Waiting for Results

Waiting for test results is a way of life for cancer patients and it never seems to get easier.  One would think that after nearly three years of monthly blood tests and daily blood tests during stem cell transplant, several MRIs and CT scans, and  multiple bone marrow biopsies, waiting for results would get easier.  

Last Monday, I had yet another bone marrow biopsy because my last blood work showed that the  lambda light chain (a myeloma marker) had gone up out of the normal range.  My oncologist keeps me on a tight rein so he said a bone marrow biopsy was needed to see exactly what is happening.  So now, I am in "waiting for results" limbo.  It isn't easy but I suppose in some ways it has become somewhat less daunting.  I find that I don't spend every day worrying about it now and if the news isn't good, it won't be a shock.  My appointment with my oncologist to get the results is next Thursday and I do know as it approaches, I will become more on edge.  However, I have been through this many times and I have survived the ordeal before, so I know I can do it again.

I recently received the latest Patient Power posting and there  is a very encouraging interview with Dr. Sagar Lonial, Professor at Winship Cancer Institute of Emory University, Director Translational Research, Emory Healthcare. Dr. Sagar discusses "Using Combination Therapy to Treat Multiple Myeloma."  In light of my recent setback, I felt more hopeful after listening to this interview:

www.patientpower.info/video/using-combination-therapy-to-effectively-treat-multiple-myeloma/?autoplay=1&utm_source=event-list&utm_medium=email&utm_campaign=myeloma-2012-columbus&utm_content=thumbnail-title 

Reality Was Waiting

When I returned home from our European Escape, reality WAS waiting for me.  Shortly after recovering from jet lag, I had to go to the clinic for my monthly blood work.   A week later I saw a physician's assistant to get the results because my wonderful oncologist was on vacation.  Lately, when I have had blood work done, I have been worried about my lambda light chain because it has been trending up over the last few months but staying in the normal range.  This time my worry was warranted because the numbers had moved out of the normal range and the ratio between the kappa and lambda light chains had gone down.  It was upsetting to see those numbers even though I have been expecting it to happen.   

Fortunately, my oncologist got home and I was able to see him two days later because of a cancellation. What a relief it was to talk to him.  He doesn't sugar coat things, but he always calms me down.  Together we decided that a bone marrow biopsy is in order.  After we get the results, we will know what the next steps are.  He may want me to go back to Seattle Cancer Care Alliance for a second opinion.  SCCA is where I had my stem cell transplant.  

It is so hard to think about beginning the battle against multiple myeloma again.  In yoga class it struck me that I was there trying to make my body strong, but the myeloma  cells may be on attack trying to harm me.  I am trying to keep positive thoughts and am thankful that my doctor has kept me under monthly "surveillance" which makes it likely that any misbehaving cells may just be getting started.

If it turns out that I have relapsed, then it is time for a  SLAP DOWN!

Me with my beautiful daughter, Marisa

European Escape

It was three and a half weeks of magical thinking.  I was nine time zones away from home and my day to day life which always includes multiple myeloma lurking on the edge of my consciousness. No matter how well I am feeling or busy I am, the spectre of multiple myeloma is always present.  It is astounding what several thousand miles, several time zones and a different continent can do for my thinking; it becomes magical.  In Italy, Germany and Mallorca multiple myeloma was so remote from my mind that I could just about imagine that it really didn't exist in my life.  Magical thinking.

Our first stop was Bologna Italy which is considered the food capital of Italy.......and, therefore, the world!  Bologna is a beautiful city with a color palette of terra cotta, ocher and warm earth tones.  It is known for its 23 kilometers of porticos lining the streets.  The porticos were stunning!  Some were elaborate and some were rather plain but they were an amazing sight to see.  The University of Bologna,established in 1088, is the oldest university in the western world. It was exciting to visit the campus and mingle with the students.  Our hotel had a lovely rooftop terrace with fabulous views in every direction.

My favorite portico in Bologna

View from our rooftop terrace in Bologna.

Our next stop was beautiful Verona.   We stayed at the Hotel Guilietta e Romeo near Piazza Bra and the Roman arena. Did you know that Verona has pink and white marble sidewalks?  It seemed almost unbelievable that any city would have marble sidewalks, but then I learned that Verona is the center of the marble industry and over the centuries it it has been their most abundant building material.  Verona is a lovely city with so many things to see from an ancient Roman amphitheater to Juliet's balcony.  We walked miles or should I say kilometers, toured, dined on fabulous food and ate gelato everyday.  We loved Verona.

Verona 

Hotel Guilietta e Romeo in Verona

Notice the white marble sidewalk in front of the hotel.

 This first century AD  Roman arena in Verona still in use

today for opera, concerts and other events.

From Verona, we took the train to Weilheim, Germany and the home of my brother-in-law and sister-in-law, Larry and Joan.  We hadn't seen them for a year so it was wonderful to catch up on things, reminisce, laugh and enjoy delicious food prepared by Joan and Larry in their cozy home.  Weilheim is a beautiful Bavarian town with a population of around 25,000.  We enjoyed shopping and relaxing and, of course, we did have beer!  Nearby Andechs Abbey is famed for its  Baroque church (1712) and its brewery where the monks have been brewing beer for centuries. On a beautiful sunny day we made the pilgrimage to Andechs to enjoy beer and pretzels out on the terrace.  The big pretzels and delicious cheese were perfect partners to the cold, frosty beer.  It was a church holiday so it was crowded with happy celebrants.

Weilheim city square

 Brent and his sister, Joan

 Andechs Abbey

Andechs - Marisa

 Helmut and Larry on the terrace at Andechs

Me in awe of all the empty beer mugs at Andechs.

After several days in Weilheim, we all flew to Mallorca, Spain to spend a week in a villa in Capdepera.  The villa was situated on a hill above the village of Capdepera and the view was stunning.  Castell de Capdepera was across the way and it was a view we enjoyed throughout our stay.  At night, the castle  was illuminated and that was quite a sight to behold. The weather was pretty nice and Brent did get to spend a couple of days on the beach.  We spent a day in the beautiful capital city of Palma and even witnessed an anti-austerity protest at city hall!  We enjoyed the sights and tastes of Mallorca and it was especially nice to go home each day to the villa where we were warmly greeted by the neighborhood cat.

The Villa: Es Clape

The view of Castell de Capdepera from Es Clape

 Marisa and I enjoying yogurt and fruit in Capdepera

The sweet neighborhood cat

 

After 23 days, our European Escape finally came to an end.  Many lasting memories were made, tons of pictures were taken, we met new friends, we ate and we talked and we walked and walked.  It was three and a half weeks of magical thinking, but it couldn't last forever.

As we were flying home, I was reminded of Maurice Sendak's children's classic, Where the Wild Things Are.   

At the end of the story ...

"Max stepped into his private boat and waved good-bye and sailed back over a year and in and out of weeks and through the day and into the night of his very own room where he found his supper waiting for him."

I felt a little like Max as I waved good-bye and boarded the plane and flew over Europe and in and out of time zones and over the ocean and across Greenland and North America and back to Seattle where I found my real life waiting with blood tests and oncologist visits  . . . more on that later.

A stunning view of Greenland. 

Slap Down

The cancer can live in my body  as long as it wants, provided it's a quiet tenant.  And when it gets out of hand,  

we slap it down.

Jill Cohen

Today, when I opened up the Fall 2012 issue of Cure magazine, the first thing I saw was this quote.  It was highlighted in an article entitled "The Estrogen Effect."  Jill Cohen learned she had metastatic breast cancer in 2002 but she has long outlived the statistical odds.

As a multiple myeloma survivor, this quote really spoke to me. I know that even though I am in remission, myeloma is always lurking in the background.  Yesterday, I saw my oncologist and got my latest blood work results.  My WBC had come up to 3900 from 3100 and my RBC was up a bit, although, still below normal.  Platelets and neutrophils were both in the normal range.  While my kappa and lambda light chains were in the normal range, my lambda chain has been trending upward  for several months.  I don't like that.  Will it exceed the normal range in a month when I am checked again? Will it be in two months? Will it be next year? One can never know.  This is quite worrisome to me but my doctor keeps me under close surveillance and if the evil myeloma cells start misbehaving, they won't get very far in their deadly work before they are discovered. Then it will be time for a slap down!  Thank God for the many advances in treatments for multiple myeloma.

Even though my lambda chain isn't behaving the way I want it to, I have had several months of feeling well and enjoying life again and I plan on continuing. I have started yoga and I am volunteering at the Providence Regional Cancer Partnership.  It feels good to be back navigating the real world instead of the medical world.

Aislinn Striking a Pose Again

What a lovely bundle of paws she has.  She is quite the beautiful lady.

 

A Change of Perspective

Don't regret growing old. It is a privilege denied to many. It is hard to see those wrinkles and tough to watch your hair grey but you're lucky when you get a chance to.                                                                          The Bridge

 It struck me this summer that there are two big things I don't have to worry about anymore. Before I became ill, I worried about getting old.  I didn't spend a lot of time dwelling on it; I just noticed there were more wrinkles, a few grey hairs and my body wasn't as agile and energetic as it once was.  Being in my early sixties it was obvious that I had probably lived over two thirds of my life given my genetic history.  I didn't fret about it much but I did think about it.  Now that I have been diagnosed with incurable cancer, I hope and pray that I continue to get old! Living to be 70 or 80 sounds positively wonderful - wrinkles and all! Everything is relative.

The second thing I don't fear anymore is being diagnosed with cancer. When this thought came to me, I did have to chuckle at the absurdity of it. Thinking about someday having cancer wasn't something I ever spent a lot of time on but, like everyone else, I always hoped it wouldn't be part of my life.  Well, now it is and I don't have to worry about being blindsided by it.  If I relapse, which I probably will someday of course,  I will be tremendously upset.  However, it will never be like hearing for the first time, "You have multiple myeloma and it is incurable."  Isn't it interesting how one's perspective can change in light of a cancer diagnosis?

On Wednesday, I saw my oncologist for the first time in two months. It was good to see him since he has become such an important part of my life and I so enjoy his sense of humor. Having an oncologist who can make me laugh is a blessing in my book. The results of my blood work were mixed.  The best news was my kappa and lambda light chains and ratio are still in the normal range.  The not so good news was my WBC took a bit of a nosedive from 4300 to 3100.  That was really disappointing to me because I have been feeling so well and have started getting "back into my life" as I stated in the last post.   I couldn't help but worry even though I know my WBC has dropped before.  I have been feeling somewhat gloomy the last few days because of this and I am working to overcome that.

Last Monday, my husband and daughter and I rode on the Great Seattle Wheel which is located on the waterfront.  It was a stunningly beautiful day and Seattle never looked more scenic.  It was another small moment to savor.

The Great Seattle Wheel

 View While Waiting in Line

Washington State Ferry

Space Needle

               

I couldn't resist : )

Beautiful Girl, Lily 

Where Did August Go?

It is nearly the end of August and I just realized that I haven't written a single post since July 31!  As I looked over my archives, I saw that I had posted at least four times a month since I began this blog in January of 2012.  What is happening to me?

To be honest, I have just been too busy getting back into my life!  Starting the Livestrong Exercise and Thrive program has been instrumental in my improved energy and attitude.  Traveling to Denver and Boston and volunteering have kept me active.   Household chores have become easier and I don't get as tired. I have taken on some new responsibilities in Alpha Delta Kappa International Honorary Organization for Women Educators where I will be chapter secretary and chairman of the WA State Bylaws and Resolutions Committee. If I didn't know better, I would think everything is back to normal.  

Next week, I see my oncologist for the first time in two months.  Last Wednesday, I had my blood work done and I am on pins and needles thinking about what the results will show. At times like this, the reality that my life will never be the way it was before comes into clear focus.  No matter how well I am feeling or how normal I seem, it doesn't erase my multiple myeloma diagnosis.

On a positive note, I would like to share a link to Patient Power where Dr. Craig Hofmeister, a myeloma expert from Ohio State University, talks about excitement and hope for patients.  After viewing this link, I felt more hopeful for the future.

http://www.patientpower.info/video/an-exciting-time-in-multiple-myeloma-dr-craig-hofmeister-explains

Are you wondering what the picture at the top has to do with this post?  Well, it has absolutely nothing to do with it!  Last weekend, my daughter and my niece and I went to Tweets in Edison, WA (I have mentioned this charming cafe in previous posts) and we shared this scrumptious peach and blueberry pie with mascarpone whipped cream and sipped cappuccinos as we savored another small moment.

Chinese Proverb

You can only go halfway

into the darkest forest;

then you're coming out

the other side.

                               Chinese Proverb

When I read this proverb for the first time, I thought it was such a simple idea and it is.  However, the metaphor can be profound for a cancer patient/survivor.  

As I was beginning my multiple myeloma journey, it felt exactly like I was in a dark forest that was spread out around me in all directions with no pathway into the light.  I remember feeling that for the rest of my life I would be moving through the darkness of an incurable illness.  I soon found out that I wasn't traveling alone and there were shafts of light filtering through the darkness of the forest.  My family and friends and medical community surrounded me with love and support and gave me hope that I  had life beyond the darkness ahead of me.  I wish I had the benefit of the wisdom of this proverb at the beginning of my odyssey.

Reaching the halfway point in the dark forest happened for me several months ago and this summer I have reached the edge and stepped into a light filled  meadow.  I have regained so much strength and stamina and my recent trips to Denver and Boston have given me a sense of normalcy that has been completely absent for the last two and a half years.  I know that my new normal is a life re-invented, not the way I would have imagined, but it is the life I have.  

In this new re-invented life, I have found myself to be a stronger person who is less troubled by the small things that used to cause  me to worry and fret.  I do think I am enjoying and savoring the small things much more than I did in the past, realizing they are the "frosting on the cake" in so many instances.  I have always cherished my family and friends, but even those relationships have been greatly enriched by this journey through darkness into the light.  

On top of all this, I feel well.

Photos to share . . .

 The view of Boston from our 15th floor room.

Boston at night with a crescent moon - again, from our room.

Historic Faneuil Hall in Boston

Make Way for Ducklings

at

Boston Commons 

 John F. Kennedy Presidential Library

Boston 

 

Update . . .

Sadly, I have to report that Romola Robin left her nest in our wisteria and didn't return.  My hope is that she realized that the eggs would not hatch and she is safe.  My son, Tyler, reached up into the wisteria and took this beautiful but sad picture.