEALING, GOOD HEALTH AND HAPPINESS.

Two Years!

On December 29, it will be two years since I was in the University of Washington Medical Center Hospital having my stem cells transplanted.  It is such a vivid memory that it seems impossible that nearly two years have passed. 

When I was released from the Seattle Cancer Care Alliance at the conclusion of the two and a half month transplant process, I had an exit conference with the attending doctor.  It was a somewhat disheartening consultation because of this part of the final report:

She does have a history of translocation 14;16, monosomy 13 and 17 on cytogenetics of myeloma cells...The problem is with high risk cytogenetics, patients do not tend to have very long durable remissions after autologous transplant, usually it is only about nine months to a year on  average and then their disease comes back...therefore, it is reasonable to consider maintenance therapy.

Nine months to a year?  I knew that was an average and that it was based on history, but I felt quite discouraged at the time.  However, as I continued to recover and improve, I thought less and less about this bleak possibility. I did go on to have maintenance therapy using Velcade for six months and it was successful.   

Now, it is two years later and I am still in remission with just that pesky lambda light chain beginning to misbehave.  Even with my high risk cytogenetics, I am on the long side of the average.  I'll take it!

Lily and Her Christmas Tree

 

The Results Are In

The last few weeks have involved waiting for results. As I noted in my last post, my lambda light chain has trended up out of the normal range of 5.7 - 26.3:

 9/24/12  -  20.61
10/26/12 -  27.57  (H)
11/05/12 -  33.62  (H)
11/29/12 -  42.64  (H) 

On November 19, I had a bone marrow biopsy and then had a long wait until November 29 to get the results.  For most of the wait I was fine. But as the 29th drew near, my stress level went up and I was ready for the waiting to be over.  What a relief it was when my oncologist reported the results.  My bone marrow was fine with less than 1% plasma cells.  In fact, it was almost the same as it was a year and a half ago three months after transplant.  

Next, my oncologist ordered another blood test and a complete CT scan to rule out the possibility of another plasmacytoma forming. I was able to have the scan the next day and then the "waiting for results" limbo began again.  I don't know why I was even more stressed about the CT scan but I was.  On December 6, I had another appointment with my oncologist to get the CT results.  It is a good thing I love my doctor since I see him so often!  Sometimes, he gets behind on the schedule because he never hurries his patients and takes so much time with each one so the wait can be long.  Since my appointment was late in the day, I was expecting a long and stressful wait, but he was on time. My CT scan was clear and I was two for two on my tests!  

However, my lambda light chain had gone up again and was at 42.64.  My doctor had consulted with his colleague and they both advised that we just sit tight at this point.  The small number of myeloma cells are not hurting me or making me ill,  so we will wait until January to make any decisions on how to proceed.  My oncologist will consult with the myeloma experts at Fred Hutchinson Cancer Research Center in Seattle to get their opinion.  

Realistically, I know that the time will come when the myeloma cells will need a "slap down" but the time is not right now and I am not going to worry about it (much) until my next appointment in January.  In the meantime, I am going to start getting excited about Christmas and enjoying the season.

Here I am relaxing and enjoying Christmas in my living room.