Wednesday, June 13, 2018

Loving the Wrong Person--Andrew Boyd

Getting ready to officiate at a friend's wedding a few weeks ago I was reading a lot of love and relationship poetry. As you'd expect there was a lot of blue birds and idealism and perfection and
forever in those volumes.

But then I came across Andrew Boyd, and his poem, "Loving the Wrong Person" and I can that be a wedding poem? And then I read it and I thought, "this is the perfect poem for the perfectly wrong couple." Voila!

Here's that perfect poem:

 We’re all seeking that special person who is right for us.
 But if you’ve been through enough relationships, you begin to suspect there’s no right person, just different flavors of wrong.
 Why is this? 
 Because you yourself are wrong in some way, and you seek out partners who are wrong in some complementary way.
 But it takes a lot of living to grow fully into your own wrongness.
And it isn’t until you finally run up against your deepest demons, your 
unsolvable problems–the ones that make you truly who you are–that
you’re ready to find a lifelong mate.
Only then do you finally know what you’re looking for. You’re looking for the wrong person.
But not just any wrong person: it’s got to be the right wrong person–someone you
lovingly gaze upon and think,
 “This is the problem I want to have.”

--Andrew Boyd

Monday, May 14, 2018

Chick Lit but Not Fiction--Jennifer Weiner in CancerLand

There has to be at least one Jennifer Weiner novel--or movie--that you love. She's that writer who captures women's experiences with their mothers, sisters, friends and shoes. She makes you laugh and cry. The women in her stories are just like us.

But this week--in her essay for the New York Times--Weiner tells her story of a short visit to CancerLand when she lived for weeks with a diagnosis of cancer  and then her treatment for a pre-cancerous condition. The beauty of this piece--she captures exactly that first day of panic, fear, strategy and sustenance. And then the twist (and her novels always have a twist) she hits hard at the question of cancer screenings.

While I'm sorry she had to go through that, I am glad that she got to write about it and share this information in her brilliant "Everywoman" style.

Here's the link to the New York Times article:

And here are two of her best-ever novels:

Monday, April 30, 2018

Paying the Doctor's Bill

When I was a kid and someone was fighting, or maybe if they threatened to hurt us, it was common to hear this retort, "You'll have to pay the doctor's bill." 

Thinking about that now, it's a clear giveaway that my neighborhood was made of lower middle-class working families. What other kids would think that having to pay a bill was a worthy threat? And a doctor's bill, no less. 

Maybe we had osmosed the worries of our parents: how were they going to pay the doctor's bills that come with raising a bunch of kids? 

Today we have returned to that worry: how in the heck is anyone going to pay for healthcare and how, indeed will we pay for the high cost of cancer?

Money talk? Yes there are taboos in CancerLand and money is one of them. 

Many of us have experienced people turning away from us because they don’t know how to talk about, or ask about, our loved one’s cancer.

But money is the place where most of us turn away. It’s a different kind of uncomfortable. We are reluctant to ask about prices, costs, expenses and who is willing to bluntly ask, "Can we afford this?” when the conversation is about a cancer diagnosis.

So, I was very happy to see a helpful document in Sunday's New York Times. The article was called, "A Financial Bill of Rights for Patients" and it details--in plain English was you can expect, ask for, and stand your ground to receive in the financial realm of medical/hospital care.

I'm putting the link below and you do want to read and print out the one page document--put a copy in your caregiver notebook/totebag.
There are nine (9) Financial Rights and they are:

The Right to an itemized bill--in plain English
The Right to no surprise bills
The Right to accurate info about providers in the plan
The Right to a stable network (this was big news to me!)
The Right to be informed of conflicts of interest
The Right to know in advance of facilities fees
The Right to see a price list for procedures
The Right to know about cheaper options
The Right to know your bill will not be sent to collections!

Lots of good stuff here--and in plain English. 
This is def a post--and a link to send to all the caregivers you know. We have so much to worry about everyday. Lets help each other lower the financial stresses.

Saturday, April 21, 2018

Life's Last Gift by Charles Garfield

Probably one of the things—and there are many—that scare us as cancer caregivers, is asking, “Can I really do this if my partner is dying?” 

Of course, we start that fear early in the process. Maybe at diagnosis, or after chemo, or after the side effects kick in, or when there is another set of tests and the prognosis is worse than we’d hoped. “What if he’s dying?” “What if she’s going to die?” and the deep fear, “What if I can’t do that?” “What if I can’t be the person who can really be present and loving, as we go through this?”

Relationships are all about intimacy: emotional, psychological, and physical, but being with someone who is dying is one of the greatest, but least desired, intimacies of any relationship. So, who is going to teach us or guide us on how to do that?

Now we have a book, a very beautiful book, that can guide us. Charles Garfield, Ph.D. has written “Life’s Last Gift” (published by Central Recovery Press) and Garfield is the honest, kind, by-your-side, kind of coach for how to be--truly be--present with your loved one, your partner, who is dying.

You know by now, here in CancerLand, that we get too much advice, too many platitudes, too much weird sympathy—most of it from folks who don’t really know the inside of this place. Charles Garfield has had lots of our experiences and he has the language and heart skill to speak to us caregivers right where we are—and right at that place we most fear: being fully present when the person we love is dying.

I highly recommend this book to cancer caregivers—everything Garfield offers in this book also applies to the day-to-day communication, self-care, and strategies of care with or without an end-of-life diagnosis. And, this book can be a deeply caring gift for your friend, colleague or parishioner who is caring for someone who is dying.

“Life’s last Gift” comes from the kind of experience most of us don’t want to have, but Charles Garfield has taken his own grief and losses to help the rest of us, as we attempt to do well what no one wants to do.

Friday, April 6, 2018

When Do You Tell Family and Friends About the Diagnosis?

In Today's Dear Abby advice column--in many US newspapers --the question and opinions--about whether to tell or not tell about a serious or terminal diagnosis. The column is in response to an earlier one where a man did not want to tell.

Abby shares her readers thoughts--yes to tell because it may lead to many loving interactions and maybe some reconciliation, or no, don't tell--keep your privacy and yes, we know people do say the most thoughtless things.

All valuable and valid points. Here's a link to the column:

But here's what is not considered: the impact on the caregiver in either scenario.

If the patient does want to tell then that impacts the caregiver, and if the patient does not want to tell
that impacts the caregiver too. Does the caregiver have any "rights" or consideration? That can also go both ways:

Telling can mean more support for the caregiver but it can also mean intrusion and expectations from others that increase the "work load." and not telling may allow the couple more intimacy and privacy but also limit the desired support for the caregiver.

The roles are not equal. The caregiver needs people to talk to. If it isn't from a support group or family--what will be the source of support.

This may be one of the trickiest things for a couple to negotiate in a cancer diagnosis...whose illness is it and who needs what kind of support from whom.

And also a question about workplace issues: if the choice is to keep the secret or privacy of the patient can the caregiver tell at work? how do they access FMLA or time-off to care for the patient.

All this to say it's not one sided or a simple issue, and it carries its own tensions at a time when fear and tension are flowing freely.

Thursday, March 29, 2018

Sex and Cancer--Why We Need This Book

Dr. Saketh Guntupalli and Maryann Karinch have given us a gift. And this may be a gift that you want to give to yourself or to a friend who is dealing with cancer or who is the caregiver of a partner with cancer.

I've written about "Sex and Cancer" before but I wanted to share it again and to also show this brief Youtube video of Dr. Guntupalli talking about why he wrote this book. He leads with the sad but true story that is more common than we realize about how lives are saved but relationships lost because no one talks about sex.

It's a crime.

As a cancer caregiver--and newlywed wife--I had to fight fiercely to save both John's life and the marriage.

And thank goodness I got mad--the result was crazy, sexy advocacy and this blog and a lot of community education. I was determined that no couple would feel as alone as we did the first time we asked, "So what about sex?" and the oncologist said "Have a nice day" and walked out of the room.

I think today I'd be more bold and follow him down the hall and say, "Hey, buddy, I asked you about sex not suicide.:)))

So years later, hundreds of blog posts, many talks and workshops and panels later, here's the book I wish I'd had back then.

Give a click below to listen to this short Youtube video with Dr. Saketh Guntupalli:

Sunday, February 25, 2018

Please Don't Tell Me I Look Tired

Maybe you are trying to be kind. Maybe you are trying to be supportive. Maybe you are trying to validate the challenging experience of a friend who is a family caregiver.  But believe me, when you tell a caregiver that they look tired, you are doing none of those things.

In fact, it’s just the opposite.

You say something like, “Oh honey, you look tired.” Or, “Are you OK? You look a little tired.”

Not helpful.
Not a compliment
Not going to fix anything.

Think about it: What exactly are you saying when you tell a friend that they look tired?

It usually means one or more of the following: dark shadows under the eyes, red eyes, sallow skin, poor posture, saggy facial tone, slumped shoulders, bad or melting makeup, dirty hair, not smiling, low energy, tension in the face or shoulders.

Does any of those things signify attractiveness? No.

So what you are doing when you say, “You look tired” is to say to your friend, “You look unattractive today.”

Is that what you meant as helpful?

Now I get it: You run into your friend who is a family caregiver. You know she is having a hard time and maybe you even know that she’s been tired.

Wouldn’t it be more helpful to say, “You look wonderful today.” Or “I love that color on you.” Or the best: “How are you feeling today?”
And let her tell you the status of her energy.

Because what if—and this happens a lot—she’s having a day full of hope, and it’s one of her better days, and maybe she is feeling the best she has felt in weeks, and secretly hoping she looks good today.

And then there you are, full of well-intended (we hope) compassion, heartily jabbing your caring needle-- “Oh dear, you look tired” --in her balloon.

Don’t do that. There’s no need. There are so many other ways to be kind to a family caregiver.