Volunteer Caregivers

I’m getting ready to give a talk to a group of people who are volunteer caregivers. The organization is CareLinks and they serve Clifton Park and Saratoga County in upstate New York. The volunteers help their sick or older neighbors by giving rides, cooking, shopping and doing errands. The simple, basic, almost invisible stuff of daily life that can bring a family caregiver to their knees when they can’t do it.

I spent so many years caring for ill and dying family members that I know the gift of a friend who will grocery shop or drive to a doctor’s appointment or the one that saved my butt years ago when I was caring for two sick brothers: pick up my dry cleaning. Yes, it was that simple and singular but it saved my sanity—and probably my job.

There are now many organizations across the county that recruit, train and assign volunteer caregivers. Many come under the umbrella of “Faith in Action” groups. They are not necessarily people who are active church goers or parts of a traditional faith community but they live faith in humanity and they demonstrate their faith by giving back. In our Greater Capital Region in New York, CareLinks and Community Caregivers are two organizations that do a fabulous job of making the caregiving experience a great one for the volunteer and the family on the receiving end.

Service is gratitude in action. I am so grateful.

Cancer is so 19th Century

Read today's New York Times article by science writer Gina Kolata about why the word "cancer" may be on its way out:

http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html

Standing By

I have a cold that I can’t shake. Everyone I know has or had this cold and all my hand washing, zinc lozenges and vitamin C did not save me. But I’ve been fighting this like crazy because today I was giving a talk on my book about military mental illness and I really, really wanted to give that talk. I love talking about the men—the China Marines—that I interviewed for this book and their stories of survival. But this dam cold and constant cough--I knew I was in danger of my voice simply disappearing mid-sentence.

So I prayed--for God’s will and acceptance--and to get my ego out of the way. What mattered was that the stories got told and that the China Marines –Donald, Frenchy, Gene and Bones--lives got witnessed. Then it hit me. I could ask John to go with me, and he said yes. He would read if I couldn’t.

I loaded the podium with hot water, throat spray and cough drops and I explained to the audience that my husband might step in to read if my voice disappeared. John was standing by.

I read for the whole 55 minutes. I told the stories of men who served and survived and thrived—men who were my teachers. And after I finished reading I opened my mouth to say “thank you” and my voice was gone. It was a gift to be able to give the talk and John was beside me to take over.

Powerless

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.

Where is God in Cancer?

This has been on my mind this week. How do you find God in cancer? Yes, we die and cancer is one of the mechanisms, but living in between the diagnosis and the death there are a lot of choices. It seems that there is a continuum with “offer it up” and long-suffering on one end and “there is a no God and fatalism (and a different kind of suffering maybe) on the other end. But maybe there is a surrender --with action --in the middle. That would not look the same for two patients or two caregivers.

Where, for each of us, is how we treat cancer, accept treatment, refuse treatments, or fight it? If God’s will is what is then is fighting cancer fighting God’s will? How do we practice acceptance when it means accepting cancer and death?

Zumba!

I am tired but energized by lots of exercise today. I went to a Pilates class and then on to a Zumba dance fundraiser. I had a small fantasy of dancing for hours but no. One hour of Zumba was plenty. But the nice thing about Zumba is the laughter—no mirrors, no perfectionism, no right and wrong just “keep moving”. It is a sexy exercise—Latin and African music, lots of hips swaying. Women of every size and shape which also inspires.

While I danced John watched football and did the grocery shopping. Yea! Now I’m working on a talk for caregivers coming up in December—can I bring that feeling of energy and acceptance I get at Zumba to cancer caregivers?

Tonight we have Veal Dorato and Graeters ice cream. It may undo the benefits of Zumba but it’s also time for pleasure—of all kinds.

My Turn to Worry?

Even as I write this I think, “Do you really need this to be about you?” But I flunked my blood tests. Again. Twice in one year. Well, not flunked exactly, but a C-minus. Not enough white blood cells. It’s called neutropenia. I Googled like crazy and sad to say, it’s a kind of boring disease. They use the word idiopathic a lot which basically means “Who the fuck knows”.

It’s not like leukemia—I went there first. I mean I came of age with Ali McGraw and “Love Story”, so every girl in her fifties remembers the dream to die so beautifully and with the perfect camel coat. No, leukemia is too many white blood cells. I have too few. It’s like low self-esteem of the blood cells. Figures.

Last year when my tests came back like this I was sentenced to six weeks of blood tests at the hematology center and the doc said, “Yep, you have low white blood cells.” So I’m not overly impressed.

But way, way in the back of my head is a little voice that whispers, “This is how it starts.”

Stranger Than Fiction

Last night was a great Friday night at home. I stirred up Cajun steak tips and sweet potato fries. Almond Joy ice cream for dessert. And then we watched my all-time favorite movie: “Stranger Than Fiction”. I love, love, love this movie. I watch it at least twice a year and it’s new every time.

“Stranger than Fiction” has the most amazing cast: Emma Thompson, Will Ferrell, Maggie Gyllenhaal, Queen Latifah and Dustin Hoffman and it’s about everything: literature and art, careers and creativity, and especially about death and love and taxes. It has one of the funniest pictures of a stuck writer I have ever seen and one of the greatest, most poignant love stories. And it’s about death. Facing death, accepting death. (That’s why I need to talk about it here.)

This movie makes me believe in art, in love, in courage, and in the sweet strangeness of human beings. And in cookies.

Guys: this movie sets the bar for how a man can win a woman’s heart with a gift. And ladies: Maggie Gyllenhaal’s handbag --and her arms, oh, her arms. Makes you want to do pushups over and over and over.

Stranger Than Fiction. It’s on Netflix.

The Big--Happy--O!

Ok, here is one wild sex fact. (And more evidence for why we should be talking about sex in CancerLand.) Today I read an article about women and orgasms in the November/December issue of “Healthy Life” magazine. I read this: “Gordon Gallup, Jr., a psychology professor at SUNY Albany found that Prostaglandin, a hormone present in semen, is a natural antidepressant.”

It continues, “In a 2002 study of nearly 300 women, Gallup found that those who frequently had sex without condoms had significantly fewer symptoms of depression than those who were not regularly exposed to semen.”

Wow. Imagine the pick-up lines. “I just want to make you happy, baby.” And do you like that careful wording, “exposed to semen”. Prozac, Paxil or BJ?

Day of the Dead

Today I celebrate Dia de los Muertos, or Day of the Dead. It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.

I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”

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 brothers I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.

Though they died several years ago my feeling about my brothers is that I have misplaced them; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?

Trick or Treat

John was being grumpy about the kids coming to the door. “Stupid Holiday, stupid” every time the door bell rang. . Grumble grumble…so I went into the bedroom, changed into black lace stockings and put on my trench coat.…I went out the door and said over my shoulder, “If any kids come please answer the door and give them the candy.” Grumble grumble… then I went outside counted to ten and came back and rang the bell and when John opened the door I yelled “Trick or Treat” and flashed him.

A new attitude!

Caught in the Middle

76 million of us Baby Boomers. That means a lot of sandwich generation caregivers. We are taking care of parents, sometimes grandparents, children, grandchildren, step children and spouses. We live longer but the fine print that accompanies that good news says that we live longer with more illness and more—multiple—disabilities. (Of course we; do you can’t live longer without stuff happening to your body.)

So where is the good good news? It’s this: There are a lot of us and so we have colleagues and peers and can have companions if we seek them out. Our friends are caregivers too and we can support each other and trade information. We can take turns driving, shopping and listening. We can volunteer. We can commiserate.

We can’t change life and we can’t change death but we can help each other.

Oh God!

The downside to being an atheist is that you have no one to cry out to in the throes of an orgasm.

Obituaries

I read obituaries every day. I have since I was in my twenties. I think of them as little stories, very, very short novels or Haiku lives. But recently I’ve been keeping score of how many of the regional dead are in their late 50’s or early 60’s—our ages—me and John.

I think again—“People my age and John’s age die every day.” And they are not extraordinary deaths, just regular ones from illness and disease and cancers.

I try to use this in a positive way. To remind myself to live my life—mine and not someone else’s idea of my life. To choose my day and –maybe I can’t completely choose what’s in that day --but to choose my attitude about that stuff. To include more of what does matter to me in this day and less of what doesn’t.

I don’t want to die on the day that I was obsessed with who didn’t like me or on the day that I kept trying to please someone else.

Loves Long Walks on the Beach

This weekend felt like a good Hallmark card or a bad Match.com posting. A beautiful fall weekend on Cape Cod. On the drive there we laughed listening to Tina Fey “Bossypants”. Ate steamers and fried clams and blueberry pie. John did chores. I hit the jackpot at TJ Max. And we had long, long walks on the beach. Holding hands. Laughing. We saw a friend’s new house. Went to the movies. Felt so grateful for our lives. This is one of those times when it feels like the clouds parted. I feel grateful for every struggle and every minute of therapy that got us here. Not that I want to relive any of it. No, but I do love long walks on the beach

My Dead Friends by Marie Howe

I have begun,
when I'm weary and can't decide an answer to a bewildering question
to ask my dead friends for their opinion
and the answer is often immediate and clear.
Should I take the job? Move to the city? Should I try to conceive a child
in my middle age?
They stand in unison shaking their heads and smiling-whatever leads
to joy, they always answer,
to more life and less worry. I look into the vase where Billy's ashes were-
it's green in there, a green vase,
and I ask Billy if I should return the difficult phone call, and he says, yes.
Billy's already gone through the frightening door,
whatever he says I'll do.

-- by Marie Howe

Vagina

Words—it’s all about words. Language is what creates our reality, and language is what allows us to think. Think about that. If you have language, you have power and in CancerLand we need all the power we can get.


Words really do matter. That’s what got me started on this journey of writing about sex and intimacy and cancer. I had to write out my frustration because of all the words no one would use with me and John, and because of the words they did use that made me crazy.

But it’s not just in CancerLand. Our culture is inhibited about sexual language and even anatomical language. Now, I know that most women over 30 think they have that nailed. We do not talk like our mothers or our grandmothers. We have come to a place where we believe that we are so open and forthright; we don’t say “down there” or “pee pee” to refer to our genitals but we have raised a huge group of young girls who think their whole genital area is a vagina.

No! That is not your vagina or your Vajayjay—sorry Oprah. Most of the time we are mislabeling the mons, vulva, labia and clitoris, with the equally euphemistic vagina.

And that is a problem in CancerLand and in women’s lives. To think we need words and to have intimacy we have to have words. So what are we gonna do about our words?

The Pig in the Python

We, the “Baby Boomers”, were born between 1946 and 1964. Nice numerical bookends to remember who we are. I was born in 1953 so I’m nicely embedded in the center of this large, unruly, and predictable but independent demographic group. We are—according to demographers-- the “Pig in the Python”—so named because they can watch us move along the lifespan and longevity track.

Yes, we know there are so many of us and we know the benefits. Wish for a more comfortable shoe for your middle-aged feet? Ten new brands. Want a vacation geared to an aging but not willing to admit it body? Thousands to choose from.

But here’s a fun fact to pause and think about: Our big group is aging together and we are getting—and going to get—disabled together, and we are going to have more and more and more cancer together. This is the consequence of our “Boomer Bump” combined with better healthcare. The longer you live the more cancer, and more likelihood of cancer, you’ll have.

So we all have a very selfish and very altruistic reason to care about cancer. If you too were born between 1946 and 1964 cancer is coming soon to a body near you.

Steve Jobs: How to live before you die | Video on TED.com

Tonight I watched this video of Steve Jobs at Stanford and loving hearing him talk about doing what you love and embracing death every day. That is a great way to love in the time of cancer. Click on the link below to see and hear this 12 minute talk:

Steve Jobs: How to live before you die | Video on TED.com

Steve Jobs

I am sad about Steve Jobs. He died yesterday from pancreatic cancer and its treatment. I didn’t know him—my only connection is an I Phone and a laptop. But he was 56 and smart and talented and fierce.

Maybe too, his death is a reminder—again—that we die. And that no amount of money, access, power or even the best healthcare in the world can beat death. We die.

I’m also saying to myself, “Oh Diane, get this, please get this, people my age and John’s age die every day--and death at our age is not extraordinary, so really, does work or money or who doesn’t like me really matter?”

I know that the answer is “no”. But living it—that’s another matter.