The Compassion of Caregivers

Empathy, presence, witness

Besides memoirs written by those who have cancer, there are books written by those who take care of those with cancer — the spouses, families, and friends. This is not surprising because cancer is hard on them, too. While caregivers may be more objective about the medical procedures, their accounts can also be heart-rending because they include the anguish of being unable to stop the pain their loved one is going through. Bearing witness to the suffering of others takes its own courage.

Am I My BMI?

 

The BMI gets under my skin.

I have a love/hate relationship with the BMI. Is “hate” too strong a word? There is no love. At every meeting with my oncologist, the notice flashes on the screen – “You’re still overweight, Bozo!” 

So I do seriously dislike the BMI because I’m never in the good zone. I diet, exercise, skimp, and have said “no” to dessert so often that I feel guilty whenever I actually eat one.

Has Cancer Made You Shallow?

 

Miriam Engelberg, breast cancer, graphic memoir

This year marks the 20th anniversary of the publication of Cancer Made Me a Shallower Person: A Memoir in Comics, 2006, by Miriam Engelberg.

Suzanne Shea cued me in to this gem of a cancer memoir. It recounts the cancer journey of Miriam from symptoms to diagnosis of breast cancer to chemo to metastatic recurrence. What makes this memoir different is that the journey is told in cartoons. It’s a graphic memoir that brings humor into the presentation, and humor with cancer helps us keep our emotions from hardening.

Be a Bird Feeder

Inspiration

Inspiration is a bird feeder. Every day we have to fill it up for it to be helpful.

Having cancer is a drag much of the time. We’re tired from the treatments, tired from trying to guess what is going to happen next, and we may not feel great, so we stay home in our sweltering, sweaty pot of woes so that we don’t bother anyone with our troubles.

We can all use a spark of something to liven up our day. It helps to get outside of the house for a time to remind us that the world still exists and to give us something to look forward to, even if we just walk around the block.

When Do We Become Cancer Survivors?

 

Survivor, surviving, or treading water. Which am I? Am I a cancer survivor or still a cancer patient? They are completely different orientations with different mindsets. The treatments and therapies designed to kill my cancer are over, but it’s Schrödinger’s Box — we don’t know if all of my cancer is dead or alive until we look inside my “box.” My doctors won’t look until my PSA does something wonky. It’s a calculated unknown. Dormant cancer cells can be nudged awake by matters like metabolic changes, and what was “dead” is now “alive.” 

Some people think of themselves as survivors every day they’re alive. This is a prudent way to live. If we are never going to know for sure that all of our cancer is gone, why not focus on living as well as we can, instead of twisting ourselves into worry pretzels over everything that might go wrong?

Patients Shouldn't Have To Ask

 

Let me preface my post by saying that all of my doctors are compassionate, knowledgeable, and caring people. 

I scheduled an appointment with my urologist, the first one with him since my cancer treatments ended, the anti-hormone drug was completely out of my system, and the temporary side effects of radiation were gone. This will be a reality check about what changes in my body I may have to live with. My urologist asks – “What questions do you have?”

I think there is a better approach, and I think it’s important because my questions are limited to what I know to ask about. I’d rather be entertained by his fishing expedition even if I don’t know why he’s asking about certain things. I figure they’re diagnostic.

Chew the Gum

 

It’s the pain, don’t cha know

Anne Lamott tells the story of having her tonsils taken out as an adult. After two weeks, her prescription for painkillers ran out. She called the doctor’s office to get a new prescription, and the nurse said No. The nurse told her to chew gum vigorously, which is the last thing that Lamott wanted to do with a painful throat. 

Journaling Into the Heart of Your Cancer

 

Anna Quindlen

Going through cancer treatments is traumatic. If you have cancer, there are days when you bare-knuckle your way through with clenched teeth and a determined “Don’t get in my way” stare. What helps us cope is keeping a journal, writing down what is going on, what our doctors are saying, what we are thinking, and how we are physically and emotionally doing with all of this.

Riffs on Cancer

 and other taboo subjects

Those who have cancer don’t need words of sympathy. They need empathy, hugs, and presence.

When we have cancer, we no longer rush about in our daily lives trying to maximize the work we get done, to get from Point A to Point Z as quickly as possible. We linger with others, ponder, sit, reflect with a second cup of coffee. Ponder some more. The destination no longer seems as important as what we are experiencing on the journey, and our journey now includes cancer. Our goal is to be present to this moment and take care of others who are suffering the best we can. 

Children and Cancer

Carmen Monge’s picture book, Can-Can & the Adventure of Ming Island shows adults how to explain what is going on to a young child who gets cancer. It shares ideas with families for helping their children navigate through treatments, and it nurtures empathy and hope.

We know that children get cancer. It’s in the news often enough. Every time we hear of another child with cancer, it troubles our hearts and makes us question the goodness of the universe. I know, goodness isn’t a concern of the universe; nor is fairness, but it’s still how I react. When I was undergoing radiation, the therapists put cutouts of different animals on the cherry tree painted on the ceiling to give kids something to discover as they go through treatments.

Cancer Patients Are Not Cars

 The Gift of Narrative Medicine 

Courses on narrative medicine are offered in some premed programs and medical schools. They are an important addition to the scientific coursework because they remind future doctors and nurses that they, and their patients, are human beings who have emotions that need to be tended to. The courses train medical people how to listen and interpret what patients say, as well as notice when patients are reluctant to share something. These courses aren’t offered at every medical school, and generally there is only one course. But it creates an awareness of the gift of listening that strengthens as the years go on.

The Emotions of Medical Folk

Where It Hurts: Dispatches from the Emotional Frontlines of Medicine, 2026, ed. by Donna Bulseco, Intima Journal.

What I love about this book, among many reasons, is that it shares the emotions of the people who cope with stress, fatigue, and burnout as they care for people, day after day, who are seriously ill. The accounts cover the gamut of care by doctors, nurses, EMTs, and therapists who speak of the emotional toll on them, especially when they have to deliver bad news. This is a side of our doctors and nurses that we seldom see.

How Did I Get Cancer?

 Genetic Testing

The same question dogs everyone who gets cancer: Where did it come from? It’s not a critical question because we already have cancer, and our focus is on getting rid of it. 

Yet I wanted to know. If my cancer came from an outside source and is environmentally-caused, like exposure to a lawn herbicide or a crop pesticide, which seems to be a problem in agricultural areas, especially in Iowa and Illinois, then I want to stay away from it. Were there industrial carcinogens in my drinking water from fracking? Maybe a pathogen snuck in through a cut in my skin.

Going To The Monastery To Face Cancer

 

I am delighted that my new essay was published today by the Chautauqua Journal. 

It’s called “Unmasking In the Monastery.” This makes me so happy!

https://www.chautauquajournal.com/post/unmasking-in-the-monastery

Happy Holy Fools Day! (I’m serious.)

Mark

Wild Cancer

 

Rick Lamplugh’s book, The Wilds of Cancer, is the only memoir I’ve found about prostate cancer. He shares his thoughts and emotions as he makes every decision from diagnosis through treatments, and what he struggles with along the way. My thanks to Christina Eisenberg for telling me about it.

While I’ve read quite a few memoirs by women about their breast or ovarian cancers, I haven’t found many men who were willing to write even an essay about their prostate cancer, and I think the reason is that prostate cancer hits men where their pride resides.

How Are We Then To Act?

 

Katharine Smyth, expectations and reality

When we get cancer, we think we have to act like the cancer patients in the movies. People who have no experience with cancer also expect us to act like these stereotyped, sanitized, devoid-of-personality presentations. Don’t act when you have cancer. Let yourself experience what you are feeling and thinking. 

Biopsies Don't Tickle

 

If you have cancer, you’ve likely had a biopsy, and it’s not a pleasant experience. It probably made you squirm. There is discomfort during the procedure, and pain afterwards. Doctors do biopsies for breast, lung, prostate, liver, colon, bone marrow, and other cancers. Doctors go in through the back, the abdomen, the groin. Techniques vary from using needles to punches to surgery. I’ve had two biopsies – a prostate biopsy, and one when they drilled into my pelvic bone to check out a spot that lit up on a scan.

Is Cancer Still a Metaphor For Anything?

Susan Sontag - breast, uterine, leukemia cancers

 When the radio said that Susan Sontag died on this day in 2004, I wrote her death date on my calendar so that every year I could remember her, as I do with other dead people who’ve influenced my life. Her birth date was also given, but I didn’t write that down. This struck me as curious. Would I rather grieve her loss or celebrate her birth and coming alive in her writings? One date affirms the beginnings of her creativity; the other boards her in with nails of sorrow. 

Turning Cancer Into Art

 

Tony Hoagland, pancreatic cancer

Tony Hoagland died of Stage 4 pancreatic cancer on October 23, 2018. He knew he had the cancer for only two years because this kind is hard to diagnose before it becomes terminal. Pancreatic cancer is potentially curable if the cancer is caught early, is on the head of the pancreas, and it hasn’t spread, then it can be surgically removed, followed by a course of chemotherapy.

Music, Cancer, and Creativity

 

Franz Liszt and grief

As we get older, more of our friends and family pass away. And while we expect this, it’s still a shock. Some die from cancer, some from old age or accidents. Too many die young, we think, before their time. Yet a life of attention and service to others is not diminished by the shortness of time, nor does the length of a life bestow any particular honor.

Not realizing how fragile life is, and how quickly death can come, we can be so unnerved by an unexpected death that we wake up every morning fearing that someone else we love has died. And every strange ache, every cough and tick of our body, can make us fear that something is seriously wrong with us and we’re next to go.