April is Poetry Month

Our April Poetry Month  ends with a poem to be shared with everyone--in and out of CancerLand. A reminder to live this day, by the magnificent Jane Kenyon:

Otherwise

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise. 

---Jane Kenyon

The Upside to Dying of Cancer

Stay with me on this one please. Yes, it’s just a tad morbid—but there is, I swear, an upside. This may be one for small group discussion—with or without wine, with the girl friends, couples at dinner, adult siblings, workplace lunch room.

But you have to be well past the conversational opener that begins, “If I was going to die…”. We’re adults here and we know there is no “if”. Still balking? Still believe in Superman? Come on. 100% of human beings will die. So, given that, what’s the best way?

If you are over 45 you have begun to see some deaths—grandparents, parents, friends, etc. You’ve witnessed enough different kinds of illnesses to have a sense of the good and the bad and the horrid. So how about your death?

I have seen some awful, prolonged illnesses—brothers with ALS and Antitrypsin disorder, parents with strokes—the sudden death kind and the lingering in a coma for years kind. I’ve also spent time with many grieving people—who are ill or who are losing or who have lost a loved one. And here’s my take on this best death possibility.

A sudden heart attack is a poor way to go. In terms of less pain and little personal suffering it’s good, but no preparation, no good-byes, no chance to give things to people, too many things unsaid, too many messes and if you like control—you get zip. Someone else decides what to do with your kids, pets, clothes, books and ideas.

Ditto for strokes. With a stroke you die outright (same as heart attack) or you linger in a coma or semi-conscious for years costing the family money, grief, and painful ambivalence about you. No thanks.

Lou Gehrig’s Disease (ALS) the horror belongs to everyone—the patient (your mind works but not your body) and the caregivers die one thousand times over. (Been there. Done that.) Upside: you know what is going on, you do get to plan a little, but then you mostly watch.

So this brings us to cancer. Dreaded cancer. The disease we are trying to cure. But here’s the thing; if we cure cancer we are left with the choices above. With many cancers there is some time to live between diagnosis and death, there is some choice about what to do, there is time—months or years-to get used to the idea that the disease will end your life. The perfect cancer—if I dare say that --is one that gives you 12 to 18 months to live so you can talk, plan, visit people, try some treatment options, maybe do something on your bucket list, have the chance to personally hand your books, jewelry, artwork, favorite scarves etc. to your friends. It’s the illness with which, should you choose, you could, sort of, go to your own funeral.

Once you accept that you will die, and really grasp that in your heart and head, cancer has its pluses.

April is Poetry Month: Anna Swir

Anna Swir wrote many poems about flesh. Here is her poem, "Thank You, My Fate," which I read at our wedding:

Great humility fills me,
great purity fills me,
I make love with my dear
as if I made love dying
as if I made love praying,
tears pour
over my arms and his arms.
I don’t know whether this is joy
or sadness, I don’t understand
what I feel, I’m crying,
I’m crying, it’s humility
as if I were dead,
gratitude, I thank you, my fate,
I’m unworthy, how beautiful
my life.

— Anna Swir
Translated from the Polish by Czeslaw Milosz

Sexuality and Spirituality

A few weeks ago I went on a retreat at Wisdom House in Connecticut. The retreat leader was Don Bisson, a Marist Brother from upstate New York. The topic of the retreat was “Sexuality and Spirituality.” We spent three days listening and writing and being quiet with ideas about God and bodies, the Incarnation, sex and shame, and because Don is also a Jungian analyst, we talked a lot about Jung’s ideas of sexuality and spirit, and that holy, psychic intersection of sexuality and spirituality.

I’m still burbling over much of this material but I want to share a few of the things that I want to ponder more –and likely will ponder more with you here on this blog. Here are some of my take-aways from Don Bisson:

“The skills of intimacy with another person are the same skills needed for intimacy with God.”

“Intimacy with another person IS intimacy with God—it’s not a separate thing.”

“St Francis of Assisi became compassionate and whole by accepting his anima and his animus—he called them Brother Sun and Sister Moon.”

“Sexuality is not exclusively procreative. The purpose of marriage is to find the right person to force you to individuate. The goal of life is not happiness but individuation.”

“All relationships are sexual because we are in human bodies.”

Poetry Month: Sunday by Kathy Davis

When I teach The "Literature of Caregiving" class I love to share "Sunday" by Kathy Davis. It is a seemingly simple poem describing a seemingly simple interaction but it is loaded with power and the ever present ambiguity and confusion of cancer and caregiving. Here it is:

Sunday

Joan leans over

the fence, says she had a mastectomy

last Tuesday. And I think: A meal,

I should have known

and taken her one. Chicken Tetrazzini,

tossed salad. She winces when I touch

her arm. A wasp,

for a moment, gives us both something

to wave at. Any degree of mobility

increases survival. “What can I do?”

I ask knowing the answer

will be “Nothing.” Tomatoes, onions, squash

to be chopped.

On my kitchen table, the knife

I use to cut everything in little squares. A breeze,

from somewhere the scent of honeysuckle.

“Let me know if you need

anything,” I say. Joan’s face blank.

The zinnias shouting red. She nods, weaves

gingerly back inside. Her screen door

misses the latch, hanging open like a dare.

                                                      By Kathy Davis

Mesothelioma -Some Basic Information

I am just learning about an asbestos related cancer. You may have seen info in the news about this disease and wondered what it’s about so here is some very basic info:

Newly diagnosed mesothelioma patients and their caretakers are often thrown into a blurry world filled with confusing numbers and conflicting statistics. Because it’s a rare cancer research on the disease is limited, and accurate information can be hard to find. However, as a mesothelioma patient and their loved ones work to cope with the cancer, having a clear understanding of what the disease is and what to expect can make a world of difference.

Below are some basic facts about this asbestos-related cancer:

·       *Between 2,000 and 3,000 Americans are diagnosed with mesothelioma each year.    Almost all cases of mesothelioma cancer are caused by asbestos exposure. Most of this asbestos exposure occurred at an industrial occupation before the 1980s.

·      * Most cases are diagnosed in men over the age of 55.

     *The symptoms of mesothelioma include chest pain, shortness of breath and a persistent cough.

·       *There are three different types of mesothelioma, and they each refer to the part of the body where the cancer is growing. Pleural mesothelioma forms in the lining of the lungs, peritoneal mesothelioma forms in the lining of the abdominal cavity and pericardial mesothelioma forms in the lining of the heart.

·       *Traditional treatments include chemotherapy, surgery and radiation therapy.

·       *Patients diagnosed in stage I are expected to have a 32-month average life span. This drops to 6.5 months for patients diagnosed in stage IV.

u     You can  learn more at http://www.asbestos.com

Passion is a Virtue

I gave a talk the other night for the Women’s Wellness and Cancer program at Northeast Health. I talked about the value of an unbalanced life and the importance of passion.

As much as we yak about balancing our lives, and every woman’s magazine proposes strategies to get more balance in our lives, I don’t think it’s balance that we want at all. What most of us want is to feel good and to have peace, and that really comes from being well used by life. And that comes from PASSION.

Passion often gets a bad rap. The first error is that we immediately think of passion as sex, and while yes, I do prefer my sex to be passionate, the passion in sex doesn’t come from body parts being rubbed together. I think that people who have passion in their lives tend to bring that passion into the bedroom (kitchen, living room, back seat) rather than the other way around.

I write about cancer and sex and caregiving—because I got so mad and so passionate about wanting to share what I had to learn the hard way. I am –you see from this blog—fierce about teaching and language and making information about sex accessible to people in CancerLand. I have a couple of other things in my life that I am crazy passionate about and it is the fury and joy that I derive from that work that I bring to my bed and to John as my lover.

The other huge mistake we make in our thinking about passion is that we often think that passion is not a higher virtue. We think that things like charity or kindness are on a higher plane or that they are more important. But we are so wrong about that. Every religion advocates that we become more compassionate but we can only become compassionate by connecting with our own passions. Trying to exercise compassion without true personal passion always looks smarmy and feels like saccharine, and it’s the route to burn out.

The other night in my talk in Troy I mentioned Susan Sarandon as an example of a passionate woman—on and off the screen. There are so many beautiful actresses and pretty movie stars but Sarandon shines in her sixties because she lives a deeply passionate life as a fierce social justice advocate. That is true libido—strong life energy—passion first in the world, then in the bedroom.

Poetry Month: Raymond Carver

Do you remember the moment when you heard, "It is cancer"? Raymond Carver shared this moment from his life and his cancer in his poem,

What the Doctor Said:

He said it doesn’t look good;

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them.

I said I’m glad I wouldn’t want to know

about any more being there than that

he said are you a religious man do you kneel down

in forest groves and let yourself ask for help

when you come to a waterfall

mist blowing against your face and arms

do you stop and ask for understanding at those moments

I said not yet but I intend to start today

he said I’m real sorry; he said

I wish I had some other kind of news to give you

I said Amen and he said something else

I didn’t catch and not knowing what else to do

and not wanting him to have to repeat it

and me to have to fully digest it

I just looked at him

for a minute and he looked back it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me.

I may have even thanked him habit being so strong.

--Raymond Carver

The Easter Brother

I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny.  In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”.  As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first.

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”.

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope.  It was not a hope of miraculous recovery for  either brother,  or necessarily for a reunion in the “Great Beyond”, but  hope for  my  own  “arose” from the heartache of losing my  brothers,  my playmates,  co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries.  Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed.

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk.

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any  theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through layers of loss and gain.

April is Poetry Month in CancerLand Too

April is Poetry Month so, “Let us remember…that in the end we go to poetry for one reason, so that we might more fully inhabit our lives and the world in which we live them, and that if we more fully inhabit these things, we might be less apt to destroy both.” –(Christian Wiman)

For this Poetry Month I’ll be adding some poems about cancer and caregiving. I hope you’ll make them part of your prayer and meditation and that you will share them with others who are living with love in the time of cancer.

We begin with Marie Howe who reminds us to live now, right now, right in the middle of our lives:

WHAT THE LIVING DO

by Marie Howe
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.

Give Caregivers Real Support

Enough already with the pamphlets and the hotlines. Time to ban anyone from saying, "Put on your own oxygen first". Most caregivers know that the plane crashed a long time ago, so cut the platitudes and "You must be a saint," and lets get caregivers some real support within the medical community.

Here is a link to today's column on Caregiver Support:

http://www.timesunion.com/opinion/article/Cameron-Let-s-give-caregivers-real-help-3445761.php

Who Will You Care for? Who Will Care for You?

As a follow-up to the post on March 23rd which paints a picture of all the caregiving that is ahead of all of us here is something that every one of us over 40 needs to be asking ourselves:

Who is going to be my caregiver? And whose caregiver am I going to be?

Factor in the possibility that the person you think will be your caregiver may need a caregiver first--So who is your second choice? And do they know that's your expectation? It's hard stuff to talk about with family and friends but this is the stuff that makes life really crazy when that call comes that says "Mom fell" or "You need surgery" or  "The test results show ...."

Later we'll talk about how to say No.

“Leaning into Sharp Points”- Wisdom for Caregivers

Here is a book review on a brand new book for caregivers and a link to Judi England's wonderful blog on Holistic Health. Take a look:


“Leaning into Sharp Points”- Wisdom for Caregivers

There Will Be a Lot of Old People and It Won't Be Pretty

It still makes me crazy when we talk about curing certain diseases and we don't think about the consequences. We are in the middle of a huge demographic shift at the same time we are in a healthcare revolution. It means there will be an unprecedented number of us living much longer.

Now on the surface that sounds great except that living longer doesn't really mean "living" longer. It means our bodies will survive and we'll have multiple chronic illnesses. Cancer is rapidly becoming one of those chronic illnesses. This means lots of disabilities, lots of ongoing treatments, surgeries, medications and their side effects. And that means every one of us will both have and be a caregiver. That is, in fact,  the emerging model of caregiving. There is no longer a sick spouse and a well spouse but alternating and simultaneous caregiving. That's tough.

Here are some numbers: Cancer deaths now peak at age 65 and kill only 20 percent of older Americans. Deaths from organ failure peak at age 75 and they kill another 25%. The number of Americans over 85 is expected to more than double by 2030. So the norm for aging is becoming a long, extended period of serious illness and chronic disability which will require ever-increasing assistance.

Yeah, I know, happy news? But we spend so much time pretending that aging and dying happen to other people so these facts can help us talk about aging and caregiving and communities and strategies.

Emu Oil and Your Love Life

Vaginal dryness is a factor for all women of a certain age. That's for certain. That age could be 30 if you are postpartum, or 58 if you are postmenopausal, or any age if you are post chemo. Nothing takes the fun out of sex more quickly than feeling like your most tender places are being scraped and torn.

You probably know about lubricants--water-based and silicone based. Try both to see what you like. You can buy them now in grocery stores and drug stores but if you are shy buy them online. If you are over 40 ask your friends. They are using them and you may not know because you are not talking about it.

Recently a friend told me about another sex life saver that is also a daily comfort. It's Emu Oil. Yes, Emu Oil. Uh huh, I did the same thing. I said,  "You mean that critter--the big bird that's like an ostrich?" Yes indeed. Oil from the Emu is magical. You can use it every day on your labia . (I was going to say "down there" But I swore I would not use euphemisms for sex or body parts, especially after so many folks in Cancer Land can't say penis, vagina or fellatio.)

Here is  what I learned that you need to know: It is not messy. You hear the word "oil" and you think, sticky, oily, staining. Nope. the consistency is more creamy or gel-like. It's not oily at all. You don't feel slimy; you just feel nice. No more sandpapery tissues  tearing or burning. And that is also good for your sex life. When we feel juicy and flexible we are more willing to get in the mood even when we are not in the mood.

And after a certain post-40 age sometimes you have to try just to find out that you are in the mood.

You can find Emu Oil on Amazon or lots of online pharmacies.

Bracketology

We love March Madness! One of the first things John and I did as friends was make to brackets and compete with each other. I love the flow chart of it and the guessing (for me it's guessing) and I love marking it up each day as my teams disappear. Most of my criteria are geographic (Pennsylvania and Maryland teams have an edge) and cool names. I always pick Xavier and Murray State just because of the names.

But it's also gotten me to wonder about creating a cancer  bracket. We already kind of have Cancer Madness and that perceptual flow chart thing goes on in the way we think. So what if we laid it all out and said, "Does Breast cancer beat Melanoma? and does Lymphoma trump Colon?" and which cancer is at the scary center: Ovarian? or sure fire, always a killer, Lung Cancer?

Las Vegas would join in for sure. And we're doing this in our heads, all the time, anyway.

Basho on Ancient Caregiving

On the road from Palm Beach….

On this trip I’ve been sampling Kindle’s new short pieces of writing and read Jane Hirschfield’s wonderful essay on “The Art of Haiku” and Japanese haiku master, Basho.

Basho—poet, samurai, and Zen master—wrote and taught in the 1680’s. So when, in her essay, Hirschfield writes about his emotions struggles caring for family I sat up and said, “Wow…even then caregiving was hard.”

In describing his later years when he was caring for an ill nephew and was frequently sought out by more students and fellow poets for help (haiku in its Basho perfected form is a kind of spiritual/psychological process)…. Basho wrote:

“Crushed by other people’s needs, I can find no calmness of mind.” This from a Zen master! After the nephew’s death Basho shut himself off for a year to recoup his peace of mind and his own health.

Caregiver stress in the 1690’s. That helped me to see—again—that it is a human phenomenon—not a personal weakness or a feature of modern culture.

Letting Go

There is so much letting go to practice. Cancer Land brings letting go of John, his health, his doctors, the outcomes--many little outcomes (tests, appointments, complaints)  and the big one--death. But there is so much more letting go I have to practice and so much of it is about other people.

I've read more than a dozen books about letting go and I can't count the hours and dollars of therapy. I don't discount any of that. It's helped and it's moved me forward and it's also made me more aware of how much more I need to let go. Melody Beatty is my favorite writer on this topic. She writes about addiction and recovery and codependency but "letting go" is the theme.

To be able to let go I have to be able to let go to something else or into something else. For me that something else is God, so I realize how much I need that relationship, and to have that relationship I need spiritual practices in my life.

I'm grateful that I have friends who I can talk to about God and faith and prayer and meditation. Last night I had one of those conversations with a good friend. We talked about our relationships, the ones with real live men and the ones we have with God. That's intimacy.

But this morning I come to letting go again. Maybe letting go of other people and what they think  is a spiritual practice. I can say the words. I can pray for help. But my behavior tells me where I really am.