Thursday, August 27, 2015

Fear and Language Effect Choices in Cancer Care

How do we take apart the statistics and the estimations about which treatment is effective versus which care is necessary? What are the factors that guide you and your doctor in estimating your first step and then a next step?

The article (link below) below from today’s New York Times discusses the language of mortality rates, recurrence rates, and overtreatment versus unnecessary care. While the writer, Lisa Rosenbaum is using examples from breast cancer; this is an important article for anyone facing a cancer diagnosis or decisions about levels of care and treatment. 

She makes an important distinction between “over-diagnosis” and “overtreatment,” and she explains how fear and perhaps your fear temperament can make a difference in how you interpret what a doc is telling you.

She makes the other crucial point that “overtreatment” is not the same as “unnecessary care.” Again, your temperament—and maybe the doctor’s communication skills—are going to have an impact on your decision-making.

Do take a look at this brief but important article, and please, share this one with folks you know in CancerLand. 

Here's the link:

Tuesday, August 18, 2015

What's the Upside to the Trauma of Cancer

The odds are pretty good that if you have been hanging out in CancerLand you have experienced some trauma. It might be your diagnosis or the reality of your treatment or how the “not too bad” side effects turned out to be horrendous. OR, if you are the caregiver, the trauma is again that day of diagnosis and then the shock of exhaustion and the pain of having your body flooded with adrenaline for months on end. Plenty of trauma and yes, therefore plenty of post-traumatic stress.

But now there is some really good news about trauma and cancer. It turns out that there is also something called Post-Traumatic Growth, which also accrues to patients and caregivers in CancerLand.

I’m learning about this in the new book called “Upside—The New Science of Post-Traumatic
Growth” written by Jim Rendon, a veteran journalist.

Rendon spent years interviewing social scientists, physicians and survivors of trauma—all kinds of trauma and much of it medical and cancer trauma-- and his book show us that it is truly possible to thrive and not just survive trauma. That business about “what doesn’t kill you makes you stronger” turns out to be true. But it’s even a little better than that because God knows we are strong but in “Upside” Rendon shows that we get a joy and happiness boost as well.

This book is hope in hardcover for so many of us, and it is validation as well, that being happy after the trauma of cancer is not a sign of denial.

This is going to be an important book for therapists and coaches and counselors and especially for folks in oncology and cancer care. We can now back up our promises with science and research, when we say that no matter what happened, you can be happy, joyous and free.

Friday, August 7, 2015

The Literature of Caregiving: Cancer Vixen

Graphic novels—also called “comics” --have become so popular with readers of all ages that many bookstores have stopped segregating them on a single shelf and now integrate them with traditional books and related categories: fiction, nonfiction, parenting, health, memoir. 
This year Alison Bechdel’s graphic memoir, Fun Home was adapted for Broadway and became the Tony award-winning Best Musical of 2015. So it makes sense that graphic novels and graphic memoir are having a moment. So we can find them in the Literature of Caregiving and The Literature of Cancer genre.
One of the graphic/comic cancer books that I especially love is Marisa Acocella’s Cancer Vixen. Acocella had long been a cartoonist for The New Yorker, Glamour and Modern Bride magazines when she took a flying leap and wrote a book about her experience with breast cancer. 
Diagnosed just a few months before her wedding, Acocella provides a powerful visual story about getting the news, her changing relationship with her fiancé/husband, and the trials of treatment and the terror of being uninsured. 
Acocella also includes her dilemmas dealing with shoes, clothes, lipstick, girl friends, shopping and tribulations at her job, making it one of the funniest and most honest cancer stories. It is a mad combination of Girly-Girl advice and fierce advocacy.
Another graphic (in every sense) book about cancer is “Cancer Made Me a Shallower Person” by Miriam Engelberg. Engelberg was a cartoonist living in San Francisco and her book is a memoir created by a series of comics that take us through her cancer journey—first diagnosis, treatments, family, workplace, second diagnosis, more treatments and her internal reactions.
A couple of things set this work apart from Cancer Vixen: unlike Marissa Acocella, Engelberg was not a trained cartoonist, but her outsider-naïve style lends an air of vulnerability and immediacy to the work. Unlike Cancer Vixen, Engelberg’s book does not have a happy ending. She died a few months after the book was published.
Both of these books are funny and inspiring. At the center of each story is a view of the ways that many of us react to difficult things. For Acocella and Engelberg it’s cancer, for you or a friend it could be divorce, aging, trouble with kids etc.Yes, there is humor in these stories, as well as pain and hope and honesty.
The Literature of Caregiving is a monthly series here at Love in the Time Of Cancer. 

Friday, July 31, 2015

Practicing Discernment

One friend asks, “Should she change jobs?” Another thinks about changing her whole career. A coworker debates, “Should she buy a house or continue to rent?” Someone else talks about graduate school versus yoga teacher training. And then in CancerLand there are so many decisions--which doctor, which treatment, more? or less? or Never?

“A choice between goods” is one definition of discernment. Not right or wrong, good or bad, but a choice between goods.

But how do you “do” discernment?

Years ago my spiritual director gave me this list of tools for discernment:

Sitting still
Asking God
Get quiet and listen for the subtle
Think and feel
Then use your gut, your courage and your integrity.

Another good discernment practice, if you have time, is this:
Fully describe option A to yourself: the graduate program, the classes, location, books, homework, money, and benefits, people. Declare (to yourself) that this is the choice you have made. Live as if that is the final choice—that and only that for two weeks. Pretend to yourself it’s a done deal and go about your life as if that is true. Pay attention to your body, energy, heart and head.

After two weeks again fully commit yourself, but now to option B. Again, make full mental commitment—two whole weeks. Now what do you notice or sense in your body, mind, heart, energy? Write about what you notice and sense. What messages do you get?

Talk to people who have chosen either options –or similar ones—and then pray for a sign.

Tuesday, July 21, 2015

The Swan

Last night—I was feeling awkward in my own life—then gratefully I remembered this poem that I read a few years ago at a memorial for our friend Will.  I am in love with this image of ungainly, ungraceful swan that lumbers and is awkward.

That’s not what we picture when we think swan—the one in the water, the one we see gliding, regal. And now Rilke says that is like us and I think, “Yeah, that is like me and that is why I like poets—they can put words to this feeling and this fear of my own bumbling, rope tied, tripping over to-do lists life:

"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."

The Swan, by Rainer Maria Rilke, translated by Robert Bly

Friday, July 10, 2015

Caregiver Comedy with a Big Dose of Help

“The Dutiful Daughter’s Guide to Caregiving: a Practical Memoir.”

I was introduced to this new book just this week. As soon as it arrived I opened to a random page and started laughing. Now, as you know, we look far and wide for the chuckles in caregiving but this book has super powers: honest practical help in the complexities of caring for older adults—two aging parents—and a lot of laughter—which (writing truth here: humor often comes from telling the truth) lightens the load and reassures us that we are not alone in this crazy caregiver game.

So yes, Judith Henry has written a memoir and guide. One of my favorite chapters is called, “We Were Never the Waltons”. Doesn’t that just nail it on sibling relationships and caregiving?

You’ll laugh. You’ll recognize yourself—and others—in this book. And—this matters: it’s a small book so it will fit in your hospital visit carry-on bag, and because it has a cute as pie cover you can give this as a gift to friends who are heading down the caregiver path. You’ll be giving them actual wisdom without seeming preachy.

“The Dutiful Daughter’s Guide to Caregiving” by Judith Henry

Monday, July 6, 2015

Helping Caregivers to Manage the Meds

The role of a caregiver is complex.  There are many different responsibilities that are rolled into the work of a caregiver.  From support system to health aide, a caregiver provides for the mental, emotional and physical.

There are many health service developments making stunning breakthroughs and extending longevity and quality of life but there are still so few resources for the millions of caregivers out there faithfully serving loved ones.

One of the key responsibilities of a caregiver is managing medication.  For many, judging multiple doses, endless bottles and continuous renewals takes up precious time that could be spent doing other things.  Here are a few tips to better manage medication and keep you from wondering, “Did I administer that dose correctly?”

Use Technology
Your phone has the ability to set reminders and alarms that can be repeated and labeled at set times every day. This is an easy way to use a tool that has evolved greatly over the past few years.  Gone are the days of days of sticky notes on the fridge or intense spreadsheets that could be marked or read wrong.  Now there is a simple way to set dosage reminders right at your finger tips!  

Simplify Your Pharmacy
You may need some practical tools. PillPack is a company that is transforming the pharmacy model to help patients and caregivers who are managing multiple medications.  They are hoping to reduce medication errors, which, of course, will reduce hospitalizations and emergency room visits.

This is done through a service of pre-sorted medications that include labels of when and how to take each pill.  PillPack coordinates refills and delivers to you: they guarantee on-time (and free!) shipping. You have the ability to manage medications online through a dashboard that includes tracking shipments, billing information and a calendar of all of your critical dates. The dashboard itself is a tool for caregivers. It gives you the ability to manage medication without an additional call to the doctors or insurance company.

Keep A Schedule
Remind your loved one pair’s morning pills with making the coffee and evening pills with dinner.  If you associate the medicine you administer with certain medicines with other, everyday tasks, it will become more of a habit than a hassle.  Always be sure to be complying with the specific restraints of medications by checking their labels!  Make sure you know if a medication needs to be taken with food before giving it on an empty stomach.  

 Always remember to take time for yourself. Taking time away is key for your mental, physical and emotional health.  Make sure, as a caretaker, you are setting time aside for a hobby, a support group, or just a weekly coffee date.  Not running yourself into the ground is a key component of being able to care for a loved when dealing with cancer.

If you are not in a healthy state, you will not be able to manage medicine for another.  Make sure you staying alert to warning signs of burning out.  Hopefully these tips will help with your medicine management and free up time that can be spent elsewhere!

Today’s guest blogger is Hannah T. who works for an online pharmacy in New Hampshire and who knows a lot about medication management.

Thanks Hannah!