In Isolation

I have been thinking lately about how melanoma can isolate people. 

Any life changing event does this to some degree.  Have a baby, win the lottery, lose a job, lose a parent.  It all can isolate. Even though we seldom walk these paths alone, we are, nevertheless, irrevocably changed by the journey, and changed in ways that make us different from people around us.

But melanoma is particularly nasty about this.  This is a nasty, pernicious disease that is relentless in coming back and evading treatments.  But melanoma patients often hear this:  “Oh, melanoma. That’s just skin cancer, right?  They cut it out and you are fine.”

Even the treatments make melanoma patients different.  Chemotherapy has limited impact on this cancer, so some of the classic signs of cancer treatment bypass melanoma patients.  They don’t lose their hair, look pale, walk the hospital halls with IV bag in tow.  It is not unusual for melanoma patients to look perfectly healthy.  Sometimes the appearance matches reality.  I have known Stage IV patients who felt fine, even as they moved closer to succumbing to their disease.  Sometimes the side effects of treatment are less apparent.  Living with flu like symptoms for a year is a horrible experience, but is not something that is readily apparent.

I suppose my thinking of isolation has been sparked by recent conversations about ocular melanoma, or melanoma of the eye.  This is a rare subset of melanoma—only about 2500 cases in the United States a year.  But it is a devastating disease that is universally fatal once metastasis has occurred. Imagine being part of a small subset of an often overlooked disease.  Imagine being the only person you have ever known or even heard about to face this life-threatening illness. 

Seems to me that finding a way to attack the isolation may be as important as finding a way to attack the disease.  “You are not alone” is a line that offers much comfort, but only if it is true.

One of the reasons isolation has been on my mind is this.    In a few days I am proposing to our board of directors that we launch a new initiative for patients who have melanoma of the eye.  This is a very rare form of melanoma, affecting about 2500 people every year.  The program will help build collaboration among researchers, with the aim of accelerating progress toward better treatments.  It will create an online space and some print material through which patients can learn about this cancer and find ways to cover the cost of transportation to one of the very few treatment centers with expertise in melanoma of the eye. 

But it will also create a framework for community.  A place where patients can interact with other patients.  Can share stories, frustrations, successes.  If we can demonstrate that the promise “You are not alone” is real and tangible, then we will have taken another step toward being true to our mission.