Mets Day 656 - How long have I got left?

Yesterday I saw an opinion piece in the New York Times titled How Long Have I Got Left?  It's well worth reading.  Go ahead, click on the link, read it, then come back.

If you don't want to bother with reading it, it's written by a 36 year old neurosurgeon named Paul Kalanithi who was diagnosed with lung cancer.  He noted his professional detachment when looking at other similar cases, and contrasted it with his desire to know how long he had to live.  He spoke about survival curves, how they were a historical snapshot of others with the disease, how useless they were in making patient-specific projections, and how his own oncologist refused to tell him how long he had left, because no one could say.  He reflected on the desire for certainty, and how such knowledge would help him decide how to live his life.  Without such knowledge, he learned to live by the words of Samuel Beckett: "I can't go on. I'll go on."

Kalanthi's op ed piece reminded me of my ongoing struggle to decide what I should do with my remaining days.  I reflected how, for a short period of time, I had wished I knew exactly how long I had to live.  Even before I learned that my cancer had metastasized, I knew that, if it did, the odds of long-term survival (e.g., more than 5 years) were less than 10%.  I also had studied the Kaplan-Meier curves for metastatic bladder cancer.  A good summary of the studies with their respective curves can be found in the National Cancer Center's PDQ for Stage IV Bladder Cancer.  Other examples can be found in various journals, such as Prognosis of muscle-invasive bladder cancer: difference between primary and progressive tumours and implications for therapy and Long-Term Survival Results of a Randomized Trial Comparing GemCis, With MVAC in Patients With Bladder Cancer.

After I reviewed this data in April 2012, I understood that no one would be able to tell me how long I had to live.  I understood that doctors simply did not have the ability to provide a forward-looking, patient-specific prediction.  The survival curves were nothing more than reference points.  I accepted the limitations of today's doctors, and also accepted that there is no cure for mets BC.  Treatment is focused solely upon prolonging life, while balancing the harshness of the palliative therapies against the potential benefit of buying a few more months.

My acceptance of things that I cannot control has brought tremendous peace to me.  I can no better stop my cancer than I can stop the flow of the tides.  With that acceptance, I have learned to live each day for what it is; giving thanks for each morning; enjoying what I can during the day; and giving thanks when I lay down to sleep. 

While reading Kalanithi's piece, I thought of Paul Atredies, the protaganist from Frank Herbert's Dune Trilogy, who became prescient and knew all that was going to happen to everyone in the universe, including himself.  His certainty of the future created a sense of despair from which he sought to escape.  Those who seek a perfect knowledge of the future should beware of obtaining what they seek.

I am grateful that my mortality is shrouded in ambiguity.  I do not want to know how long I will live, or the choices I will make next week or next month.  My agency is defined by the freedom to choose, to define my own path, guided by my commitments to family, friends, and faith.  Unlike Kalanithi (and especially Beckett), I have not felt that "I can't go on."  The joyous mystery of life, and of death, lies in the fact that what happens next is unknown.