When the Black Clouds Roll In by Angela DeBernardo

I’m sure she didn’t expect more than antibiotics when she went to the ER last month.  It was her second visit.  At her first a few weeks earlier, she had been diagnosed with a UTI.  Now, she had lower abdominal pain that wouldn’t go away.  This time, they pulled out the big guns – she got a CT and the worst news of her young life.  In the next few weeks, she would have surgery, receive two types of chemotherapy and travel in and out of the ICU.  At the month’s end, she was dead at 25.  Her illness and her death have shaken our home, but we’ve never met.  She was my husband’s patient.

I remember a conversation over coffee with my husband during medical school.  He was considering specialties in that “What if” way that lets you dream.  Plastic surgery?  You know…the good kind that does reconstructions…not cosmetic, of course.  Infectious disease?  It would be cool to swoop in and solve some mysterious case, wouldn’t it?  There were so many possibilities.  The only one that held zero appeal for me was oncology.  Yuck.  How could you deal with that, day in and day out?

Surprisingly, my husband didn’t agree.  He thought it was honorable – which it is.  He has always been a better person than I. Oncology was one of the fields I knew I could never handle.  I’m too pessimistic.  I worry.  I see the bad outcome.  My husband is the picture of optimism.  He’s hopeful, bright and funny.  He’s the guy you want next to you when the Bolivian Army is staring you down.  He’s the Sundance Kid of medicine.

I suppose it shouldn’t have surprised me that his training led him to work with cancer patients.  He’s a gynecologic oncologist.  He prides himself on the fact that his specialty handles every aspect of a patient’s care – surgery, chemo, and radiation.   No shuffling off to another office for his people.  He preaches “ownership” of patients to his residents and gets miffed when they don’t seem to care enough.  He gives out his cell phone number to patients and families and tells them to call anytime.  They do for matters both big and small, and I’m certain that their experience is the better for it. You’ve heard of attachment parenting?  My husband practices attachment medicine.

Of course, attachment is dangerous when you are working with terminal patients.  During residency and fellowship, there were dark days when favorite patients took a turn for the worse.  I went through a book buying frenzy on Amazon trying to find him some key to deal with the depression.  I have the collected works of Elizabeth Kubler-Ross on my bookshelf.   On Death and Dying may be the seminal work on handling loss, but I’m the only one in this house that’s read it.

His mentors in training have all handled their worst cases in different ways.  Some have become more nurturing near the end; others have distanced themselves from the doomed. My husband trained at JHU with a brilliant surgeon named Freidrich Montz.  He was featured in a Discovery channel program called Hopkins 24/7.  In his episode, there is a scene in which he tells a patient that there are no more options left.  Nothing can be done.  It’s difficult to watch.  As he walks away, he tells his residents that you have to move on, fight the fights you can win.

To be honest, when I first watched the episode I thought he was cold.  Walk away?  What?!  Just give up??  Now I get it.  There is a line.  At some point, you have to let go.  You have to acknowledge that you have no control or no ability to help this person.   Dr. Montz passed away when my husband was in fellowship.  I wish he were here now to share his insight.  Few physicians are comfortable discussing this, much less on national television.  I’m certain that the guidance of more experienced physicians would be a comfort to young doctors.

My husband has had to travel this road on his own.  Handling the loss of patients is not taught in medical training, and it is a hard lesson to learn.  I’ve found that all my efforts to help have been in vain.  There is no book on helping others deal with loss.  We each handle that in our own way and what works for me may not work for my husband.  I have learned that I need to step back from the situation and not take it personally.  It is simply another way that the choice of a medical career affects our daily life.

Sometimes, when my husband is crabby or distracted it’s because things are bad at the office.  Real bad.  You can hardly blame him for getting caught up in the daily drama that is his life’s work.  I can remind him that he has done his best.  I can try to distract him with a funny movie.  I can leave him alone to think.  I can offer him a glass of wine and a back rub.  I’m sure he appreciates my efforts, but in the morning he still has to go in and face that sick patient.  He still has to come to terms with his inability to help her.  He has to face her family.  He has to admit defeat.

Although I cannot take away the sting of his loss, I know that our family life recharges his energies.  A weekend walk in the woods with the kids brings back his gentle nature.  A late night dinner and a silly movie restores his laughter.  I can keep the kids out from underfoot on a Saturday morning and let him catch up on his sleep.  I can give him time to work it out for himself.   It is the small things that make a difference.

When my husband’s patient died, he didn’t tell me.  One day, he had more energy.  He was more engaged at home.  He wasn’t constantly checking his cell phone for messages.  He didn’t seem so angry.   I found her obituary in our local paper the next morning.  Looking at her picture, I felt a fraction of the grief my husband had been experiencing for weeks on a daily basis.  How can life be so fragile?  How can we be so powerless?

There is a sad truth to life learned all too well when practicing medicine.  Sometimes you can’t win.  Sometimes the Bolivian Army is waiting on the other side of the door.  Unfortunately, as a physician you have to soldier on even after you’ve learned that lesson.  You have to face each new patient with a renewed sense of hope.  Some find that in faith.  Others find it in scientific knowledge.  Many find it through the support of their families.