Can doctors help patients live fully after a medical diagnosis?

An excerpt from Second Firsts: Live, Laugh, and Love Again.

I spent nearly 4 years in the waiting areas and patient rooms of cancer hospitals. I was not the one with cancer but my husband was. He was diagnosed with stage IV colon cancer.

He was only 31 years old.

I remember the day the general practitioner told us the news. We were escorted to her office. You could tell she was very nervous, almost lost. She started telling us about the different masses that the scans had found. She just started talking about the masses. No prior introduction, preparation or any normal human exchange. There was a 4.5 centimeter mass posterior to the pancreas. Another 2.3 mass left of the pancreas. I looked at my husband. And he looked frozen and very white. I wanted to throw up.

Life was never the same after that. We would take our little girls into the chemotherapy sessions and drive with them back and forth from the hospital while he would carry a bucket on his lap. Those were the years of terror, loneliness and severe trauma. We would visit the oncologist every week, he was nice, caring and the best he could be considering the circumstances. But nobody talked to us about life with cancer. They just talked about cancer treatments and tumor measurements. Nobody mentioned every day living. Going to work. Taking care of kids. Living life in the cancer world is like you are dead.

I always believed that it did not have to be that way. Yes the social worker met with us every week, he was caring and loving. But he mostly listened, while my husband was feeling nauseous from the chemotherapy treatments and not able to really be completely present. It did not have to be so hard on the life part, after all life was the only thing that would heal him.

He died in 2006. I was 34 years old, and for the first time in my life, I realized I really knew nothing about this kind of pain. I already missed him, in the few seconds I had been without him. I remember looking around me, taking in the room. Watching the darkness, the stillness of the moment. Everyone else had left the room to give us the privacy to say good-bye. As I was sitting right next to him, time stopped. I looked at him. And then I took my first breath of this new life.

What I experienced upon my husband’s immediate absence was disbelief. I couldn’t believe I’d never see him again. I was even questioning whether my husband was dead. Though I had studied the stages of grief, I’d never understood grief of this magnitude, and the finality of death. I questioned death in my mind. I could not understand how he could never come back. I was a human being experiencing an inhuman condition.

The pain of losing him was an unbearable force. I felt my heart dying slowly. I sensed my body aging quickly. Worse yet, I went numb. I stopped feeling emotions, and this robbed me of my tears of sadness. I wanted to cry, to purge my sorrow, but I couldn’t. I felt guilty for not being able to cry. I was angry that nobody had told me how bad this was going to feel. Why hadn’t the world prepared me for this agony? He had been dying for more than three years. How come nobody told me that I was to die with him? I was on a roller-coaster ride that wouldn’t end, and I had no idea how to get off.

In the last days of his life he said he wished he did not work so hard. He wished he laughed out loud more and worried about the cancer less. He wished so many things. If only we had life appointments with the doctors. Instead of having cancer appointments. If only they asked about living instead of talking about how much longer we had left.

Would he have lived longer? Possibly not. Would he have found it easier to say goodbye? No. Would we have laughed out loud more? You bet we would. Would we have loved more? Maybe so.

But in the end of it all we would have focused more about life than about death. More about living, than dying. We had one of the best doctors we could have had but he was not trained to talk about life. He was not trained to talk about reentering life after a medical diagnosis. You might ask who’s job is that anyway? Social workers? Psychologists? Or therapists.

It could not possibly be the doctor’s job.

Or could it?