Marked by Myeloma

Many people say, “everything happens for a reason.”  But many others say, “everything is random.”  Perhaps these two ways of looking at events in our lives are not contradictory, but complementary.  An event may be random but have such profound effects on the trajectory of our life that we cannot imagine things being different.  Those events can give meaning to our lives.  They are the reason we are who we are.

A Random Occurrence

In late April I was diagnosed with multiple myeloma, a nasty blood cancer that starts when malfunctioning plasma cells in the bone marrow begin to proliferate.  In my case I had been having minor aches and strains, particularly in my left hip, that physical therapy and massage did not resolve.  So on my 72^nd birthday (April 18) I met with an orthopedist in Colorado.  He said my hips looked healthy and he diagnosed the injury as a left adductor tendon tear.  But as he pored over the X-ray, he noticed some tiny spots on the bone which he could not explain – he said I should probably get a second opinion.  

Nine days later, back in Boston, I had a follow-up CT scan in the morning and my wife and I met with our PCP, Dr. Kimberly Parks, that afternoon.  She gave us the diagnosis.  Multiple Myeloma.  In that instant, my life, and my identity, was irrevocably changed.   I was no longer a relatively fit and healthy, 72-year-old man.   I was now seriously impaired — the target of a potentially deadly blood cancer, one originating in my own body.

The next few days were a whirlwind, involving a temporary housing relocation, innumerable scans and tests, meetings with two oncology teams, adjustment to a variety of medications, and the challenge of learning to live out of a hotel room.  My disease was described as treatable, but not curable.  It was also progressing very fast.  I was told I was at risk for renal failure and spontaneous fracture.  There was concern that I would need surgery to deal with spinal cord compression at T2.  Fortunately, these horrors did not materialize.

Weekly chemotherapy sessions began at Mass General Hospital on May 9^th.  During this period my physical mobility continued to decline, and other symptoms began to appear.  A rapid accumulation of fluid (edema) revealed another negative aspect of my specific disease – a buildup of amyloid plaque.  That accumulation had permanently damaged my heart, a condition diagnosed as congestive heart failure.  Fortunately, Dr. Parks had specialized in heart heath and was already on my medical team.  Under the diuretics and low sodium she prescribed, I dropped 40 pounds in three weeks. She also explained that congestive heart failure was another treatable but not curable condition. 

I will carry both the cancer and heart disease, along with the drugs and the health habits that will keep me alive, for the rest of my life.

This was a terrible thing to happen. The doctors have all assured me that the disease was not the result of my past behavior or habits – and probably not even my genes.  Multiple myeloma, like many cancers, cannot be attributed to known causal factors.  All humans have mutated cells in their body, created as the vast billions of old cells die and new cells are made – including mutated plasma cells in bone marrow.  But those mutations lead to disease for only a  very small number of individuals.  There is no definite cause, just a probability that the disease will strike.  I’d call that random.

What Happened Next

What happened after my diagnosis was remarkable.  My wife orchestrated a mobilization of resources and people to provide care and comfort to me, and also to support her, in this very difficult time.  We no longer have a home in the Boston area, so we had to move into the Marriott Residence Inn in Concord MA.  Our hotel room was quickly transformed into a home.  Family members and friends came to help in rotating shifts – staying with me and walking me in the hotel parking lot, bringing in supplies, driving us to and taking notes at appointments, organizing the growing number of medicines, cooking meals, doing errands, and always offering their love and support.  

At the same time, the medical team at MGH, under the leadership of Dr. Noopur Raje, mobilized rapidly and guided me into a chemotherapy treatment program grounded on the very latest of medical science.  Twenty years ago, the diagnosis of Multiple Myeloma was a death sentence – but 21^st century advances have identified a growing number of treatment options offering a probability for long term remission with high quality of life.  I began weekly treatment with a quad chemo regime of Daratumumab, Velcade, Revlimid and Dexamethasone, along with dozens of pills for pain, side effects (nausea, constipation, fatigue, insomnia, mouth sores) and immune support.  

As I write this three months later, the disease has been suppressed: my hematology and chemistry markers are all in normal ranges.  The worst of the symptoms and side effects have abated.  For the most part, I can resume normal activities and enjoy the wonderful life that my wife and I share.  This is a miracle.  

Yet I also know that the full story is still being written.  My conditions are not curable.  They are also not static.  Each day is a new day.  Each blood test provides a new set of data points on the status of the cancer within me.   Each visit to a doctor brings the chance that something will be revealed.  This uncertainty is uncomfortable.  But it can also be an inspiration to make the most of each new day.

A Personal Reflection

The outpouring of love and concern, the offers of help, sometimes from complete strangers, and the compassion of the medical team, was a powerful elixir for my healing body and wounded soul.  In the months since the diagnosis, I feel more supported, more cared for and more loved than ever before.  The experience also opened many doors.  Old ties of friendship have been renewed, new friendships have been created, and the bonds with and among our extended family and close friends have grown stronger and deeper.  From this terrible experience, many blessings have flowed.

I am also indebted to the medical science practitioners who have worked so hard for so many years to make this possible.  It is critically important as well to remember the patients.  I am filled with sadness and grief for the huge number of people who suffered and most often died from this disease in the past.  Their sacrifice provided the baseline experience upon which medical science was able to advance.

Looking back, it now seems that the random, and very bad, experience of getting Multiple Myeloma, provided both challenges and blessings.  The challenges had to be suffered.  The blessings had to be received.  With the help of my wife especially, and the many family, friends and others who stepped forward, I was able to manage the suffering in my body and lean into the blessings with my heart.  The person I am today is different from the person I was before the diagnosis, or from the person I would have been without it.  

This is who I am today.  I am marked by myeloma, a fact I acknowledge by the “multiple myeloma” burgundy polish on my left big toe.  I am sad about what has been lost, but grateful for what I have gained.   My life has been changed by the lessons learned and the human connections that have been shared.  I cannot imagine things being different.  These events have given meaning to my life.  They are the reason I am who I am today.

I’d say — this is not random.  

Share on Facebook

Tweet

Follow us