Sunday, April 26, 2015

Stay Strong,  Eat Well—To Fight Cancer

Yes, after a cancer diagnosis you might be tempted to say F*** It!—and eat whatever you want. And there is a kind of positive fatalism in that….and there may be a place for that kind of crazy binge.

But mostly, when you have cancer, you need to eat well. You need to eat good food and good tasting food so that you simply will eat—that’s a huge issue for folks going through treatment. Nothing tastes good; your taste buds are fried from chemo or radiation. Or you have lost your sense of smell—another wicked side effect—and you discover that what they say is true—most of taste is actually smell. Or you are so dam tired that you not only don’t want to cook, you don’t even want to eat what other people cook for you. 

And don’t get me started (again) on lasagna. I know, your well-meaning friends and co-workers will bring you so much lasagna and variations on lasagna: ravioli, rigatoni, beef goulash. The thought is good—it’s easy to make a casserole and you can (the accompanying note will say this) “easily re-heat this”.  But the truth? Most of it hurts. Mouth sores from most chemo hurt like hell and spicy (even mild) red sauce aggravates it.

But you gotta eat. This is where your caregiver point person must be smart, strong and bold and when asked if someone can bring meals or set up one of those caregiver calendars for meals—they have to be very direct: We want chicken, salmon, shrimp and these vegetables—by name. Or gift certificates to great restaurants for delicious take-out. No, you the patient or family caregiver cannot say that. You’ll sound ungrateful and petty and fussy. (No one is really thinking that by the way, but you’ll think they are.) So the friend in charge of food has to be bold and direct. 

And here is why you need to care about your food:

69% of cancer patients have health issues or disorders beyond their cancer. *

Even a 5% drop in weight in a month can decrease a person’s tolerance for treatment. *

Eight out of 10 people living with cancer are malnourished* which means that they don’t have the needed fuel for the healing process.

So if your cancer care center has a nutritionist take the offer of an appointment for nutritional therapy.  Take every free program. Bring your caregiver and the bold friend who is in charge of your food/meal volunteers.

But go beyond that and also try an integrative health coach who can help you align your diet and nutrition and naturopathic services with your medical and oncology treatment.

*National Cancer Institute 2015

Wednesday, April 22, 2015

Before I Go

The plot for this book seems clever: A young woman is diagnosed with a terminal cancer and has just a few months to live. Before she dies she wants to find a new wife for her husband so that he will be happy and cared for after she dies.

That seems the conceit for a chick flick, right? You can imagine: feisty heroine, selfless love, and the requisite funny, sidekick best friend who is in on the plot. It’s all silly but sad matchmaking, and even a “Terms of Endearment” sad Mom as well.

And in Colleen Oakley’s first novel, “Before I Go”, all of those elements are present. You
might even assume, as I did, that this would be a relatively light-hearted (it’s always relative with cancer and death) book. And it does start out that way.

But then, the writing takes off as the story gets tougher and our happy (dying but sassy) heroine begins to show us the realities of knowing that you are really, really dying.

A scene that I loved: She is telling us about the romance novels that she watched her mother read when she is growing up and how she just assumed that as she got older and her hair got gray that she’d read romance novels too. But then it hits her, “But my hair won’t gray. And my skin won’t wrinkle and I may die without having ever read a romance novel….and this, this! is what makes me start to cry. And it occurs to me that if I were to write a “Coping with Terminal Cancer” pamphlet, this is what I would cover. Not the obvious stuff about anger and bargaining but crying over bodice rippers in a suburban mall at 10am on a Monday morning.”

And the search for her husband’s next wife? Oakley takes us from a silly conceit to the depth of mixed feelings for both partners when a spouse is dying of cancer.

I definitely recommend, “Before I Go.”

Saturday, April 18, 2015

Cancer Complicates Communication at Work

Healthcare is changing. That’s not news. And if you have been dealing with cancer for several years you can track many of the big changes as they have affected your treatment, your co-pays and your costs and your paperwork. 

Oh God, the paperwork!

Olden days: You had health insurance through an HMO and you had co-pays for various services. So much $ for a doctor’s visit, so much $ for a specialist, so much $ when you went “out of network” etc. Then another copay for your medications—there was a range of course, and you learned to ask about brand name and generics.

Then it began to change: Maybe you had a heath savings account—you put money into it  pre-tax and you could spend that down within 12 months for legitimate healthcare expenses. No plastic surgery, teeth whitening etc. But that was the least of your worries-unless you needed plastic surgery to realign some things that got moved around with cancer surgery or your chemo left your teeth gray. (Then you appealed and debated and probably lost your appeal.)

If you wanted massage, acupuncture or chiropractic you were on your own…but the medications and prescriptions were still relatively reasonable.

But then the description of chemo started to change: Was oral chemo a treatment? Or a medication? Did you pay $25 each time or $250 each time or $2,500 each time? And then was chemo by infusion reclassified as a medication too? The battles began. 

Your record keeping system had to get pretty sophisticated. One fat file would no longer be useful.

But the thing you could still count on was being able to talk about your cancer at work and never feel you were at risk or that there would be negative consequences. Or that people were looking at you in a “certain way”.

Now, as health care changes again, and we are taught to be conscious consumers, we are learning how the healthcare industry views a cancer patient and how –by default not by unkindness—employers also view cancer.

Organizations—businesses and corporations and nonprofits have to manage their healthcare dollars much more carefully. Healthcare is one of the biggest expenses of any business and its more than, “How many employees to you have to cover?”

Now an organization has to look at its Medical Loss Ratio: that is, How much does Company ABC have to spend based on the wellness and healthcare demands of its employee population. The rate the company will be charged by the health insurance company is based on how much usage a particular company has over time. Yep—“How healthy is this company—overall?”

Lots of math and statistics go into those calculations. They try to keep it fair and reasonable. So, for example, if there are ten pregnancies (babies are expensive in health insurance) a company’s usage might be high in 2013, but the next year there are no babies but one employee heart attack so several years get averaged together and projected to determine a rate reflecting how much demand (expense) this company’s employees are likely to incur (cost).

So here is how it starts to get creepy. And why you have to be a little bit careful.

No one is allowed, of course, to ask about your health in a job interview, and you have learned not to lead with “I had cancer last year,” but maybe you are still growing out your hair, or you have a resume gap to explain, cancer is going to come up. And this is where it is delicate for you and for the folks in HR. Because, remember the HR folks are also the ones who are negotiating with the insurance companies and they (of course) want to have as healthy an employee population as possible to keep costs as low as possible.

Yes, you are getting the “heart-healthy lunch” on Friday and the pedometer on Wellness Day because they care about you—and because they care about how much the company’s medical loss ratio will increase if a high proportion of employees has cancer—or a heart attack or a baby—this year.

The dynamics are changing. How health insurance costs are measured and attributed are changing. You need to know this as you make choices about how you communicate about your cancer at work.

Tuesday, April 14, 2015

The Survivor Card

Yesterday at a business event, a woman—who was a complete stranger to me--said, “I’m a two-time breast cancer survivor.” 

All day I thought about what she said, so out of the blue, and I wondered at her need to describe herself that way. I don’t know if she’s married, a mom, has cats, belongs to the Libertarian party, hates the sound of chalk on a blackboard, or loves raspberries, but I know about her breasts and her health.

What I also know is that the experience of cancer has so colored her life that it has become her primary identity. That seems as great a tragedy as the surgeries and treatments she has been through.

I know we should not be ashamed of cancer, and we do help others when we talk about it, but we also have to be mindful of not letting it define us. I am more than cancer and more than a caregiver. Yes?

Many years ago Mary Fetting, a wonderful therapist in Baltimore, helped me to make some big changes in my life. She saw how my thoughts were keeping me stuck, and she used to say to me, “Play another card.” She explained that we are each dealt a hand of cards—we get maybe seven to 10 cards each—both good stuff and bad stuff.
“But, she would say, “Some people just play the same card over and over.”  “Look at your hand,” she would say, “and play another card.”

I wanted to say that to the woman—whose name I never learned --but who believes that the most important thing about her is cancer, “Please, for the sake of your life, play another card.”

Sunday, April 12, 2015

Sex and Intimacy and Cancer

It’s been a long time coming but finally I came across an article about how your sex life might be impacted during and after cancer. The article is in CURE Magazine. (Cure is available in your oncologist's office or at any chemo center.)
Written by Lacey Meyer, the article discusses the challenges, feelings, fears and the shame about losing, reclaiming or trying to revive your sex life. Meyer addresses both the patient and the caregiver. The article talks about libido, erectile dysfunction, hormonal changes and the conversations required.
 Yes, she does include the requisite bit on cuddling. Sigh. (The “C” word). But brave Lacey Meyer-- she also talks about masturbation and vibrators and getting pleasure.

An open discussion about orgasms is coming soon!

Monday, April 6, 2015

You've Got to Be Carefully Taught..

Spain, Israel, Africa, Iraq. We look around the world and we see terrorism targeting civilians and it scares and angers us. When we read that some of the terrorists are educated people, some even working in healthcare, we shake our heads. The word incomprehensible comes up over and over. We don’t understand that kind of hate. 

In those moments we think that we would never be like those people. We are sure that we’d never disregard human life in such terrible ways. But the truth is that we have, and that in order to move from hate to peace we have to face that part of ourselves. Do we have the courage to look at the times when hate has been part of our national policy and politics?  

The view of the United States after two world wars, after Viet Nam, and atom bombs, our tolerance of holocausts, and repeated ecological disasters raises a fair question. Yes, it is painful to admit our past but pretending to be the innocent and injured party won’t help us change the world.  

What underscores all of it is hate. Not a nice word and certainly a behavior that we’d like to think we reject. But the scariest thing about hate is that it is easier than most of us imagine. What it requires is an unconscious dehumanizing of others.  Hence believing that our enemies are not like us. 

Seventy years ago psychologist Gordon Allport wrote, “The Nature of Prejudice”, still the most profound book on the subject. In his book, Allport makes clear that hate is a disorder of perception and that the hated has to be made “other”. But, he says, --and this is why hate is so destructive—“Hate like love, requires a relationship.” Hate is a hook that attaches the hater to the hated. 

Sixty-six years ago today another piece of writing about hate –perhaps a little more accessible-- was presented. On April 7, 1949 South Pacific opened on Broadway to shocked audiences. It was a musical that triggered tremendous controversy, but South Pacific went on to become one of the most popular musicals of all time.

Today we might find ourselves humming some of the familiar tunes from South Pacific as background music forgetting that Rogers and Hammerstein had transposed America’s racial hatred to the East so that American audiences could tolerate thinking about their racial issues.

South Pacific had a message that hit home in 1949 and which seems eerily relevant today. You’ll recall that the play is set in an island paradise where American troops are waiting for war, anticipating inevitable combat, danger and death.

At the center of South Pacific a song that sums up the heart of the play. The lyrics of  “You’ve Got To Be Taught” remind us that:

 You’ve got to be taught, before it’s too late;
 before you are 6 or 7 or 8,
 to hate all the people your relatives hate;
 you’ve got to be carefully taught.

The dilemma is that hate causes war but it is also what allows a soldier to kill their enemy. Hate is a perfect psychological fuel. And it is also, in South Pacific, what nearly dismantles the great love story.

So what do we do about hate? This is where the personal really is political. Maybe we need to look at the places in our lives where we hate, or have been taught to hate, and be willing to change that. 

What a lesson that could teach our kids, showing them that hate is a choice and that we always get to make another choice.  
Ezio Pinza and Mary Martin: the final scene of South Pacific.

Sunday, April 5, 2015

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 our layers of loss and gain.