Saturday, June 27, 2015

Shakespeare Joins the Celebration

In honor of yesterday's landmark Supere Court decision here are a few words from William
Shakespeare on love and marriage:
Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wand'ring bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me prov'd,
I never writ, nor no man ever loved.
---------Sonnet 116--William Shakespeare      

Tuesday, June 23, 2015

Cancer and Fashion

I’ve owned this book –“No Time to Die” by Liz Tilberis--for years and never sat down to read it until now. That makes no sense to me because this is a book about two things that I love to read and write about: Cancer and Fashion.

Yes, how about that for a combination? And it works.

Liz Tilberis was the Editor-in-Chief at Harper’s Bazaar. She was living quite a glamorous and very hard working life—magazines are hard work—when at 41, she was diagnosed with Ovarian Cancer.

This book has all you would expect: stories of celebrities and designers and oncologists and treatments…and the most expensive cancer wig you have ever heard about. Let it be said Liz Tilberis looked as good as any woman can look with cancer and brutal chemo treatments.

But the book has more than the typical cancer memoir and more than a fashion editor’s story. Liz was also a Mom and wife and great friend—and British, and this book covers all of those topics too.

If you loved Diana Spencer—there is a lot of Diana in this book. If you liked “The Devil Wears Prada” there is a lot of behind the scenes for you here, and if you or a friend has Ovarian Cancer you’ll see what you have in common and what the special perks are for the wealthy and well known in Cancer Land. Yes, there is a teeny bit of a social hierarchy in cancer.

I loved this book and loved learning about Liz Tilberis. It is no secret that she died of her cancer. But what I can take away is how she lived with cancer and the choices she made to make her life as an executive and a Mom –also with cancer.

Wednesday, June 17, 2015

What if Cancer Comes Back?

So much of the cancer caregiver’s role is naturally about caring for their loved one. And so, of course, there is a great deal 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 can talk about that, but what I can’t tell him is that I’m not sure I can do this again.”

Oh! I thought, “Oh!”

All of this talk about being a caregiver and dealing with cancer and talking about sex, and I was missing what cancer caregivers might most need to talk about: the scary shame of hating cancer, and the painful, often secret truth, that we do not want to do this again.

Part of it is that the caregiver is in a secondary role: The patient is the lead and the caregiver is the supporting actor. But also we get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over ass into the expectation that we will: roll with the punches; go with the flow; do whatever it takes, but then, when after the first round of cancer we might think (most often to ourselves) “I do not think I can do this again.” 

Part of it is the timing and the dynamic. When cancer comes the first time we really don’t know a dam thing. We read 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 a year off, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now I know, now I have a sense of this nastiness and exhaustion and fear, and in a way it’s harder because the adrenaline of shock isn’t there to help us. And because there is less help around us when cancer goes from crisis to chronic.

So I got to tell my friend that she is not alone and that I have been there and truthfully, can still go there: “Can I do it again?” I would most likely—our culture has no place for people who run out on cancer—but having that secret or that shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. And I want all of us to be able to admit that. Like the motto of the Amy Winehouse House says, “Fuck Cancer.”

Sunday, June 14, 2015

What the Living Do

On the theme of sibling caregivers, here is a poem by Marie Howe:

 “What the Living Do” 

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.
And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.
It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.
For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those
wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.
Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want
whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless: I am living. I remember you.

--Marie Howe

Sunday, June 7, 2015

The Literature of Caregiving: Siblings as Caregivers

At some point each Christmas morning the telephone rings
and hearing the phone I think happily, “Oh, that’s Larry 
calling to say Merry Christmas”-- as was his habit for 
twenty-some years since we left home in our teens.  Then 
smiling, rising from chair or bed to reach for the phone, I 
drop my hand. I remember. This cannot be Larry calling; 
Larry is dead.

I am the youngest of five and have watched as my older brothers and sisters became ill. I was the caregiver to my brothers as they went through long illnesses and then died. For one brother I was the nearby, hands-on caregiver, for the other I was the long-distance, travelling caregiver. Both versions are hard.

One of the things I have learned going through this kind of loss so many times is that there is surprisingly little consideration for siblings as caregivers and siblings as mourners. Siblings are not considered primary mourners; they are expected to assist the primary mourners: parents, spouses and children and then get on with their own lives. But sibling illness and death is often more traumatic because of it’s very unexpectedness.

When I began this education in caregiving I was taking care of my brother Larry, and soon after his illness began my brother Sigmund was diagnosed with ALS. I was beside myself with grief and also with logistics. It took a long time to find my role and my voice with doctors and in hospitals and with all the related support staff. I can marke my learning how to be a caregiver with each visit to the hospital with Larry—and there were so many.

What also helped me enormously were two books by sibling caregivers. First, “Landscape Without Gravity” by Barbara Lazear Ascher—who in 1993 wrote about taking care of her 31-year-old brother Bobby who was dying of AIDS. She writes of his care, understanding his
relationships and then the grief—collective, familial and personal that consumed her.

Le Anne Schreiber’s book, “Midstream” was written earlier but came to me later. Schreiber writes of sharing caregiving duties with her brother as they care for and prepare for their mother’s death. Her book is more of a journal, that depicts the interplay of siblings—back and forth—as
the caregiving duties mirror Schreiber’s love of fishing for trout.

The love and pain of brother and sister in that book brings back to me my appreciation for a condolence note that I still cherish.

She wrote:“The loss of a brother is so terrible because we played with them and fought with them and expect to have our children do the same with theirs, and we expect them to be there and to help us when it is time to bury our parents. Losing a brother is losing both your past and your future.” 

I remember when I was in the first grade learning about The United States from one of those wall sized maps that are common in elementary classrooms, the ones that show each state as a different color, and I remembered the first time we went on a family vacation and how disappointed I was that all that distinguished the next state was a sign saying, “Welcome to Ohio” and Ohio was not blue as my classroom map had shown. 

 I was older, but similarly disappointed when, after my sister Joyce died, I discovered that the stages of grief that I’d always read about were not clearly recognizable. Instead I found that I could be angry and happy and sad and in and out of denial and find acceptance and then be depressed all over again. I believe that it is our fear of death that makes us want to organize grief, make it shape up, get in line and have specific manageable moments.

“I am so sorry about your loss”.  I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word “dead”. But after losing my brother Larry I know that “lost” is not a euphemism but the perfect word to describe the feeling that follows a death.

Though he died years ago, my feeling about Larry is that I have misplaced him; It’s that 
sensation of knowing that my book or my glasses are around here somewhere…if I could just 
remember where I left him.  There is a sense of something just out of reach, still here, but 
also gone. 

I think this is why we are so hard on the grieving. The world loves closure and to have 
things sealed and settled. But death and grief are not as final as we would like. 
This is why it is a great surprise to find that grief contains such a broad range of expression.  
What I have learned is that death ends a life but not a relationship. And that is why, on 
Christmas mornings, I still rise and reach for the phone. 

The Literature of Caregiving is an occasional series on this blog. See other entries on
December 8, 2014, January 16, 2015, February 17, March 23rd, and May 1st 2015.      

Tuesday, June 2, 2015

Feeling Powerless? Try Alanon!

Today I attended an Alanon meeting. Alanon is the 12 step program for family members or friends of someone with an addiction. Today I realized that Alanon is also a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)
The ideas discussed in an Alanon meeting are all things we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.
Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.
And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow. 

Take a look at the Twelve Steps. They work for cancer and caregivers too.