Superhero

Today, I feel like a superhero wrapped in an invisible cape of immunity.  This is a far cry from how I felt two weeks ago. My WBC had crashed to 1.5 (range: 4.5 -10.0 K/ul) and my absolute neutrophils were .70 (range: 1.5 - 8.0 K/ul).   I felt frightened and extremely vulnerable so I put myself into isolation.  As it turned out, I didn't mind restricting myself to our house because I developed a miserable cold and cough and didn't feel like going anywhere.  In fact, I was unable to have my chemo last Friday because I was too ill. In the meantime, my lambda light chain (myeloma marker) has gone back up 17 points. 

I am happy to report that I think I have battled this cold into submission.  This meant that I was able to go to the clinic and have my chemo today.  After my blood draw, I settled into a comfy recliner in the infusion room, but I couldn't relax as I waited for the results.  Reasonable and unreasonable thoughts were quarreling in my head as any cancer patient can relate to.  Would my counts go down again? A big worry since they were so low and didn't have much room to drop.  Would they go up?  One could hope... What if I can't have chemo? What if the myeloma is taking control? Would I have to see the doctor before my scheduled appointment in two weeks? My mind was awhirl.

You can imagine my surprise and elation when my results came back and my WBC was 5.4!  Yes, 5.4!  My absolute neutrophils were an equally astounding 3.8.  Now, I know what you are thinking,  "Of course, those numbers went up.  You have been battling a pretty miserable cold and cough."  I know you are right, but it sure did feel good to see 5.4 after 1.5.  Realistically, I know that after today's treatment and Friday's treatment, they will probably go back down and I am ready for that.  But, I don't expect them to go back to near zero. . .ever again.

Knowing that my WBC is no longer in the perilous zone has made  me feel like a superhero with super powers protecting me.  I haven't felt like that for quite awhile, if ever, and I know it will be fleeting because I live in the multiple myeloma world where blood count numbers go up and down on that winding wicked roller coaster.  But, for awhile, I think I will relish being a superhero for a few days. 

Can you see my invisible cape of immunity?  If I squint my eyes, I almost think I can.

Crashed

We just spent a week in Washington, DC sightseeing and attending the Alpha Delta Kappa International Convention. Alpha Delta Kappa is an international honorary organization for women educators. It was our third trip to Washington and we have visited many of the attractions in the past, so we were planning a more leisurely tourist schedule. 

It is a good thing that was our plan.  In the morning of departure day, I ran into our bathroom to get one more thing and ended up kicking an open drawer at the bottom of the vanity with the top of my foot. Before I could get back out to the kitchen, it looked like I had a hard boiled egg under the skin at the point of impact and, oh, how it hurt!  Fortunately, I had a bag of frozen peas in the refrigerator, so off we went to Seattle-Tacoma International airport to catch our early morning flight.  I kept the makeshift icepack on my foot all the way there and the swelling went down quite a bit and the pain went away.  I got more ice at the airport and then again on the airplane.  Thankfully, we had a non-stop flight from Seattle to DC.  By the time we reached our hotel, my foot was looking pretty ugly but I could move my toes and move my foot all around so I knew nothing was broken.The next two days we spent walking and sightseeing and walking some more and my foot kept swelling.  It didn't hurt so I kept on going . . . yes, I really did. 

The main sites we visited were the World War II Memorial, Vietnam Memorial, Smithsonian Museum of American History and the National Archives.  Of course, we enjoyed seeing the Capitol from across the National Mall, the Washington Monument that was undergoing repairs, the White House and all of the other beautiful buildings and monuments. The best part of all was spending time with our nephew and his girlfriend who live in this a grand and beautiful city.

On the third day we were there, the Alpha Delta Kappa Convention began with the Educational Symposium.  The convention covered four wonderful  days of speakers, classes, conducting business, and electing officers. There were luncheons and the whole event culminated with a lovely banquet and installation of officers. The highlight of any international convention for me is reconnecting with friends from all over the organization and making connections with new friends.  I love this organization and I love the dear friends that have come into my life because 35 years ago I accepted an invitation to membership. These friends have been a huge source of love and support to me since my diagnosis of multiple myeloma and I am eternally grateful to them.

Are you wondering about the title of this post?  No, it doesn't refer to my foot crashing into the drawer.  What it  refers to is my latest blood count.  Before I went to DC, my doctor wanted to see me one more time and check my blood to be sure I should be going on this trip.  My WBC was 4.2 (higher than usual but a little below normal), my RBC was 3.1 (low but typical for me), my platelets were fine and my absolute neutrophils were 3.1 (not bad at all).  I was good to go!

We returned home on July 8 and I had my monthly appointment with my oncologist on July 9 and we were going begin the next cycle of treatment.  Usually, by the time I am in the doctor's office to talk with him, I have had my blood drawn and the numbers are on the computer for him to check.  This time there were no numbers because the equipment in the lab was down.  So, after talking with my doctor, I went into the infusion room to wait for the results and then begin treatment.  When my numbers finally were posted, I was shocked to find out that in a week and a half my WBC had crashed from 4.2 to 1.5 and my absolute neutrophils had crashed to 0.7!  I was unable to begin the next cycle of Velcade and was sent home and my Friday appointment was cancelled.  I will return next Tuesday to try again.  It was disappointing, surprising but mostly just plain scary. I am hoping maybe my white blood cells were too busy healing my foot injury to show up for a blood test.  I will be on pins and needles until my next appointment on July 16.

My light chain and Beta 2 microglobulin results are still pending and I am nervously awaiting an email that tells me the results have been posted online. To say that a cancer journey is a winding ride on a wicked roller coaster is an understatement.  

On a more positive note, we are having a beautiful and warm summer in Washington State and that always lifts my spirits.  Also, we had another family of robins living in our wisteria this year.  I never did get to see the fledglings but I did get to hear their twittering each time mom brought food to the nest. In my May 2012 archives, there is a post entitled, The Fledgling.

The White House

On our second visit to DC, we had the privilege of

touring The White House. 

Ready for Father's Day on our porch.

Wisteria Window

The robins' nest cannot be seen in this picture but it is near the top

of the picture and a bit to the left of the bouquet. The bouquet

is on our dining table and the robins don't mind

when we are sitting there having our dinner.

Living Our Vows

June of 1969 was a whirlwind of activity.  I was just completing my first year of teaching and celebrating that I had survived all the trials of a new and inexperienced teacher.  However, the most exciting activity was planning my wedding that would take place on June 28.  Brent was due to return home after a year in Viet Nam, but we had no idea what day he would arrive.  We were pretty sure he would be home a couple of weeks before the wedding, but in those days they didn't give an exact date.  

As it turned out, I was at a bridal shower and had just opened the last gift when the phone rang and it was Brent's dad calling to say that Brent had just arrived home!  You can imagine the surprise and excitement at that news.  My mom and I had driven to the shower in my 1966 GTO with a 4  speed on the floor transmission and she had to drive it home because I left in a hurry with Brent's mother to go see him.  My mom had never driven a car like my GTO and to this day doesn't know how she did it.  

The next two weeks were spent finishing up wedding preparations and helping Brent adjust to life at home and, I suppose, the idea that he really was getting married!  

June 28th finally arrived and it was a lovely sunny day. Our wedding was held in a beautiful church where we were surrounded by family and friends.  My class of 24 fourth graders were escorted in by the ushers and seated in a place of honor.  As I waited in the foyer with my father to walk down the aisle, we listened to Ave Maria being sung and I will never forget that quiet moment with my dad.

Our vows were standard vows that I had heard many times before and I know when I said them, I meant every word.  However, I don't think at the time I could have appreciated how important they were and that we would be living them on a day to day basis.  When I became ill and was diagnosed with multiple myeloma in January of 2010, we began living our wedding vows in ways we had not had to before.

"I take thee to be my wedded wife, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part, according to God's holy ordinance."

In sickness and in health. . .Brent has honored this vow with great love and patience.  He has been there with me for every step of this difficult medical journey that has consumed our lives for the last three and a half years.  I am grateful every day for our life together and the vows we made 44 years ago.  I love you Brent......

June 28, 1969

Our Wedding Day

We were so young with our whole lives ahead of us.

I have written two other posts about my wonderful husband, Brent, and the great care he has taken of me:

February 2012    In Sickness and in Health. . .My Hero

http://caroleleighi.blogspot.com/2012/02/in-sickness-and-in-health-my-hero.html


June 2012           My Bridge

http://caroleleighi.blogspot.com/2012/06/my-bridge.html 

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!