A few months before my 29th birthday, I was diagnosed with Ewing's sarcoma—a rare cancer that mostly occurs in boys and young men between 10 and 20 years old.  Despite being an outlier (a woman pushing 30) I was extended the privileges of being treated in a pediatric setting, rather than in adult care, as the experts in this rare disease are pediatric oncologists.  At the time I was living in New York City and was treated in the Pediatric Day Hospital at Memorial Sloan-Kettering Cancer Center.  (And I learned through experience that the stardard of care in kids' cancer units is far superior to that of any adult medical care.)

 

A year after finishing my treatment and declared to have No Evidence of Disease (N.E.D.), I met and developed a relationship with a two-time survivor of Hodgkin’s lymphoma.  Three months into our relationship, he was diagnosed with another recurrence.  I moved to Chicago to help him undergo chemo while he completed his Master’s degree at the University of Chicago, and in preparation for a postgraduate bone marrow transplant in Manhattan.

 

Meanwhile, I was managing my long-term post-treatment oncology care.  Shortly after my partner had his bone marrow transplant, I experienced an acute mental health episode, resulting in a diagnosis of bipolar disorder, and later in my adulthood also generalized anxiety and obsessive-compulsive disorders.  I’ve learned to manage my health, I need medical professionals who take my mental health into account as part of my physical health.  And I’ve gotten really good at building my village.

 

Now in my 40s, I have become the primary caregiver to my elderly father with dementia while also managing my mother’s care in an assisted living memory care unit.  Dually experiencing the changing dynamics of our parent-child relationships has been and is curious, informative and heartbreaking.  It has had a transformational effect on me and a big push for me to leave my 9-5 job and start doing what I believe is my life’s work:  walking with folks going through health and health-related challenges to smooth the road where I can and navigate the harder stretches.  

At times in my healthcare experience I have felt overwhelmed and helpless.  I’ve learned over and over that focusing on what I can do helps to temper  those feelings and give me ways to move forward.  

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