'God's Away on Business': Patient Advocacy

Easter flowers: A gift to me from Maryann's husband

Goddamn there’s always such
a big temptation
To be good, To be good
There’s always free cheddar in
a mousetrap, baby
It’s a deal, it’s a deal
God’s away, God’s away, God’s away
On Business. Business. ~Tom Waits

I’ve been thinking about my good friend Maryann who died last January of lung cancer. I recall her sitting across from me on my back deck the previous August talking about the diagnosis and what to do. She spoke of her frustrations with doctors, her disgust with the ordeal. Keep in mind she was in good spirits, nevertheless. She was a strong woman.

I felt compassion and a great need to support her in some way. I wanted so much to help them (both she and her husband) through this time. I said as much that afternoon. I said, ‘If there’s anything I can do.’

While she was hospitalized after her first surgery, I helped as much as I could maintaining her garden and researching information on the web. One evening her husband asked if I would be interested in becoming his wife’s advocate. Neither one of us was really sure what that would mean. But in the beginning it meant being her friend through this. Which of course I was.

Over the course of time, I rode in the back of the car as the two of them drove to hospitals and doctors’ offices. In the beginning we traveled for chemo, later for radiation and later still hospice. In every case a doctor would ask who I was and when they told them I was both their friend and Maryann’s advocate, the doctor would shake my hand and talk to me as he would a family member.

I always arrived with notecards and pen filled with my questions, their questions. Later in the morning I filled the cards with the doctor’s answers and comments.

Every morning from the back of the car I’d start with the questions ‘Anything new? Anything we need to ask? Anything I don’t know about?Any events we wanted to mention?’

They were both quiet then her husband would express some concerns while Maryann remained silent. So I would ask Maryann specifically what has been bothering her the most, what issues, what frustrations.

Over the course of time I would show up with research article references from the web. I wasn’t a doctor, of course. I just wanted to understand the treatments and look around for the possibility of something new or untried. The doctors never minded. They were always patient. And once I found a treatment article that actually determined a way to move forward. I was nervous about it because that was too much for me to take on. But the doctor said they had been waiting for that very article.

I always felt myself a member of the treatment team. But I want to backtrack here. Go back to the time in the car when Maryann said she wasn’t so sure she wanted treatment. Her husband and I were silent. That was our first visit to the chemo doc. And the first thing I asked the doc out loud? Is treatment really worth the side effects in this case. He gave us the stats and said he felt, yes, she would benefit from treatment.

Home. On my own. Thinking to myself: if I say anything I alter the course of treatment. I would influence where we go. I thought long and hard about lung cancer. Generally 6 months after diagnosis. And Maryann never smoked. I won’t give you details. I don’t need you to second guess the treatment options.

But I asked a close friend. We have several who are docs. He spoke openly about hope and hope’s influence on treatment – how spectacular loss of hope can be. He spoke of families and how they feel they need to be the raison d’être and want to feel their love is enough to keep someone going. He said life is worth something. It is certainly worth fighting for.

This is how her husband felt, too. But I was Maryann’s advocate. What should I do or say. I was hoping I would have to say nothing. But that wouldn’t happen as we plopped down inside the car on our way again to the doctor’s office. OK, Maryann said. How do you feel about it? Treatment?

But I couldn’t be the reason to give up. I couldn’t be. I said what about your children and grandchildren and the people who love you. Is it worth a gander? Is it true that if we decide in our minds it’s useless it is. So the contrary might be true?

But, I said, I’m not comfortable. How do you feel? I’m with you no matter what. And she said this is how everyone she had spoken to answered her. Go for, it. And she did.

As it turned out, the cancer had spread to her brain. And after radiation to the brain – she stroked. Three weeks later in hospice, she died.

That was this time last year. And yet, despite all of the bad news along the way both she and her husband gave me hugs and gifts and took me for breakfasts and lunches and spoke gratitude. I ask myself why. I couldn’t save her. I didn’t deserve any gratitude.

A year later I now realize it wasn’t my job to save her. It was my job to share with her / them. My job through friendship to lighten the load. I was another pair of eyes and ears. I was someone to talk to, a distancer, a friend inside the dark circle who made the dark circle still friendly. I was a neighbor in a place where no one else knew them. I allowed them to feel familiar.

I didn’t go to the funeral. I stayed at the house preparing things and waiting for folks who did attend the funeral to arrive for lunch. That way the family was able to attend. It wasn’t for weeks after that my husband insisted he take me to the cemetery to see the grave. It was Valentine’s Day. There was a steamy rose over the grave – the snow melted about it. I saw what I assumed were her husband’s footsteps leading up to the rose. Of course. He left it.

The rose looked so lonely. And silent. I cried for the first time. In the end it wasn’t, I know this now, my job to save her. It was as it was in the beginning when we first began the journey, my job to be her friend.

Have you had experiences similar to this, advocacy experiences of any type you’d like to share? I would love to hear from you.

Thanks, Barb