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.

Saturday, June 17, 2017

Summer is Coming

Today we did a three-mile walk up and down the hills.  We were huffing and puffing but moving along pretty well. As we made the turn to come back home I said to John, “Do you remember the summer after your first surgery; you could not walk from our front door to the car.” He did remember. It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength. He looked the same but could not walk at all.

Now we hike and do hills and push each other on. We went to the movies at the

mall yesterday, ate burgers for dinner, went to the grocery store together. None of that possible in CancerLand days.

That summer chemo changed so many things. No movies, no malls, no grocery stores. Even the tiniest bit of air-conditioned air caused him excruciating pain as his throat closed and froze. He couldn’t even look in the refrigerator. I had to learn to cook. That turned out to be one of the gifts of Cancer Land—I became a cook.


But the summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a trip to Tanglewood tonight. So many things changed. We grew from them and with them. It isn’t everyone’s path. Cancer sometimes ends relationships. It can be too much. There is no blame for that. It can just be too dam hard sometimes.

But what I feel today is gratitude and grace, and I’m cherishing every day we get.

Sunday, June 4, 2017

So this is Nina Riggs--poet, writer, Mom, wife, friend, dog lover, cancer patient. And gone.

Left for the rest of us is her new and amazing memoir, "The Bright Hour--A Memoir of Living and Dying". This fine and beautiful book is about living with--and dying from--cancer.

Nina Riggs was a poet, and that facility with language and images, and her ability to see through the world ensures power on every single page.

Riggs writes with great humor--much needed here in CancerLand, and her book is about living with cancer--raising kids, adopting a dog, being in a marriage even while getting ready to die.

With this book Riggs raises the bar on how to die, and how to see the world every single day that you are alive. This will be the most uplifting book you read this year.




Tuesday, May 16, 2017

"Kindness is more important than wisdom, and understanding that is the beginning of wisdom."


                                                                                 --Theodore Isaac Rubin