Saturday, February 28, 2015

Spring is Coming

It’s March now and that makes me believe that spring is nearby. Today we did a three-mile walk that went up and down some little hills.  We were huffing and puffing while we kept up a pretty good pace. 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?” 

And he did remember. It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength so fast. He looked the same but could not walk at all. 

Now we hike and snowshoe and do yoga and dance, and we push each other to do more.

That first summer of chemo changed so many things: no movies, no malls, no grocery stores. Even a tiny bit of air-conditioned air caused excruciating pain, and he would choke when cold air hit his throat. He couldn’t even open the refrigerator door without a jolt of pain from the cold air. I had to learn to cook, and sister Susan had to be my cooking sponsor. 

That turned out to be one of the big gifts of Cancer Land—I learned to cook, and I learned that I liked to cook, and I learned I could be a good cook. Who knew I had that in me?

But that spring when it all began was so shocking and crazy. 

I think about this today as we hike and then dance around the living room and get dressed to go out for dinner. So many things changed. We grew from them and with them. I know that isn’t everyone’s path. Sometimes cancer ends relationships as well. It can be too much. The coping mechanisms don’t mesh, or the fear is paralyzing. No one can be blamed for that. It can be just too hard sometimes. 

So tonight while I feel spring coming, I also feel gratitude and grace.

Sunday, February 22, 2015

Smokin' Hot Resentment

It comes around again. No matter how much I know and how much I try to change this one comes around again. It’s sneaky too; I call it by other names: I say, “I’m annoyed” or “hurt” or “challenged”. Sometimes I play the “I’m too spiritual for my shirt” game and think about how sad it is that he or they are less spiritually evolved than me.
Yes, I even bring God into it. 
And then I realize, “Oh, this is resentment! (again)—and it’s mine!”
Last week I heard a woman talking about how much she resented her ex, and she talked about his ex who was the reason they are now ex, and how when they were together she was resentful at him for not being more resentful of his ex. Hearing her describe that tangle made me laugh—which, gratefully began to help me take one step out of my resentment.
The other thing that always helps me release the stickiness of resentment is this saying that I learned in Alanon:
“Resentment is like setting yourself on fire and hoping the other person dies of smoke inhalation”.
(The matches are always in my pocket.)

Tuesday, February 17, 2015

The Literature of Caregiving: Jane Kenyon and Donald Hall

Welcome back to The Literature of Caregiving:

Jane Kenyon and Donald Hall: poets, lovers, husband and wife. Both had cancer. Donald, much older, lived. Jane, much younger, died. But, both being poets, they had the habit of turning their life experiences into poetry. So we have poetry collections from each of them describing each turn and phase of their roles as caregivers and as patients.

It’s fascinating to read their work side-by-side and to trace the intrusion and trajectory of cancer through their loving—and sexy—marriage.

I read the book, “The Best Day/The Worst Day” by Donald Hall. It is the story of the last year of Jane Kenyon’s life, her death from leukemia, and the story of their relationship, and a marriage of two writers. 
I am interested in writer’s lives and especially in how two writers lived together doing their work, and making lives as freelance writers and teachers. But I also read Hall’s book because I have also known since attending Bennington that his story is also the story of losing Jane and grieving that loss. 
My first year at Bennington was the year after Jane’s death and Donald’s readings that year and the next were of his poems/letters to Jane after her death. He was a grieving man.
Each year when Hall came to Bennington to read the perspective was different—the love always so strong, the advocacy fierce, but his point of view changing, enriching, deepening.
I know that I re-read this book to look into the face of grief and death. I also was clear that I started at the back of the book, the ending and the postscript because I wanted to see right away what Donald would say about Jane’s death. He is then writing ten years after Jane’s death. So I know he has survived. That is both my hope and my fear. 
Donald Hall cared for Jane for 15 months: chemo, bone marrow transplant, all the horrible side effects—many of them familiar to me now: weakness and sore mouth and hair on the pillow and in the sink. Hall describes the process of dying and the feelings of loving someone who is very sick and then dying.
I can feel the howl when they are told leukemia is back and there is nothing more to do. Jane dies eleven days later. Hall loves her so much but he is clear about not trying to make her death harder for her by loving her in a way that might make it harder for her to let go into death. I’m moved by the selflessness of loving in that way. 
Later I read, “Unpacking the Boxes”, another memoir by Donald Hall. This one is written 14 years after Jane’s death and in it Hall recounts much of the story that he wrote in “The Best Day/The Worst Day”…but now he is farther from it and he reveals even more.
What strikes me was how much he missed being her caregiver. The details of daily caring for her in leukemia were so hard and he was the primary caregiver day and night. It meant connection through the best and the worst.
After she died he missed her of course but he was surprised that he also missed the hard, tiring work of the physical care for her. That I understand too. There are days when I know I am benefitting from John’s cancer. It’s a connection and a unique way of being in relationship. No one would wish for this but I am aware that it is a gift of sorts. It sets a strong priority and it makes a bond.
But I also make this note to myself: One of the reasons that Jane’s death is such a shock to Hall and Kenyon and feels so unfair is that Donald Hall was 19 years older and he had colon cancer years earlier that had metastasized to his liver. They had already been through CancerLand with Hall’s surgeries, chemo, cancer recurring—all of it his. And then the sharp, unexpected turn: Jane gets leukemia and she dies one year later.
The other thing that Donald Hall—quite bravely—writes about in “Unpacking the Boxes” is the way his energy became sexual. He describes his sexual fantasies and his sexual behavior while Jane is dying, and after her death. He shares the voracious fantasies that would flow thru him and how, after her death, he acted on them.

Here is a poem by Jane Kenyon written when she was ill:

    I saw him leaving the hospital
    with a woman's coat over his arm.
    Clearly she would not need it.
    The sunglasses he wore could not

    conceal his wet face, his bafflement.

    As if in mockery the day was fair,
    and the air mild for December. All the same
    he had zipped his own coat and tied
    the hood under his chin, preparing
    for irremediable cold. 

                        Coats, by Jane Kenyon

And here is a poem, “The Painted Bed” by Donald Hall:

Even when I danced erect
by the Nile’s garden
I constructed Necropolis.

Ten million fellaheen cells
of my body floated stones
to establish a white museum.
Grisly, foul, and terrific
is the speech of bones,
thighs and arms slackened
into desiccated sacs of flesh

hanging from an armature
where muscle was, and fat.
I lie on the painted bed

diminishing, concentrated
on the journey I undertake

to repose without pain
in the palace of darkness,
my body beside your body.

--Donald Hall

[The Literature of Caregiving is a monthly series here on Love in the Time of Cancer--you can read previous installments on December 8, 2014 and January 16, 2015]

Sunday, February 15, 2015

A Married Valentine's Day

I have always loved Valentine’s Day. It is the one holiday that is totally frivolous and which has the pleasure of gifts to be given but without guilt. But this year Valentine’s Day almost got by me. I got my Valentine’s Day wake up call just in the nick of time. 

This alert came to me in the most casual way but the result was an epiphany. I was leaving the office early one day last week, and Michele, my co-worker, who is smart and single, was leaving at the same time. Walking to the parking lot I asked her plans for the evening? “I’m going to the mall to get ready for next Saturday”, she whispered conspiratorially. 

She was including me in something, but I didn’t get it right away. “For Valentine’s Day,” she said, grinning. Then I got it.

She was going to buy lingerie for her Valentine date. Michele has a very nice boyfriend; I’m sure she’ll get flowers or candy but I’ll let you guess what he’s getting. 

I was flattered that my younger friend included me in her knowing laughter. She assumes I “get it”; that Valentine’s Day is not just for kids. I got her point, but my own married state brought me up short. 

No, I didn’t forget Valentine’s Day. I bought Dave a gift, but I didn’t think about the need for something red and lacy. 

I was a single for a long time before we met and in those years I gave many a salary to fine lingerie stores. I remember swearing that I would never be one of “those women” who wore flannel to bed. But now, later,—and in upstate New York’s winter--I see exactly how it happens.

Maybe single women put more energy into romance. We married ones complain that husbands forget birthdays or give appliances for presents, but friends, look in your lingerie drawer; are you holding up your end of the fantasy-romance bargain?

I think of Nora Ephron, who wrote in her novel, “Heartburn”, about married versus single. She said:

“One thing I have never understood is how to work it so that when you’re married things keep happening to you. When you are single things happen: You meet new men, you travel alone, you learn new tricks, you read Trollope, you try sushi, you shave your legs. Then you get married and the hair grows in.”

Well, I do read Trollope and I love sushi, but hair grows. How does that happen?  Maybe by letting Valentine’s Day come and go.  

I know, I know, I can hear the screaming. Do I sound like Helen Gurley Brown? I’m actually OK with that; I adored her writing and her brains. She wrote the first smart career book for women but cleverly named it, “Sex and the Single Girl” so it flew off the shelves. Yeah, I’m a feminist who doesn’t think sex is sexist. 

When I add it all up and compare my single versus married days the pluses fall on the married side. This good marriage makes me a better woman, and that makes me a better employee, and writer, and friend. 

John is the love of my life. So doesn’t the man who warms up my car every morning deserve something hot for Valentine’s Day? It’s married confidence and feminist energy that let’s me enjoy this choice. 

Wednesday, February 11, 2015

We Measure Out Our Lives in Tubes

It was T. S. Eliot who famously said “I have measured out my life with coffee spoons.” What a lovely image for and from a great poet. But this week I glimpsed another way I can measure my aging life: I can count the tubes.

Yes, you might remember going to Grandma’s house, or maybe to your Mother’s and her medicine cabinet had a million squashed tubes of this and that. Some were shiny, some rusty, and some gooey with missing caps, and you thought, “How does that happen?”

Maybe you also remember when your medicine cabinet had aspirin, birth control, Vaseline and maybe an antibiotic? And then as you got a few years older, there are a few more things and then, suddenly it seems, you (like me last week) look at that basket under the bathroom sink and its full of tubes!
We now have all manner of tubes with creams, ointments and lotions. They are specialized and generalized. We have tubes with goop for every body part and every disturbance. They are oily, creamy, pink, clear or shiny. They range from first aid uses to germ killing to fungus battling to skin soothing.  Some I bought off the shelf and a few were prescribed. 

But this is the new measurement of my life—no longer romantic coffee spoons or lovers past. Now I measure my life in tubes.

Sunday, February 8, 2015

You Can Say No to Chemo

No, you probably don’t want to take this book to the oncology center to read in your vinyl Barcalounger, and it’s probably going to be inflammatory to show it to your oncologist when you have your one-on-one meeting. But it is not a bad idea to read or at least skim this book if you have any interest in alternatives or treatment options.

Laura Bond is a certified health coach—so she’s not a doctor, but the folks she interviewed are. And she did an amazing amount of research—and really dug into studies on the effects and the effectiveness of chemo and radiation. And, you already know this, both of those treatments cause cancer as well as cure cancer. The strategy with most chemo recipes is to kill the bad guys faster than the good guys and hope the good guys don’t turn bad. We do a lot of things with that kind of gamble so lets not totally bash chemo and radiation.

But—wouldn’t you like to know about the other options—the ones your oncologist is not going to mention and the ones Big Pharma is not going to support? Yes, you do. 

Some of those alternatives are going to seem wackier than wacky, while others will have you going, “Huh, really—that kinda makes sense.” Heat as a cure? Yep, allowing a fever to rise as a remedy? We’ve done that for years. Some of the extreme diets that Bond reports on had me rolling my eyes, while—surprise to me—the one about shaking just strangely enough—made sense.

No one—including Laura Bond—is saying walk away from chemo and radiation—but she is saying: read, ponder, ask, think, ask again…and try some things. What she’s given us in this book is a batch of solid research and resources so you can select ones you want to look at further.

The resource section in the back of the book is very helpful—it will give you contacts and phone numbers and websites to make your research so much easier.

Tuesday, February 3, 2015

What Kubler-Ross Never Said

Book after book, and class after lecture, has given Elizabeth Kubler-Ross credit for something that she never said, and as a consequence penalized people who were grieving.

You know the famous five stages of grief. Perhaps you too were told that your grief was "incomplete" or "delayed" or "out of order". You may even have been prescribed medications or therapies because your grief didn't quite fit the timeline or order of the Kubler-Ross process.

Like any urban legend or quasi-scientific fact it is much harder for the truth to stick as tightly as the error.

So: Elizabeth Kubler Ross never said that people grieving the loss of a loved one would go through five stages. She never said there was a direction to those stages, nor did she give a suggested timeline. In fact, she didn't work with people who were grieving the death of their loved ones.

Elizabeth Kubler-Ross worked with people who were terminally ill--who were in fact, themselves, dying. It is those dying people that she studied, observed and wrote about. It is the dying of whom she suggested there may be stages to how they process their diagnosis and the consequent dying.

Can you imagine the grief we have caused in saying to someone who has lost a loved one, "You are in denial, or bargaining, or in the anger stage--soon you will get to acceptance"? No wonder people who grieve --healthfully--for many years choose to stay silent. What amend can we make?

Ah, but here comes an article on another way of supporting someone who is grieving. In the New York Times article below by Patrick O'Malley, we see a therapist take a new view of "delayed grief" and more correctly understand depression associated with grieving.

Read on and please do share this one.
Here's the link:

And forgive Elizabeth Kubler-Ross for what she never said.