Monday, September 18, 2017

When a Woman Writes About Her Life

“If a woman writes about herself, she’s a narcissist. If a man does the same thing, he’s describing the human condition.”
--Emily Gould

Emily Gould’s book, “And the Heart Says Whatever” is a collection of essays about what it’s like to be her—and by showing us her one life we learn a lot about –not just other lives, but about how to, maybe, think about our own lives.

She also said--and I love this, “When women are honest about their experiences, it’s destabilizing.”

 Right? 

As I continue to write about cancer and caregiving and love and sex, and about work and clothes and money and fear, I swing between trying to be helpful and being both destabilized and destabilizing. 
So, I also ask: Am I writing one woman’s story or am I describing the human condition?

In some ways, I think it’s not my job to decide, but rather that is yours to discern. As we learn from Alanon, “Take what you like and leave the rest.” My hope—and my prayer—is that by writing about my fears and flaws I can offer you a way to deal here in CancerLand.

Wednesday, September 6, 2017

The Literature of Caregiving: Tom Lubbock and Marion Coultis

It is not often that we have both patient and caregiver as extraordinary writers. And while often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death. 

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he
died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, and arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he is articulating what language means and what it means when a writer is losing language. You would think: “too morbid”. But no.

These books, Tom’s and Marion’s, are slim and carefully crafted. These two are such fine
writers so I encourage you to read both, together and side by side. Do you see how each one describes the same day? What does it look like to him? To her? How they see the world includes what they see, as they see each other, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said, ‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands.”

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love. And this thing that we all do until death—we try to put life into words.

Saturday, September 2, 2017

Grow Your Own Mother

Last week on vacation I read, “Will I Ever Be Good Enough?” by Karyl McBride, PhD. It is about healing and growth for daughters of narcissistic mothers. McBride writes about the persistent feeling of never being good enough and the invisibility that accrue to women whose mothers were on the continuum from self-absorbed to full-blown narcissist.

Part of the recovery that McBride suggests is developing an internal mother who is all the things that one’s real mother was not able to be. 


So, at the beach I began to envision what that new mother of mine might be like. I began to imagine borrowing parts of other women—and some men—to grow my own mother.

To be fair I did include many of the great qualities of my own real Mom: passion, curiosity, charity, physical energy and humor. But, as I walked the beach, I began to name the people who I would include as I grow my internal mother.

I added in bits of Georgia O’Keefe, May Sarton, parts of some good friends whom I’d want to have as part of my eternal mom-in-me. I also added in my two grandmothers: Josephine and Sophia. I never met them, but I knew of them.

But could I pass up a grandmother named Sophia—wisdom—in building my inner mother? And Josephine, my maternal grandmother) who was a professional a poker player and the neighborhood “reproductive health advocate” (she helped women in poverty to limit the size of their families.)  As I walked the beach I wrote the names of these woman in the sand, physically co-signing the new mother-in-me.

I picture this mom-in-me growing kind of like one of those pills you drop in water to delight a child. After soaking up lots of water the foamy pill blossoms into a seahorse or dragon. Now, soaked in lots of saltwater—both ocean and tears--I am growing my own mother.

Saturday, August 5, 2017

We All Have Cancer

Yesterday I looked through my Cancer library (yes, I have a lot of cancer books) and I pulled down the book, “Anticancer: A New Way of Life” by David Servan-Schreiber.

Servan-Schreiber was one of the founders of Doctors Without Borders and an accomplished neuro-psychiatrist. At age 31 he was diagnosed with a brain tumor. His book is about what he learned about cancer, and cancer treatment and cancer prevention.

Some of what he has to say is not new: the importance of exercise, diet, alternative treatments etc. But what is new is his description of roles we play in CancerLand-the patient’s role in his/her own care versus the doctor’s role. He also gives great guidance on how to sort medical info, nutritional info and he writes a lot about the physiological impact of stress. And the stress of cancer. He’s got lots and lots of facts.

But here is the fact that blew me away: “One hundred percent of people have cancer cells in their bodies after the age of fifty.” 

100% of us have cancer after 50. We all have cancer. In some people, it develops into tumors or conditions that become life threatening, in others it does not. But after age fifty we all have cancer cells in our bodies.

That’s wild and powerful information to process. It’s significant when you think about what it means to maintain your health but also relevant to cancer screening and tests for cancer. And it is especially a starting point for wrapping our heads around our consistent denial of mortality and death. Because here is the other absolute health statistic: 100% of us will die. 

We all have cancer, and we will all die. That’s not great news, but it’s not terrible news either. There is a lot of freedom—and maybe a path to peace—in those facts.

Knowing that all of us have cancer levels the field: there are not two camps: the sick and the well. There’s just each of us in some stage of living and dying.

This makes me think of Mary Oliver’s beautiful poem, “Wild Geese” in which she asks,

 “What will you do with your one wild and precious life?”

Monday, July 24, 2017

Do You Worry About Cancer Coming Back?

You may have discovered this: Most of your role as a cancer caregiver is, naturally, doing the daily care of your loved one—and of course, that brings up a lot of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So, I waited
and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we do talk about that, but what I can’t tell him is that I’m not sure that I can go through this again.”

Oh, I thought, “Oh, she is voicing the taboo.”

All of this I write about being a caregiver and dealing with the logistics of medical care, and the money, and the sex, but maybe I was missing what you might most need to talk about: the scary, uncomfortable, painful and awful-- often secret--truth, that we do not want to go through this again.

Part of it is that as caregivers we are in a secondary role: The patient is the lead and you, the caregiver, are the supporting actor. But we also get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over heels into the expectations that we will: roll with the punches; go with the flow; do whatever it takes.

But then, after the first round of cancer, after you come back to the surface, you might find yourself thinking, “I do not know if I can do this again.” 

You are not alone. Part of the stress is the timing. When cancer comes the first time we really don’t know a dam thing about what’s about to happen.

We read the pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe after you’ve had about a year out of CancerLand, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now you know, now you have a sense of this exhaustion and fear, and in that way it’s harder because the adrenaline of shock isn’t there to help us. And it is also true that there is less help—from family and friends--when cancer goes from crisis to chronic.

So, I told my friend that she is not alone. And you are not alone if you had this worry. I have been there and truthfully, I still go there: “Could I do it again?” I probably would, and so would you. But having that secret feel like shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. You don’t either. But I don't want you to have another layer of pain because you hate what cancer did to your good life.

Sunday, July 2, 2017

Mindfulness and Meditation for Caregivers

It would seem impossible to add one more thing to the caregiver’s to-do list. But, adding meditation or a mindfulness practice may be the very thing that makes that too long list a little more manageable.

No, doing meditation or yoga or Qigong or another mindful practice is not a remedy to the

stress and business of caregiving, but is absolutely a positive aid and help.

Now documented in many years longitudinal research, it’s been shown that caregivers—of people with serious illness, dementia or a child with a developmental delay—cope better, report more ease, and have fewer physical symptoms of their own when they are engaged in a mindfulness practice.

And mindful meditation, a breathing practice or yoga can become more than just a way to cope with the stress; it’s also a way to fully --and positively--embrace one’s life as caregiver.  

Trying to attend a weekly class may be a bit over the top, but there are many online resources, and podcasts that give basic instruction in Pranayama (Yoga breathing), restorative yoga, mindful awareness, and meditation. And if you are part of a caregiver support group, ask if some meditation or yoga instruction can be added to the meeting once a month.

Sunday, June 25, 2017

There's an APP for that Caregiver

We all need a helping hand when we are a family caregiver, and now there are a variety of social media applications that can go a long way to helping caregivers. 

Sometimes the hardest part of caregiving (after surfing all the emotions that arise) is managing your time. Today we know that—statistically—the typical caregiver is a woman in her forties, married, with children at home, caring for an elderly family member. Add work and economic challenges and you have a tsunami of worry and logistics. 

While the best help for the worry is likely a caregiver support group or a phone buddy who has been through it too, the help for managing logistics can now be on your phone or tablet.

Those logistics center around tasks: who is driving Mom, who is shopping, doing respite, picking up prescriptions or talking to the doc?

Talking itself consumes a huge amount of time and caregiver energy—so a way to outsource or support communication can be a lifesaver. Delegating a single scribe to handle updates to the family & friend communities saves the primary caregiver from call after call every night or every time there is a new treatment or procedure.

Here are a few helpful tools to make your caregiver life a little easier:

Google Calendar: It’s free and many people can use it at the same time. Use it to share info and appointments and ride scheduling.

Wunderlist: a task managing ap for multiple users. You list the tasks and participants can agree in real, online time to take a task and complete it. It also provides reminders. There is a free version for up to 25 participants.

Lotsa Helping Hands: is specifically for caregiver management. You can post requests for help listing specific needs and tasks. Family and friends log in to say yes and take that off your plate. There is also a blog feature where news can be shared out to the selected community all at once.

CareZone: an app for medication management. You can scan the prescription bottles with your phone’s camera and the app creates a list and schedule of all medications and dosages. It also provides reminders and health updates. Medication lists are in one place when talking to a doc or intake coordinator.

There are many more like these that you can find by searching for “technology for caregivers”. Many were designed for care in an elderly population but work perfectly in a cancer care/cancer caregiver situation.

And with any hospitalization --or at your chemo center --ask for the patient relations coordinator—don’t be shy about this-they have the latest news on services at their location and in their networks.