My Journey

Trouble with D Words

Many years ago I took piano lessons from a great master teacher, Donald Denegar. He expected perfection and work and focus and lessons were hard and wonderful!  Well, all but one.

This lesson started out bad…I had traveled that week and had little time for practice. It showed. We spent the entire 90 minute lesson on one and a half measures. Six beats!

I could not get it…right hand “one and e two and e..” oops. Left hand “one and e two and e…” oops!  Over and over. Pause. Deep breath. Left…right…tap…count aloud…”One and e two and e…”

As I stuffed Mozart into my bag I said to my teacher…”I’ve always had trouble with my D words…details…discipline…dieting…Donald…Denegar!  We had a good laugh…but that moment changed me. It taught me a new appreciation for patience, persistence and purpose.  The P words.

I’ll talk about those later…but for now I have another D to add to my trouble with D word list…and it is changing me too…”dying”…I definitely have trouble with this D word!

I’m not afraid of dying. I just don’t want to. Not yet…

Dying before one is ready isn’t fair.

Having to think about dying when life is good stinks.

And as much as I believe I am going to heaven…heaven can wait…

So, let’s get real…life goes something like this…chores, work, complain, more chores, squeeze in some play time…more chores.  Hug the kiddos, hug your better half…pay the bills…save for tomorrow…dream about retirement…do more chores…work…complain…put off until tomorrow…dream.

Routine is established…comfortable…scheduled…planned…then someone shouts in your ear…”YOU HAVE CANCER”…bam!  Everything known is out the window!  Everything looks different…feels different and that comfortable, scheduled life feels different…and that dream…well maybe that dream needs to be reconsidered…tested…maybe that dream is no longer important.

I’m there…and realizing that amid the clutter this has caused, it is a clear and perfect road ahead.  No longer time for distractions.  No time for thinking too much…dreaming for long tomorrows.  My focus is on being as authentic as I can be…empowered by the truth of life…that is precious…beautiful…purposeful.  On this new journey, I am finding my voice again…finding out who I am…finding out that dreaming is good but living is real!

I live now with multiple myeloma.  There is no cure.  But science is moving at hyper speed and new treatment is offering great hope.

Multiple myeloma is a rare cancer.  In the US, the lifetime risk of getting it is 1 in 143 (.07%)!  Compared with breast cancer that saw 250,000 new cases in 2016, there were less than 30,000 for MM. It represents only 1.8% of all new cancer diagnosed each year.*  (American Cancer Society)

I should have been buying lottery tickets!

Multiple myeloma is a blood cancer that develops in the plasma cells in the bone marrow.  Plasma cells are white blood cells that produce antibodies that maintain the immune system.  Myeloma develops when healthy plasma cells transform into malignant myeloma cells.  These bad boys love hanging out in the bone marrow of the spine, pelvic bones, ribs and big bones, and can create lesions that make the bones weak and cause fractures.  Usually the diagnosis is a result of too much calcium or low blood cell counts and often this takes years to observe.  Much of the time back pain is overlooked as just normal aging…the average age of diagnosis is 69!

My back pain was caused by a lesion and fracture of the T5 vertebrae which is how it was discovered.  My routine labs are normal.  I am an anomaly…lucky to have discovered it with little evidence.

After more detailed tests that look at cool cell stuff like quantitative immunoglobulins, kappa and lambda light chains, chromosomal abnormalities, immunohistochemistry, flow cytometry and cytogenetics, (some awesome science, huh) and biopsy and evaluation, the diagnosis was made and I have Stage 1 Multiple Myeloma.

I have good company…Geraldine Ferraro, the first woman Vice Presidential candidate, diagnosed in late 1990s, lived long with the disease while science was still understanding.  She died in 2011, just two days after the publication of a study decoding myeloma tumor genomes.  She was a tireless advocate for research and likely a force behind the vast improvements made in the last 10 years. She is my new hero…a pioneer.

And Tom Brokaw was diagnosed in 2013…after years of debilitating back pain, finally found an answer and is now in remission.  His story is compelling…as told from a voice that has been in my living room for decades…a constant source of history, news and optimism.  His story is of the agonizing truth of the disease and the life shifting reality that is required as cancer shows itself…raw…powerful…and juxtaposed on stories of his incredible experiences…like none other.  ”A Lucky Life Interrupted” – definitely worth a read.

Statistics say Stage 1 has a 4-5 year life expectancy…but that’s history and I’m not buying it!  Han Solo says…” never tell me the odds” – going there is of little use and its good advice.  There is plenty of good news that with today’s drugs, the survivor rates are much greater and the cancer may even become more of a chronic condition rather than a death sentence!  I bet on science…I bet on intellectuals…I bet on those who dedicate their lives to finding a cure…I bet on those who push through…I bet on my brave heart…

So…I have holes in my bones…I have a plan in motion to fill these holes with good plasma to keep me moving for years to come.

Holes are meant to be filled…life creates holes too and our experiences, love, people, hope, strength and courage carefully fill these holes with life’s richest blessings.

Starting now, I’m letting go of those damn D words…death and dying are not welcome here…not now…thoughts of this are still to abstract…and so I am focusing on LIVING.  This new journey is shifting me to focus on the power of the P words…purpose…people…passion…positivity…plans.

And as I reflect on my experience at that piano lesson so many years ago with Donald and Wolfgang…I see the real truth of it…revealing itself again at this moment for a reason.  For me a reminder that it is something far more important than perfection…it’s the reminder that it is really all about the journey…the trials…the passion…the nurturing…the heart wrenching work…the failures and pure joy of progress.  It is hunger and humility…all far more important than the final performance.

And that is exactly what I believe God is more concerned with in each of our lives as well…not just where we are headed but how the journey is developing our character along the way.  So, as I face these new challenges and difficult circumstances, I have a choice about how I respond…I pray for the wisdom to see these trials as a blessing…preparing me for the performance of my life and the grace to accept what I am given.  Trials require patience.  And patience develops character and character produces hope.

Hope…moves me…

And now I shall sit at my piano and purposefully play that Mozart sonata with passion!

One thought on “Trouble with D Words

  1. Thank you dearie dear, kindred spirit, for sharing your heart and soul with great purpose!
    I am praying every day.
    I Love you So!
    Nicolette

    Like

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