True Hope

True hope is swift and flies with 

swallow's wings;

Kings it makes gods 

and meaner creatures kings.

William Shakespeare

Since last October when my lambda light chain moved up out of the normal range, I have clung to the hope that my relapsing myeloma would respond to treatment.  

At first, the upward trend of the light chain was something to keep under surveillance with "watchful waiting" the medical plan.  When it kept elevating, low dose Velcade injections every other week became the plan of action.  After eight weeks, the light chain leaped up to 100.86 and a new and more aggressive plan of attack began.  

In my last post, I mentioned my discouragement when I wasn't able to complete the first cycle of this more aggressive treatment because my platelets, absolute neutrophils, WBC and RBC had taken a dive.  How was the Velcade supposed to work if I couldn't get through the first  cycle of treatment?  I had to work hard to keep the word hope in my vocabulary.

Last week I had my monthly oncologist appointment and complete blood work done.  My counts were back up and I was able to begin my second cycle of treatment and I felt a glimmer of hope that this cycle would be different.  I knew I would have to wait a few days to get the results of the light chain tests, but I receive them online  and it was just a matter of waiting to hear.  I expected to be notified on May 20 or 21, but I was in for a surprise.

Last night (Saturday night!) at about 9:00 PM, I received an email telling me my results were available online.  It was with trembling hands that I went to the website and typed in my user name and password.  I had convinced myself that I would be happy if the light chain had gone up again but at a slower pace.  My expectations weren't very high.   

True hope WAS swift and it did fly on swallow's wings!  My lambda light chain had gone DOWN to 69.82 from 100.86 in April and 83.81 in March!  It is the first time in months that  I felt my hopes soar.  The light chain had dropped about 31 points with only three of the four planned treatments.  What will it do if I can have all four in the second cycle? I know I still have a distance to go before I get back into the normal lambda light chain range of 5.7 - 26.3, but my new number sounds a whole lot better than 100.86!  And besides, this is the first time since July of 2012 that the number has reversed course. 

As exciting as the drop in the light chain is, I am just as happy to know that Velcade is still working for me.  There are a number of drug options available, but I am thankful that I may not need them yet.  It is good to have an arsenal in reserve.  

~TRUE HOPE~    

Disappointing Start

It is the third week of the first cycle of my new battle plan to defeat the recurrence of multiple myeloma. The cycle calls for Velcade twice a week for two weeks with no treatment on the third week. I am not off to an auspicious start.   

Week One:  I had Velcade on Tuesday and Friday. The treatment seemed to cause a low grade headache and I was pretty tired, but it was manageable.

Week Two:  On Tuesday I went in for treatment and my CBC showed that my platelets had dropped to 92 which required the nurse to get approval from the doctor to proceed with the Velcade injection which I had.  My next treatment was scheduled for Friday.  As I expected, my platelets had dropped again - to 68!  My WBC, RBC and Absolute Neutrophils (infection fighters) had dropped as well.  Much to my dismay, I was unable to have treatment that day. Managing chemo drugs and blood counts is like walking a tightrope, so I am thankful to have such a fine team of medical professionals taking care of me.

Week Three:  I am on vacation from treatment until May 14.  Vacation sounds like it should be a good thing, but I am feeling discouraged that I couldn't get through the first cycle without my numbers dropping below the threshold for treatment.  Until I can be assured that my CBC numbers have rebounded a bit, I will be keeping a low profile.  In fact, I just sent Brent off to the grocery store to do some shopping!

On a much brighter note, we have been having lovely weather.  Yesterday, Seattle tied with Phoenix for the highest big city temperature in the country - 87 degrees!  This warmer than usual weather has made for a glorious display of wisteria on our porch. The wonder of nature and the rebirth each spring brings is a boost to the most flagging of spirits.

Rethinking the Battle Plan

Bortezomib is not living up to its fierce and aggressive sounding name.  I began low dose Velcade (Bortezomib) treatments in January, receiving injections every other week.  During that time my lambda light chain numbers kept going up, the kappa/lambda ratio kept going down and  the Beta 2 Micro-globulin serum continued to trend up.  

                                 01/3/13    01/31/13    03/06/13    04/10/13
Kappa Light Chain          7.83         8.25           6.09           6.71  
Lambda Light Chain      51.37        62.64          83.81       100.86
Kappa/Lambda Ratio      0.15          0.13           0.07           0.07

                                  07/05/12   10/26/12   01/31/13   04/10/13
Beta 2 Micro-globulin      2.60          2.81          3.03          3.97

The kappa light chain is staying well within the normal range of 3.3 - 19.4 mg/L.  However, the lambda light chain has moved out of the  normal range of 5.7 - 26.3 mg/L.  It crossed that threshold back in October and just keeps  moving up.  The ratio between the kappa and lambda light chains is below the normal range of 0.26-1.65 and that is not a good thing. The rise in the Beta 2 Micro-globulin is an indicator that low dose Velcade treatments are not working.  The normal range for this component is <OR=2.51 mg/L.

These latest numbers have made it necessary to begin a more aggressive treatment plan.  Beginning on April 23, I will be having Velcade injections twice a week for two weeks in a row and then have one week off. After six weeks of this regimen, we will assess where I am and if we are not making progress in reversing this upward trend,  my doctor will probably add other drugs from the multiple myeloma arsenal.  

I spent about 18 months in remission after my stem cell transplant and even though I knew the myeloma would come back some day, it seemed like that day would be a long way off.   It felt good to be living an almost normal life and I could easily tell myself that the myeloma probably wasn't coming back in the next week or the next month, so I would think, "I don't have to worry about that right now."  I felt like Scarlett O'Hara......"I'll think about it tomorrow."   Multiple myeloma returned sooner than I had hoped or imagined.

Now, I am back thinking about it a lot.  I won't say I dwell on it because I don't, but it has wormed its way back to a more prominent place in my consciousness.  It is always there ready to worry me if I let it.  Some days are harder than others to keep it at bay.  It is difficult to be back in the battle against this disease and I am having a bit of a hard time accepting it.  I know I will overcome that and be able to gather the strength of mind and body to wage this war successfully.  I'm just not quite there yet.

I would like to end on a more uplifting note and share a picture I took last week in the beautiful Skagit Valley of western Washington.   Each spring Skagit Valley hosts a Tulip Festival and tens of thousands of visitors from all over  make the trek to see the acres and acres of glorious tulips.  I am fortunate that this spectacle is just about a 30 minute drive from my home.

Skagit Valley Tulips

 

Making it Through

My book club is reading Rules of Civility by Amor Towles this month and I am enjoying it immensely. To paraphrase the description on the cover, it is the story of a chance encounter in 1937 and the startling consequences that propel the heroine  on a yearlong journey toward the upper echelons of New York society. 

Since my diagnosis of multiple myeloma, I find that more often now I find thoughts and ideas that strike a chord with me in the books that I am reading and I know my emotions are closer to the surface causing me to be moved more easily by philosophical thought. Yesterday, I read such a passage in this book that made me stop and read it again and then write the page number on the back of my bookmark  knowing that I would want to return to it.  Let me share it with you:

My father was never much one for whining.  In the nineteen years I knew him, he hardly spoke of his turn in the Russian army, or of making ends meet with my mother, or the day that she walked out on us.  He certainly didn't complain about his health as it failed.

But one night near the end, as I was sitting at his bedside trying to entertain him with an anecdote about some nincompoop with whom I worked, out of the blue he shared a reflection which seemed such a non sequitur that I attributed it to delirium.  Whatever setbacks he had faced in his life, he said, however daunting or dispiriting the unfolding of events, he always knew that he would make it through, as long as when he woke in the morning he was looking forward to his first cup of coffee.  Only decades later would I realize that he had been giving me a piece of advice.......When a person loses the ability to take pleasure  in the mundane.....she has probably put herself in unnecessary danger......one must be prepared to fight for one's simple pleasures.....


If we lose the joy of simple pleasures, we risk losing that which enriches our day to day lives and gives us hope. I am someone who loves to get up in the morning and read the newspapers and drink freshly ground coffee.  If the day ever comes when I have lost interest in such small pleasures, I will fear that I am losing resolve and, more importantly, hope.  I believe that continuing to look forward to something as ordinary as a hot cup of coffee each morning  could be a metaphor for "making it through" and having hope for the future.  

My Morning Coffee

Savoring my morning coffee  - check! 

Reading the newspapers - check!

Completing the New York Times Crossword - check!  

Enjoying simple pleasures - check! 

 

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. . .