Book review of Persevere: A Life with Cancer, by Lisa Bonchek Adams.
This book is a gem.
Lisa Bonchek Adams was an atheist, a realist, and a talented writer and poet. Before her recent death from breast cancer, she shared her experience and her insights with the world in the form of blogs and poems. Her family compiled her writings and published this delightful, sad, inspiring book. For me, the best part is her advice about how not to talk to people with cancer.
She was well served by her doctors. After a double mastectomy and chemotherapy, she passed the 5-year survival mark but never considered herself “cured.” She knew her type of cancer could recur after 7, 12, or even 15 years. And it did. It was widely metastatic, with no chance of cure. She was treated with a succession of palliative chemotherapies, some of them experimental. Her oncologists involved her in treatment decisions, trying to find the sweet spot where there was therapeutic efficacy with manageable side effects. With their help, she lived longer and had a better quality of life than she would have otherwise. She had nothing but praise for her doctors, their professionalism, their compassion, and their unwavering support.
When a chemotherapy “failed,” she realized that doesn’t mean it didn’t work. It may have done what it was supposed to do: reduce the number of cancer cells and slow progression of the disease for a matter of weeks or months. It worked, just not for as long as she would have liked.
She believed honesty is always the best policy. Don’t try to hide a cancer diagnosis from children; tell them the truth in an age-appropriate way that they can understand. Let their teachers and coaches know what is going on at home.
What not to say
People say a lot of stupid things to patients with cancer. They don’t really know what to say, and they mean well, but that’s not enough.
Don’t say it’s possible to think your way out of cancer. It isn’t. She rejects the idea that attitude matters, because it implies that if you relapse or die, it is your fault.
Don’t give unwanted advice. Listening does not entail giving advice. Advice can miss the mark and leave the person feeling further misunderstood. It’s a good idea to clarify, “Do you want me to just listen, or do you want my advice?”
Don’t tell me about people you know who survived/didn’t survive, or who had bad or good experiences with chemotherapy; that doesn’t mean I will or won’t. Each case is different.
Don’t make promises you can’t keep. No, everything is not going to be OK.
Don’t say, “Everything happens for a reason” or “God doesn’t give you more than you can handle.” I don’t believe that, and it only makes me feel you don’t understand what I’m going through.
Don’t say “I’m praying for you” or “I’m hoping for a miracle.” To atheists, that just means you are out of touch with reality.
Don’t say cancer is a gift. It’s an unfortunate twist of fate, and you try to make the best of it. If something good comes out of your struggle, cancer doesn’t deserve the credit.
Don’t recommend alternative cancer cures. Don’t say there must be something out there that will cure the cancer. That’s a wish, not a reality; and the people who say that just want to reassure themselves that bad things won’t happen to them. The oncologists have up-to-date scientific knowledge; if there were any evidence that alternative treatments like coffee enemas or herbs or diet could cure cancer, they would know and would use them. Grasping at straws only leads to false hope and disappointment. She says, “I do not appeal to the universe to change what is… I turn to research. I turn to science. I turn to determination and hope which are the last things I can cling to, fingertip by fingertip, like the cat on that iconic poster that says ’Hang on, baby.’”
Beware spin and hype. It made her angry when people in breast cancer care talked about how “close” we are to personalized, individualized treatments and even to cures. Progress is being made, but we are not “close” by any means. Cancer is complicated, and the interactions are complex. There are more than 30 subtypes of breast cancer, and even those subtypes don’t always respond alike to treatments.
In advanced cancer, things will not get better; the patient will never return to “normal.” Don’t suggest otherwise.
Be careful about compliments. Saying “you look well” may be interpreted as denying that you have a terminal illness.
What you can do
Instead of “how are you?” ask if this has been a good or bad day or week for them.
Instead of “Let me know if there’s anything I can do for you,” make a specific offer to pick up things for them at the store when you are running errands, or take the patient’s children for a play date, or offer to do something on the patient’s to-do list.
Handwritten notes and saying “My thoughts are with you” are always appreciated.
Being supportive does not necessarily mean keeping the patient’s spirits up; maybe what she needs is support for how she is feeling.
Say you are sorry this is happening. Say, “I care about you and will be here for you.”
“I don’t believe there is a god listening, and I don’t believe cancer gives a damn about it all.”
The phrase “It’s not curable but it’s treatable” is important to teach and use.
Rather than “cured” or cancer-free,” it’s more accurate to say NED (no evidence of disease).
Having a plan is empowering. Small steps, everyday tasks can give a sense of control. I load the dishwasher; because I can. I will savor the things I can do today.
Bad news is easier to deal with than uncertainty. Hope for the best; prepare for the worst.
“I wish I had been more accepting of help in the early days.”
We don’t like to talk about death. People don’t know what to say when someone has died. But “people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.”
If a person wants to talk about death, don’t change the subject.
“Make the most of this day. Whatever that means to you, whatever you can do, no matter how small it seems.” Mundane things can be sweet when viewed in a different light.
Part of one of her poems:
Some things just are.
Some things just happen, even when you do all you can.
I have accepted this jagged truth all along.
But I think some people never do.
Palliative care teams can be very helpful; don’t wait too long to accept their help.
Conclusion: Words of wisdom
Her final advice for everyone was, “Go out and find beauty in something small today: a leaf, the sky, a hug, a kind word or deed. Go do it. For me. Because you can.”
Lisa Bonachek Adams has given us a great example of a rational, secular approach to dealing with cancer. She confronted reality unflinchingly and found practical ways to cope. She had no need for superstitions, myths, or imaginary friends. Reality can be harsh, but it has the advantage of being real. Avoiding it is likely to result in more suffering in the end.
There is much wisdom in these pages. I wish everyone who has cancer and everyone who knows someone with cancer could read it.
This article was originally published in Free Inquiry magazine.