Balance

Life is like riding a bicycle. To keep your balance you must keep moving.

                                                                                                          Albert Einstein

What good advice from Albert Einstein.  Not only was he a brilliant scientist and mathematician, he was very wise.  I clearly remember learning to ride a bicycle.  In fact, to this day when I drive down the street where this important milestone in my life happened, I still think about it.  When I was learning to ride, I don’t think I really thought about the fact that if I would keep moving, I could keep my balance and I am sure the physics of riding a bike never entered my mind. After several attempts, I was able to keep my bike moving and stay upright.  On that day I became a proud bike rider.

In a recent post, Metaphor, I told about feeling that I had lost the wind at my back after my multiple myeloma diagnosis, treatment and recovery, remission and the ensuing stage of survivorship. I felt out of balance and I was not moving and I was languishing in the doldrums of life. At the end of the post, I mentioned that I thought was starting to feel a little breeze.  

I am happy to say that the breeze is picking up and I am beginning to sail out of the doldrums.  My participation in the Livestrong Exercise and Thrive program for cancer survivors at the YMCA has been a positive change and it is literally keeping me moving. I have high hopes that this program will help me to achieve balance.  

 In a few days, I will be flying to Denver for a conference of Alpha Delta Kappa International Organization for Women Educators.  This is a big step because I will be going by myself.   I have ventured out without my husband very little since my diagnosis. I did travel to Germany last November without him, but my daughter was with me and I wasn’t alone. However, it did feel like a giant step to be getting on an airplane without him.  For so long, I have felt vulnerable without my husband there to watch over me as he has done throughout this myeloma journey.  When I get to Denver, I will be with friends and I am looking forward to that.  I know this conference will be rejuvenating and it will keep me moving and help me keep my balance.

It is my hope with each new step forward, my balance will get stronger and I will be fully living again with the wind at my back. 

This has nothing to do with my post, but I must share this picture of my dear cat, Lily.

My Bridge

Yesterday while I was driving my car, I heard Simon and Garfunkel’s Bridge Over Troubled Water and I was pleased as I heard the first few bars because I have always loved the song.  Mostly, it is the musical arrangement and instrumentation that I have liked so well.  I knew  most of the words, but had never really related to them.  As I mentioned in my last post, Metaphor, I think I have mostly had the wind at my back during my life and it wasn’t until I was diagnosed with multiple myeloma that a  big storm arose and I entered into “troubled water.”

I found myself, for some reason, intently listening to the lyrics of the song and it brought me to tears.   As the tears streamed down my face, I realized that my hero and husband of many years, Brent, could have written those words.  He has been my Bridge Over Troubled Water throughout this ordeal. The lyrics of the chorus say, “I will lay me down, like a bridge over troubled water…”  and I feel like that is exactly what he has done for me.  

Even the words, “Sail on silver girl,”  relate to my story of living life with the wind at my back.  It may be that Brent is the wind at my back, always encouraging and loving me.

Coincidentally, Paul Simon wrote this song in 1969, the same year we were married.  Little did I know  as I enjoyed this song in the early years of our marriage that the lyrics would someday come true.  I am, indeed, a fortunate woman. We will be celebrating our 43rd anniversary on June 28th.

Happy Anniversary Brent!
I love you . . .

Lyrics to Bridge Over Troubled Water by Paul Simon, 1969

When you're weary, feeling small
When tears are in your eyes,
I will dry them all
I'm on your side
When times get rough
And friends just can't be found 

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down 

When you're down and out
When you're on the street
When evening falls so hard
I will comfort you
I'll take your part
When darkness comes
And pain is all around 

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down 

Sail on silver girl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
When you need a friend
I'm sailing right behind 

Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

Metaphor

I come from a long line of sailors.  On my mother's side, my great great great grandfather was a sea captain in the first half of the nineteenth century.  On my father's side, my great grandfather was listed as the only sailor in his company - all the rest being farmers - on his Civil War muster papers from the State of Michigan.  A treasured family heirloom is this photograph of three sailing ships on Lake Michigan. My grandfather had written these words on the back of the picture:

"21st Birthday, July 26, 1902 - On our way to Manistique with 1600 pounds of apples on the Mary L in company with Rambler and Lulu Guy"

My Grandfather

My dad inherited this great love of the sea and it defined  his life.  He spent eight years in the U.S. Navy including WWII. (If the truth be told, he would have made the navy a career if my mother would have been willing to move.  She didn't want her children to be moving frequently and I can appreciate that.)  After the war, he became a commercial salmon fisherman in Washington State and he fished many years in Southeast Alaska.  In his later years, he had a sailboat that he was able to sail by himself until he was 87 years old.  He was never happier than when he was on the water.

  
My Dad

Though I have this nautical history in my family, I have never had that strong connection to the sea and my only sailing experience was with my dad.  Oddly enough and maybe because of my heritage, I have come to view sailing as a metaphor for my multiple myeloma odyssey. 

Throughout my life, I have had the good fortune to have the wind at my back.  You might say I have sailed through life pretty easily . . . until now. I grew up in a loving home with parents who taught me well and prepared me for a productive, happy life.  I was a good student in school and had lots of friends and I participated in many activities.  I went on to graduate from Western Washington University and had a long and successful career in education.  I married my WONDERFUL husband 43 years ago and we have two great children who we are very proud of.  We lived a good and mostly trouble-free life until January of 2010 when I was diagnosed with multiple myeloma.

When that happened, the gentle wind at my back that had been propelling me through life, became a violent storm. This great fury damaged my "ship" but didn't sink it.  Radiation, chemotherapy and an autologous stem cell transplant repaired the damage, but I no longer sense the wind at my back.  I am in the doldrums, like those latitudes in the Atlantic and Pacific Oceans where there is no wind and sailing ships can languish for days and weeks.  I, too, have been languishing.  

I have found it difficult to get motivated and excited about moving on with my new life and I am not sure why.  One thing I do know, I am wasting precious time.  This sense of malaise has been dampening my spirit and I want it to end.  I want to feel the wind at my back again.

Update:  

I wrote the draft for this post over a week ago.  A few days later, I went for a preliminary screening for the Livestrong Exercise and Thrive program at the YMCA and I came away with a renewed spirit.  Was that a hint of the wind at my back I felt?  Yesterday, I made reservations for two Alpha Delta Kappa International Honorary Organization for Women Educators Regional Conferences and will be going to Denver and Boston this summer.  Is that a breeze I am feeling?  

Maybe the lesson for me is to begin living again, inhabiting my days and making plans for the future.  I am determined to make that happen.  I know there will be setbacks, but I can't let that stop me.  When I really feel the wind at my back, I will know I have succeeded.

New Arsenal of Drugs

Patient Power's Andrew Schorr has a new interview with Paul Richardson, MD, Clinical Director, Jerome Lipper Center for Multiple Myeloma, Dana-Farber Cancer Institute in Boston.  The title of the post is quite encouraging:

"New Arsenal of Drugs Fighting Myeloma"

I found the interview to be informative and exciting and hopeful.  Here is the link:

http://www.patientpower.info/video/new-arsenal-of-drugs-fighting-myeloma/?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=myeloma-2012&utm_content=video-thumbnail

Proud

In previous posts, I have mentioned that I had the good fortune to be treated at Seattle Cancer Care Alliance which includes the world renowned Fred Hutchinson Cancer Research Center.  We, in the Seattle area, take great pride in the ground-breaking research done at "The Hutch" and the Nobel Prizes they have been awarded. It has been a blessing, indeed, to have been treated by Fred Hutchinson doctors and have a center of this caliber so nearby. I am eternally grateful to the doctors and staff at the Seattle Cancer Care Alliance.

Here is a link to their website and an article about their pioneering work in bone marrow transplantation:

http://fhcrc.org/content/public/en/about/pioneering-bone-marrow-transplantation.html

Fred Hutchinson Cancer Research Center

Seattle

Being Fully Alive

 It has been nearly 17 months since my stem cell transplant and I am in remission.  I am feeling well and regaining my energy and trying to rebuild my stamina.  Some of the time I am  more like myself and less like the person who has been “inhabiting my days” and feeling lost in her illness.  Recently, I had highlights put in my hair and, just like magic, I looked like who I was before chemotherapy destroyed my hair.  It seems like a trivial thing, but it felt comforting to look in the mirror and see me.

At our last Survivorship seminar, Finding Hope, Meaning and the New You, the facilitator started out by reading this poem:

Fully Alive

 By Dawna Markova

I will not die an unlived life.  I will not live in

   fear of falling or catching fire.  I choose to

inhabit my days, to allow my living to open me,

   to make me less afraid, more accessible, to  

   loosen my heart until it becomes a wing,

      a torch, a promise.  I choose to risk my

significance; to live so that which came to me as a

seed goes to the next as blossom and that which

      came to me as blossom, goes on as fruit.

I am beginning to feel that I am at a point when I am ready to "inhabit my days" as the poem says.  If I am being honest, I know haven’t been doing it very well yet.  The days seem to slide by and I find it hard to get excited about much and I wonder what, if anything, I am accomplishing.  Then I begin thinking about the fact that my life is likely to be shorter than I thought and it troubles me that I am wasting precious time.  

In a recent blog post, Andrew Schorr of Patient Power made a powerful statement that has given me inspiration:

Yes, it can be tiring to tell people one after another that you are okay, that you are feeling hopeful about the future, and that you are determined to live every day to its fullest. But I know they are asking out of love. And, beyond that, it is a “teachable moment.” We patients, as we continue to live life, are proof that treatments can work and that our determination to live and live well matters. We can give other people hope just by showing up . . . 

Setting an example of hope for other cancer patients is something I feel responsible to do. Thank you to Andrew for helping me recognize this.  Knowing that Geraldine Ferraro's multiple myeloma story gave me hope is another compelling reason. (See February post)  I think this may be something I could get excited about and my hope is that as I feel better and my energy level rises, I will become “fully alive” and start making good use of the time I have to make a difference.

Link to Andrew Schorr’s blog on Patient Power:

http://blog.patientpower.info/2012/05/21/im-alright-jack/


Just for fun, I would like to share this picture of the Space Needle in Seattle.  It is 50 years old this year and to commemorate the anniversary, they have painted the top the original Galaxy Gold. When I was 16, I had the privilege of attending the opening day of the Century 21 Seattle World's Fair and what a memorable day it was.  I think the Space Needle is still a futuristic and magnificent sight all these years later. 

“No Drama” Continues

Last Thursday, I had my monthly appointment with my oncologist and I had my Zometa infusion.  WBC and RBC were up slightly and Kappa and Lambda light chains from last month were in the normal range.  The best part was that my doctor said there is nothing that he is worried about.  So, that means I am not going to worry until my next appointment in June!  No drama . . . 

There is a Livestrong exercise program at the YMCA and it is in conjunction with Fred Hutchinson Cancer Research Center.  I have been planning to begin the next twelve week session in June. However, when I received information in the mail today,  I was disappointed to see that being diagnosed with multiple myeloma appears to disqualify  me from the program.  It is the only cancer listed as a disqualifier and I am sure that is because multiple myeloma affects the bones.  I called the coordinator to see if that disqualification was cast in concrete or if they made exceptions.  I explained that I have had no bone issues since I was diagnosed.  She said she will check with Fred Hutchinson Cancer Research Center.  They have all my records since it was their medical team that treated me during my stem cell transplant.  I do hope I can begin this program. 

Their tag line is:  

 Livestrong at the YMCA – Exercise and Thrive 

 I NEED TO DO THAT!

In my post entitled, Start Walking CL, I set some goals to inspire me to get back into my walking routine: 

Goal #1:   Walk for 20 minutes 3 times a week.

Goal #2:   After two weeks, increase number of   

                walks to 4 times a week.

I happy to report that I am accomplishing those goals and I know it is because I put them out there for you to read and I feel obligated to be successful!  Thank you for being a reader and helping to keep my feet to the fire!

Update on The Fledgling  

While I haven’t seen my little fledgling again, I can report that the mother bird has begun nesting again.  At first, she tried to build a nest in a different part of the wisteria.  She wasn’t finding much success, so she has started refurbishing the old nest.  This morning while I was having breakfast on the porch, she was coming and going with nest building materials and working on the nest.  I tried very hard, without success, to get a picture of her with her beak full of grass and straw and twigs.  All of this activity took place about five or six feet from where I was having my breakfast.   It was another one of those small moments that are to be treasured.

Mother's Day

Yesterday, my daughter made me a lovely breakfast for Mother’s Day and we enjoyed it on the porch surrounded by the fragrant wisteria. Another small moment to treasure. 

Here I am enjoying toast, coffee and a perfect soft boiled egg in a beautiful egg cup:

This has been a week of No Drama and I love it.