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.

Art and Death: Holding Our Own

I watched this extraordinary documentary with three good friends this week. I had seen this film in a class on Caring for the Grieving last year and I was so moved I had to have my own copy. I tracked it down and made a movie night. It’s not everybody’s idea of a chick flick—but really, in a sense this is the ultimate love story and a heartbreaker that makes you happy to cry a lot.

Holding Our Own is about fabric artist Deidre Scherer who creates  “paintings” from her real life sketches of people who are dying. Her work is extraordinarily beautiful and her craft amazing in the ways she creates super-realism in portraiture using layers of fabric. But the other beauty is her belief in and her philosophy of the role that death plays in life.

The second focus of this film is the Hallowell Chorus in Burlington Vermont. Hallowell is a group of amateur and professional singers who volunteer to sing at deathbeds and in hospitals with people who are near death. Again, no, it doesn’t sound like fun but in fact this is stunning.

Watching this extraordinary film with close friends led us to an intimate conversation about our beliefs in life after death, and what we might like for our funerals and our desires for the way we’d like to experience the end of our lives.

Holding Our Own was produced by Paul Newman and it’s available from Netflix or can be purchased on Amazon. It’s a fabulous intersection of creativity and death—which is to say generation-- or life and death.

Why Doctors Die Differently

Look at this article from Sunday's Wall Street Journal. Doctors--even those that treat cancer--make different choices than their patients. Because they know some stuff. This is a great reminder of a key concept in cancer caregiving and care. A doctor will only answer what you ask and you have to ask very specific questions to get very specific answers. If you say, "Will this chemo help me?" the answer might be yes. But if you ask, "Will this chemo specifically and significantly improve my life expectancy and quality of life?" the answer might be different.

Read this. Food for thought.

http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html?mod=googlenews_wsj

Why Women Love Bull Durham

The past couple of nights I have been watching Bull Durham. This is the movie from 1988 with Kevin Costner playing an aging catcher in the minor leagues. This is a movie that appears to be about baseball life with its travails and hopes and the desperate desires of men who want to play ball for a living. It is seemingly a men’s movie with all the swearing and ass slapping and drinking and real life baseball lore. But no, this really is THE all time best chick flick.

Yes, we love Kevin Costner from the first moment he arrives in the locker room wearing his navy blazer, rumpled white shirt and the khakis that are the perfect shade of tan with a hint of olive. He’s a manly man who in the first 20 minutes gives the fabulous, if too artful, monologue about his beliefs which includes, “I believe in the cock, the pussy, the small of a woman’s back…that the novels of Susan Sontag are self-indulgent, overrated crap”, and which ends with his belief in “long, slow, deep, soft, wet kisses that last three days”.

Yes! You had us at “long, slow and deep”—and yes, at the Susan Sontag critique too.

But there is a later scene that truly outs women for what they really want.“Do you want to dance?” Sarandon asks Costner, sitting in the kitchen late at night. He says yes, but surprises her by not dancing but instead by sweeping all the food and dishes off the kitchen table onto the floor. He spins Sarandon onto that now empty table and they go at it rolling and clutching.

Oh, that’s part of it. We want a man to want us that much; we want a man who wants to make love a second time so much that he goes for it on the kitchen table. We do want that kind of passion in our lives. But, there is something else in this scene that truly makes this a women’s dream come true.  What most women truly desire is not what Costner does, but what Sarandon does NOT do. As all of her dishes and the leftover food crash onto the floor Sarandon allows herself to be swept onto that table instead of diving for a broom, or a dish cloth or saying to her lover, “Hold on just a second, I’ll clean this up and then meet you in the bedroom.”

No, she is in the moment and desires this man and this sex more than she desires a clean floor or neat kitchen. She wants the rapture of this man and his body even with cereal and milk oozing under the fridge. And she is not saying, “Oh God that was my mother’s china bowl.” Nope, she’s on that table fucking her brains out.

Oh, to be that kind of woman. We assume the power is in the man, that to be taken that way would free us. But what we see in Bull Durham is a woman who CAN be taken. She is not a woman thinking, “When did we last wash these sheets?” while a man is going down on her.

Oh, we do wish for a partner to love us with such sweet abandon, but Sarandon, in Bull Durham, shows us a woman who can abandon herself. 

Dating in CancerLand

"Dating and Desire"--Here's an article that appeared in several papers yesterday. The topic is dating when you have cancer. It's a young people's issue and a not-so-young-people's issue as well.  If married sex with cancer is hard to talk about --think about this. Maybe send this link to your favorite oncologist and say, "Come on!"

Click on the link below to read more



http://www.newsobserver.com/2012/02/20/1872402/disability-and-desire-how-to-navigate.html

The Cottage Weekend

This weekend we made our pilgrimage to The Cottage in Lenox. It's an annual trip and an anniversary celebration. Each year it's a measure of how we are. We have gone there in terror (year one), in joy, in exhaustion, in lust, in chemo and in total silliness (my favorite).

Each year we pack a huge bag of books, magazines, and the Kindle. And even tho the owner of the B&B feeds us well we take extra desserts (cannoli) and extra breakfast (scones). And I take my red licorice (and some red lace). Then we lock our selves in for 2 and a half days of reading and relaxing.

On the way home we hit the used bookstores in Lenox, Stockbridge and West Stockbridge for more books. This year my great find was a first edition of "Death was The Other Woman" by Linda L. Richards. How could I pass up a title like that?

Six Month Madness

Yesterday was John’s six-month oncology visit. As before, I am unsettled for the few days before then very calm the day off. Prayer pays off. This time it was blood work, the poking and prodding, the euphemistic avoidance of talking about any bodily functions.

I feel like an old hand at this. But still I feel the anxiety in the air in that strange waiting room. There’s a sense of who is new and who is a regular and those that are back again.

The test results were mixed. Fine, passing fine and “we’ll have to see”. It takes at least five days for the “cancer marker” to be cultured and read. So now I really feel some worry. Funny name, “cancer marker”. I imagine a cartoon thermometer that has “You Gonna Die” at the top and gradations of life and pain along the way up. It’s really a protein test that signals, “more tests needed” but that name: Cancer Marker.

Here’s the hard part. When we get to this place each time (or when his cough won’t go away, or bathroom breaks take too long, or when he is tired and my imagination goes right to Big C—Part II) I have a kind of selfish dread that is hard to talk about.

When John’s cancer adventure began we were so caught off guard. He was in good health, we were newly weds, life was good and the cancer process came on so hard and fast—doctors and surgeons and hospitals and chemo and pumps in the night and emergency buzzers going off and learning to insert all kind of things in all kinds of places. It was fear but there was also so much adrenaline that overran thought or process. He did it, I did it, we went thru it. We ate all the lasagna and returned very dish. I cried a lot but mostly I had a big-eyed stare and a Doctor Sardonicus grin stuck on my face. It was new and we had no choices. And neither of us knew how hard it was going to be. It was one day at a time for 15 months.

But now, looking back I am horrified by the cost and the pain and how we both ached thru that process, so when I think, “here it comes again” it is worse. Now I know what chemo means for colon cancer and what it means for both people to live day and night with that FU pump and the sheer grief and logistics of it all.

Neither of us had time to tell anyone how much pain we were in—shared and privately. It’s taken this long to be far enough away from it to really tell each other.

So when we go back to the oncology center I have the terrible thought: Can I do it again?

Those are the caregivers I feel for. The new ones have a kind of shocking adventure race to run but the ones coming back again and again also have the shame and pain and grief of the silent question, “How can I do this again?”

Cold Hands Warm Heart

I wake in the night and listen. The reassuring rumble tells me that the furnace is still on. It’s good news and bad. It means we have heat and there’s still oil, but at this hour I visualize the dollar bills that might just as well be fuel.

I don’t fall back to sleep easily. A glass of water, and check on the dogs, curled like Danish pastries on their pillows. I’m awake and afraid in the cold night. My fear of cold has an ancient echo. I listen for the furnace at night the way my Polish ancestors woke in their huts to check on the fire.

With only 29 days, February is the longest month, and we secretly count it down.  February is to winter what Wednesday is to the workweek: If we can get through February, even snow in April won’t rock us. 

In many wedding albums there is a picture of the groom carrying the bride over the threshold. That odd custom is also about staying warm. In ancient times when a woman left her father’s home and was set down on the hearth in her new house she was in the most important spot in any ancient home. She literally kept the home fires burning. 
 

Temperature is part of my own married romance. Coming to New York from Baltimore –where there is just one decent snowstorm each year--I too was set down on a new hearth. I married a man who comes from Northern Ontario where winter runs from September to May and wind chill is scoffed at. “When Canadians have 30 below, they mean it, he says; “Wind chill is for wimps”. 

So to marry this tundra man I had to learn to dress for cold. To get me from the Inner Harbor to the frozen Hudson he plied me with jackets and sweaters, scarves and gloves, even a hat with earflaps. 

But physical acclimation is real. That first winter, living in upstate New York, I thought I’d die. My boots were good below freezing but my fingers could barely tie them. Each year it gets easier. Now I complain about the cold, but no longer imagine myself part of the Donner party.

But there is also an emotional acclimation to cold. A quote of Camus is taped inside the cabinet where I get my coffee mug each morning. It says: “In the depth of winter, I finally learned that within me there lay an invincible summer.” Some days that tells me that I have enough beach memories to cling to on the slippery slope of February, and other days it is the word “invincible” that reminds me that living cold does indeed build character.

But having a warm house is important. I can’t swear that my first marriage ended solely over the thermostat setting, but for years I never went on a second date with a man whose response to my “I’m cold”, was “Put on a sweater”. Now I’m married to a man who knows that cold hands do not mean a warm heart, and that a big oil bill is better than roses. But surprisingly, I’ve grown too. I am willing, in this new life and climate, to go and put on that cost-saving sweater.

The word comfortable did not originally refer to being contented. It’s Latin root,  confortare, means to strengthen. Hence it’s use in theology: the Holy Spirit is Comforter; not to make us comfy, but to make us strong. This then is February’s task. We may not be warm but we are indeed comforted; we are strong and we are counting the days. 

Sex is Good

Well, that's the message of the article in today's Times Union by health advocate Lynda Shrager. In this perfect Valentine's Day piece she makes a strong case for more sex for everybody. What's never quite clear in stories like this tho is whether "sex twice a week" means orgasm twice a week. We know that you can have a lot of sex with out both partners having an orgasm. So does the one who comes get all the health benefits?

And if that's true do the benefits accrue if your "partner" runs on batteries? That's the problem with euphemism; we are left in the dark even when the lights are on. But to be on the safe--and healthy--side go for the O on Valentine's Day.

Here's the link to Lynda's column. Her health advice is always great so do bookmark this one:

http://www.timesunion.com/living/article/It-feels-good-and-does-you-good-3247062.php

Free Legal Services at Albany Health Law clinic

Here is another regional resource for individuals and families dealing with cancer. Experienced health advocates and second and third year law students staff the Health Law Clinic at Albany Law School. They can advise and guide you on issues that range from disability rights, employment law concerns, securing benefits and the rights and supports for caregivers.

The services are free.

For more information call: 518-445-2328 or look at the Albany Law School website: www.albanylaw.edu

Cancer and Careers Conference

As a cancer patient, survivor or cancer caregiver you know the struggle of keeping a job, balancing treatment and work responsibilities, juggling caregiving and work responsibilities and dealing with bosses, coworkers and yes, the doing the work itself. "Cancer&Careers" is a national organization that is a resource for patients, caregivers, family members and employers.

The National Cancer and Careers Conference is June 22 in New York City. The conference is free, there are travel scholarships and it's one day jam packed with information and support.

Here's the link: Consider sharing this with your boss, coworkers and your Human Resources Department.


http://www.cancerandcareers.org/en/community/events/conference

Young Adult Cancer in Fiction

Two new novels with stories themed around cancer are new releases. What's remarkable is that they are both very good novels apart from the cancer storyline and from the fact that both are published in the Young Adult category.

Likely the publishers booked them as "YA" books because the main characters are teenagers but be assured these are powerful, well-written and emotionally mature books. Yes, they are great reads for folks you know 13 to 18 who have a friend with cancer or who want a serious, non-vampire read. But they are also for those of us who love a good novel, with complex characters, engaging narrator, and great writing.

They are:

"The Fault in Our Stars" by John Green   and

"The Probability of Miracles" by Wendy Wunder.

Add these to your library list or get them at your local independent bookstore--in our Albany Capital Region that is The BookHouse at Stuyvesant Plaza in Albany or Market Block Books in Troy.

Event for The Capital Region Hope Club Friday February 10th

HopeClub of the Capital Region & The New York State Capital District Alliance for Women in Media invite you to the 2012 Benefit Gala.

LIVE: HAIR OF THE DOG 

Tickets are $40

Please RSVP by Wednesday, February 8th to:
www.cancer.org/hopeclub OR call Mary at 518-454-4006

Complimentary Champagne Toast & Wine Tasting
Hearty Hors d'oeuvres
Carving station, Pasta station
Dessert, coffee/tea, cash bar

Sensational Silent Auction!

*Cash, Check or Credit Card accepted. Business Attire. Walk-ins are welcome!

How We Survived Prostate Cancer

I mentioned Victoria Hallerman’s book, “How We Survived Prostate Cancer”, last week. It jumped off the shelf into my hands at the local bookstore because of the word “We” in the title.

She had me at “we”. Victoria is a wife, and her husband has prostate cancer and the book is about both of them as they go through this experience. That’s been something I care deeply about and why I write and speak about relationships and cancer. I see how often spouses and partners are left out of the equation by the medical community. Yes, there’s that obsequious nod to caregivers in the magazines and by professionals –but we’ll know they mean it when caregiver services are part of the deductible.

Hallerman’s book is terrific. The subtitle also tells you a lot: “What we did and what we should have done.” So as you can guess, she tells their mistakes, missteps and shares a lot about the hard parts they had to go through. And she writes a lot about their sexual experiences and sexual consequences and the cost and gain to their marriage—and she does not sugar coat it. A man with no testosterone and extra estrogen is not sexy, and when he is also incontinent, grouchy and physically ill—for a long time—it’s not a made for TV movie romance.

But that is what makes me love this book and Hallerman. I know that cancer and caregiving are not made for TV movies. Those movies hurt more than they help. But truth, honesty, humor and woman-to-woman talking have always helped me.

Yes, the book is about Hallerman’s experience with her husband’s prostate cancer but this book and its ideas translate immediately into any other cancer diagnosis. It’s about what they did and didn’t do as a couple and the medical and emotional costs of those choices. This book will be valuable if your cancer is breast or brain or lung or colon. If you have a partner in the battle read this book.

Coaches Verus Cancer

Coaches Versus Cancer basketball tournament today in Albany. At the Times Union Center. Games all day..entertainment, food, cancer services info and expo....Yes-- a fundraiser for cancer. More details at the link below:

www.capitalcoachesvscancer.org/basketball-events-highschool.cfm

50/50

Maybe like me you put off watching the 2011 comedy/drama 50/50. I didn’t watch it for a year. I assumed it was either a sappy, tearjerker about cancer, or a gross, expletive-deleted, Seth Rogan 20-somehting boy story. I didn’t know, and didn’t realize, it was both.

Watched it last night and we laughed and cried. Yeah, John too. I am glad I didn’t see this at the movies with friends though. Not because the cancer scenes cut so close to home but because there is one boy-to-boy discussion of girl friends and sex acts that made me blush. If I saw this movie on a first date I’d leave the theater in sunglasses and go right home.

But, we’re not dating, we’re married, and we've done that sex act many times, and I’m laughing as I type this, Ok it’s funny.

And yes, Seth Rogan is mostly a pig but, a pig with a heart for friendship and some insight into how guy pals talk and fight and love each other. Yeah, the movie is a love story and –spoiler alert—the love object is not Anna Kendrick.

I would put 50/50 in my top three cancer movies. Check it out. But not on a first date.

Tips....so to speak...For Prostate Cancer and Sex

I could not pass this up. The link below is a resource for couples dealing with prostate cancer. And, yeah, its about sex in CancerLand. I just love the directness and reality of these suggestions. I found this on the website of writer Victoria Hallerman, author of "How We Survived Prostate Cancer". Yeah, she says "we"...thats what caught my eye when I was scanning the cancer section of the local bookstore.

I love her book, and will say more about that tomorrow. For today check out the tips on the link below:


http://www.phoenix5.org/companions/10Pointers.html

What You Believe In...

A quote that I love goes like this: "What you believe in must be bigger than what you are afraid of." I heard a woman named Kim Klein say that in a conference on fund raising many years ago. She was telling a story about how she overcame her fear of solicitation--asking powerful people for money. She said that one day in a fit of terror, about to approach a big CEO, it hit her that she really did believe in the women she was trying to help at her DV shelter, so that had to be bigger than her fear. And her fear decreased that day.

I have applied that quote in my life many times: at work, in relationships, in social settings and now I'm thinking about health and wellness and cancer. Do I believe in God? Goodness? the power of the body? the balance of the universe? Ok, can I remember that when I am afraid?

This week a friend who knows I love that quote pointed it out to me again. I have been wrestling with my passion about caregiving and this cancer advocacy work--do I dare put myself out there? really step up to the plate, and the microphone, with Love in the Time of Cancer? And my friend Martha said, "Diane, what you believe in has to be bigger than what you are afraid of."

My own advice to others hiding in plain sight. That makes me believe in God. And his sense of humor.

When I am the Patient

Oh humility; oh arrogance. This week I am the patient. Eye surgery this week. And my first inclination is to tell you it's no big deal. There, right there, it begins. The comparison, "Well, it's not cancer"; "Well, it's not brain surgery". Oh Jeez--it's eye surgery--my eye balls--my vision.

Here's what I'm learning: It's so hard to sit still. I'm supposed to rest, take it easy, no stress. Well, this has totally outed me as a workaholic if I had any doubts. I'm also supposed to use four different medicines four times a day and my first reaction is: "What a hassle, must be someway I can condense this?" No, I have not been to medical school but that does not stop me from thinking those instructions are for other people, surely not me. That is a form of arrogance, not to mention stupidity. Did I mention these are my eyes, my vision, I'm playing with?

And for good measure lets add vanity to the humbling mix. I cannot wear makeup for a week and I cannot take a shower for a week and I have to wear big, dorky dark glasses at all times even at night in bed. Actually with the no make-up rule and the no shower rule I'm glad for the glasses.

And oh yeah, I'm not supposed to use the computer too much. But, hey, you can see how well that is going. :)

The Swerve and Pleasure

I am reading the new book, “The Swerve” by Stephen Greenblatt. “Swerve” won the National Book Award in 2011. Its subtitle is “how the world became modern.” It is terrific and its about the Renaissance and intellectual history and theological history and intrigues of ideas and books. Greenblatt’s earlier book, “Will in the World—How Shakespeare Became Shakespeare” was also brilliant and a finalist for a Pulitzer. 

Now I just love this kind of chewy, rich, idea packed reading and I love to grab as much history as I missed in my earlier education—I was in the girl’s room smoking for many history classes I guess—or passing notes about cute boys.

But the reason I want to mention “The Swerve” here is not as a book review—though yes—grab this book. But this book belongs in a story about sex and cancer because Greenblatt explains with a clarity I have never read or heard—why we are so body-denying in our culture. In telling this story of how our thought changed and books were embraced and denied and rediscovered and hidden again he describes the church and intellectual shifts that took away belief in the body as a good thing and in God as a giver of pleasure and how that became disastrously distorted and left us—Western Civilization and Christians in particular --ashamed of our bodies and pain seeking rather than pleasure seeking.

All of that has contributed to shame about bodies, discomfort with talking about our need for and right to pleasure, and bonus for us in Cancer Land: a faint underground belief that illness is punishment. What a set up and what an intellectual and cultural crime.

Gong Show

I am open to all kinds of healing and it's always my hope that I can find healthcare practitioners who respect and integrate Eastern and Western practices. Years ago I studied Reiki and have used it-quite irregularly--to help myself and others. It's one of those things that you can believe or not because its all to the good, especially when combined with good healthcare practices.

Last night I tried something new called a Gong Bath.  Nope, no getting naked or cold. Gong Bath is done with a group of people who lay or sit comfortably while being "bathed" in the sounds of huge (really huge) Japanese and Tibetan gongs. The lights are low, the sounds are not loud at all but you can feel the vibrations going through your body. There was a very brief intro--kind of like a verbal meditation instruction--Relax. Breathe. It was very comfortable and very comforting.

We stayed with the gongs "bathing" us for an hour and then some more brief verbal instructions to return to the present and the now. At the close the Gong Master explained that the gongs--there were 8 or ten of them--were tuned to the chakras of the body/mind and that the vibrations and sensations are intended to heal and align the chakras.

Even if you tend to roll your eyes at this kind of thing it's worth checking out. An hour after work on a Friday night, a cozy room, loving vibrations soothing to the body and mind--that was a Happy Hour.

Cancer in the Movies

Not so much cancer on TV but we do have some cancer in the movies.  They are few and far between but we can find some. Here’s a list of my picks for top cancer flicks:

          Love Story

1.                       The Barbarian Invasions

3.                       Terms of Endearment

4.                       50/50

5.                       Wit

6.                       Sweet November

7.                      My Life Without Me

8.                      Erin Brockovitch

9.                     The Bucket List

10           Stepmom

What movies am I missing?

Cancer on TV

If we know that one in 5 people has cancer and that cancer touches every family, and that most Americans watch more than 20 hours of TV a week--how come we don't see much cancer on TV?

Doesn't it seem that there should be cancer references and cancer experiences represented on regular TV? Yes, we have the fabulous ShowTime "The Big C" with Laura Linney but what about cancer in Modern Family and South Park and How I Met Your Mother and The Family Guy?

At any moment each of us knows someone with cancer--family member, extended family member, co-worker, in a friend's family etc. Someone has a diagnosis or is going thru treatment. Someone is dying or surviving. So where is that in our TV lives? Shouldn't there at least be a minor character with cancer? a mention of taking a casserole (yes, lasagna) to someone's home? Someone bald or in a chemo-scarf?

Cancer is in our lives, so how about our TV lives?

The Patient's Checklist

This week I read a review copy of a new and very handy book called, "The Patient's Checklist". While ostensibly a book for patients to take with them to the hospital--this is actually a great book for family caregivers and advocates. Elizabeth Baily had the experience of managing her fathers care--some complicated care--and this book grew from her experience.

It is, in fact, filled with checklists to use before going to the hospital and at the hospital and after. Lots of methods for keeping track of who's who and what's what and what comes next.

This is a book that everyone over 50 should have as they care for their parents and siblings and to pass on to their kids who in turn will be taking care of them.

Hooray the Holidays are Over

Countdown to our annual "Hooray the Holidays are Over!" party. Guests in one hour. I love this party because we only invite people we like--no "have to" guests. And we make foods we like and people bring unexpected treats...no booze unless it goes home with the bringer--so a really nice time. But this hour before I am always nervous--the start of a party feels stressful--that pause before it really clicks and people talk to each other.

Each year we get better at doing this party--easier with each other, easier with expectations, easier with what happens. My favorite part is seeing strangers meet or discovering that they have or want a connection with each other.

A new year to be in love, wickedly sexy, full of health and at peace with God.