Fight Fear with Self-care

“Self-care never leads us away from our highest good; it leads us toward it.” 

--Melody Beatty

This is a lesson I have to learn over and over. So I’m sharing Melody Beatty’s quote here for you and maybe to remind me too. 

When cancer’s fear hits my first reaction is Control and then, Get Busy. I understand the dynamic. Fear cannot hit a moving target. So when we get scared we get busy, and when we get busy we get more tired and more stressed. It makes sense and is understandable. But...

in CancerLand there is so much to be afraid of: words we can’t pronounce, side effects that come and go and which can sometimes be terrifying (He stops breathing when he opens the refrigerator door—not even the freezer—just the fridge!). And the lingo of the medical establishment and copays that go up and up and up. Then of course the medical reality: people die of cancer. We know that so even though we experience so many cancers as chronic illnesses now, some are still fast to the finish line.

And for caregivers there is also the secret fear with the more chronic cancers: “Will this be my/our life forever?” “Will quarterly blood tests rule my emotions all year?”

In this Land you will be tempted to do more, move faster, read more and that means less self-care (for both patient and caregiver)—and note: medical appointments are not self-care—they are just business –as-usual in CancerLand.

I know, fighting fear with self-care seems counter-intuitive but believe me, it works.

What’s not easy is learning what true self-care is for you. Start with the standard prescription: manicure, massage, lunch with friends, a new pretty blouse. But then dig deeper. Maybe for you self-care means getting away alone for an overnight. OR maybe it means a movie marathon with someone else who loves Downton Abbey or going for a long run or doing a 5K.

Or –and this is radical—try some volunteering. (But absolutely not cancer related activities) Instead volunteer to hang an art show at a school gallery or tutor young kids or plant bulbs in a city park. Find people who don’t know you as a cancer patient or cancer caregiver (and don’t tell them). Take time to experience yourself apart from cancer.

You will be tempted—very tempted—to say, “I can’t do that, I’m needed, things are not great right now…” But it is life—and living life –that is the best self-care and the best antidote to fear.

Maybe Fear Just Is....

I watched the Golden Globes last night and I was struck by the number of women who mentioned their self-doubt or "not fitting in" or having fears about their work/career/talents. And today I read the New Yorker piece by John McPhee--who is an extraordinary writer and The King of nonfiction and a literary star by anyone's account and he writes about the "terror" he faces when he begins a new piece.

It is making me re-think fear. Maybe we should not (I should not) spend so much time (and energy and money) trying to get rid of fear. Maybe just accept it? Maybe just say "Yep--more fear" and keep going?

Maybe treat fear like a toddler having a tantrum. (It's kind of like that really...) And say, "Okey-doke sweetie, when you're done with that tantrum I'll be right over here.

Fashion Tips for Caregivers at Chemo

The question arises: What should a caregiver wear to chemo? There is no official dress code but think again. My favorite look: Khakis with a black linen shirt worn over a black tank top (layers are good) black ballet flats (they signal a causal insouciance) and my new necklace—black pearls inserted among silver waves. This is the gift from John: subtle, stylish and very me.

Hospitals, doctor’s offices and even at chemo-Looking good makes a difference. Leave the sweat pants and polyester at home. Go for neutrals, polish and natural fibers. (There are enough chemicals in CancerLand for everyone.)

Diana Vreeland, the legendary editor of Vogue wrote, “The one presenting the most style has the most power.”  In this powerless situation, style is a consolation.

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 He Dies

This morning I was out walking very early. At that hour my mind drifts all over the place and I was imagining John’s funeral. It was prompted, I think, by the music on my IPod, a thought about the music choices I’d make and what the actual event might be like.

Then the fear hit me; I knew how sad I’d be and how scared I’d be and how hard it would be to walk out of the church when John has died. But then my drifting mind reassured me. “Oh,” I thought, “But John will hold my arm, he’ll walk out of the church with me; I’ll lean on him”. And then the terrible reality hit me: When I am at John’s funeral he won’t be able to help me.

On that day I most fear—the day I’ll need him most—he won’t and can’t be next to me.

Spiral Worries

Ugh..the worries spiral. Work, relationships, work, relationships. When I’m sad I don’t want to work, when I don’t feel like I’m working well, I worry about losing my job, when I think I could lose my job I worry about what will happen to the relationship if I lost my job. The spiral goes faster until I cry or get so mad at him and me, mostly me.

I know that prayer and faith is the answer but I fight to trust God.

That feels like my task today: slow down and trust God. Even though it seems like the most counter-productive thing to do.

I don’t know where else to put this but in God’s hands. And when it gets—I get—like this it’s the most impossible thing to do.

In the Valley of the Shadow

I’m reading theologian James Kugel’s new book, “In the Valley of the Shadow” in which he examines the state of mind and sense of human smallness that comes when one is diagnosed with a serious illness. Fascinating that Kugel’s response to his own terminal diagnosis is his choice to follow and document his own thoughts and changed sensibility. A scholar, thinker and theologian even unto death.

There are many wonderful things in this book. Part of what stands out is how Kugel’s awareness of himself and others shifts as his illness proceeds. Here is an example:

“Most people, when they see someone ravaged by chemotherapy, just tend to keep their distance, and I suppose that my colleagues, experts in ancient and medieval religion, were no exception. Fear also plays a role. “That could happen to me” is rarely spoken but often thought. If people do talk to you about your condition, they usually get around to asking you what your first symptoms were---this could be useful information, after all! Some are also eager to discover something in your family history or some aberrant feature of your diet or daily regimen that can be blamed for your catastrophe while leaving them in the clear…All this, I’m afraid is merely human.”

What Really Matters?

There are many strategies for discernment. Many spiritual techniques and practices taught by experts in psychology, spirituality, even management. But there is nothing like seeing an irregular mole that wasn’t there yesterday to snap my mind into, “What really matters?” I go into mental triage: What now? What later? And while it is a bit paranoid and a kind of self torture to always be killing him off like this —it is also a gut compass that points me to the truest truth about what matters to me and who I am—good and bad—if his cancer does return.

Always the Counting

When I was a little girl I would sit with my mother while she visited with neighborhood women. I’d play while they talked. I remember a certain bafflement when they talked about some young person who just got married or when a first baby arrived. They counted backwards on their fingers. I didn’t understand till years later that they were counting backwards from 9—nine months—to determine if that baby had been conceived before the wedding.

Similarly I have this tick of counting when I read of someone dying from correctol cancer. How many months? How long after diagnosis did they die? And then I compare John’s dates and make my corresponding assumptions and deals with God.

I did it today reading Meghan O’Rourke’s memoir, “The Long Good-Bye” about her mother’s death. A beautiful book, I read it noting the literary allusions and the dates—counting, always counting. O’Rourke’s mother died two-and a-half years after diagnosis. I think back; how many months is it now for John? OK—we’re past that marker so is that good—he’s out of the woods? Or is that bad—he’s closer to bad news?

I did this also when Tony Snow, White House press spokesman, died in 2008. His diagnosis was the same as John’s and he died a month short of three years. Knowing the similarity of their diagnosis and treatment he was a scary marker for me. And so I’d count.

I can feel my mother in me when I tick off the months and years, 2011, 2010, 2009 and I know that the clock is inside of me, ticking, ticking, ticking.

Super Bowl Sunday

Today is Super Bowl Sunday. The table is black and gold. My clothes are black and gold. It’s bringing back so many good memories of growing up in Pittsburgh when the Steelers were always winning. It’s a funny thing about growing up in that era—all the sports teams were winners: Steelers, Pirates even the Penguins. I just thought that’s how it is when you live in a city—your teams win. Then I moved to other cities and realized how very spoiled I was by Pittsburgh.

Guests for dinner—pierogies, Chinese take-out, wings, Mexican, all football fan food. We’ll watch the game and the commercials and I will hope and hope for a Steeler win.

But in the background—a slight hum, a slight wafting of low grade fear. Tomorrow is oncologist again. Blood work and “Can you open your pants?” Our little joke that she wants to peek below his belt.

Flip a coin. Steelers kick off? Chemo again? Love—and football—in the time of cancer.

Looking for Signs

I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid, but part of me wants instructions that spell out clearly what I should do with my life.

I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.

Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.

But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We've had Hanukkah, now Solstice and soon Christmas, all great stories about finding light.

The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.

In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”

Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?

So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.

This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.

Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.

Our Friend Fear

I heard from a reader today (Thank you V.) who wrote about the fear. Yes, we can call it “the” fear. Fear for caregivers is so fluid and shape-shifting and paralyzing. Hardly anyone in Cancer Land talks about this. Of course we read and hear about the fears of the patient—fear of diagnosis, surgery, the fear before tests and maybe after. Awful yes –but nurses and case managers and doctors forget that other person often sitting in the room.

The fear that we caregivers live with is also disabling. What makes it even harder is the constant feeling that we can’t complain about it or express our suffering. In most cases we are not the one with cancer and that presumes that we are the one that can still go to work (not really) and still sleep (not really) and are not in physical pain (not really).

If only it was a fear that stays still like a fear of flying or a fear of snakes. But caregiver fear is a hydra with many heads and a demon that shifts its shape. It takes bad news ten different ways and then takes good news—“He’ll live” (but how?) or “They said yes to more chemo” (to what end result?) and that becomes six new ways to be scared.

Fear is our friend with a major personality disorder. Our dear Sybil—with us all the time and ever so vigilant as our constant companion.

Caught Off Guard

Ah, and I thought I was so prepared. That’s the trouble with mental rehearsal of troubles. They catch on to your head and then and sneak up from another direction.

Yesterday was oncology check up day. Four month interval with blood tests, looking for the tumor marker and the “Can you open your pants for me?” the belly exam that I so love to tease John about. It does seem that the most attractive PA’s and nurses ask, “Can I see your scars?” and he obliges like they were his etchings.

It was all good, Blood work OK and tummy-tapping just fine. But me: not!

I was a crazy woman all day. Grumbling about minor infractions and feared big events. My scared-girl head took me on a day long roller-coaster of “he doesn’t love me” and “they (any “they” will do) will upset the apple cart of our good life.” Just a day of fearful scenarios that ended—I’m ashamed to say with me saying nasty things and finally sobbing.

Oh duh, cancer got me again.

I guess all’s well that ends well and our day ended with left over pasta, a Yankee win and an early bedtime.

Progress not perfection.

Flu and Fear

Last night we were watching “Finding Forrester” the great movie with Sean Connery as a J. D. Salinger-type writer. And John began to have abdominal pain. Note: See right there, “abdominal pain”…not a tummy ache but “abdominal pain.”

So I begin to ask questions, examine scars, assess levels of pain. No I’m not a doctor or a nurse I just play one in my head. (And yes I did have a Dr, Kildare shirt when I was 13 and crazy about Dr. Kildare and Ben Casey).

Good news: I stayed calm
Bad news: I assumed the worst.
Good news: I packed a small bag; got out the hospital notebook and made sure I had phone numbers and a cell phone.
Bad news: I what?

It was a tummy ache. He slept on the couch. I put myself to bed and made me stay there.

This is what cancer does to you—or to me. I was ready to go, blue notebook in hand, expecting the worst.
It was just the flu.

Fighting to Remember

For two days we fought like cats and dogs—or maybe like Mars and Venus. All the things that the experts and relationship books say not to do we did: Brought up the past, said mean things, accused, said “always” and “never”, got loud, got silent, went to bed mad, didn’t go to bed at all. And then we cried. We sat on the bed sobbing. Were we really going to end this? What was this fury and terrible desperate pain between us? And inside of me I was asking, “Why now?” The past several months had been so happy; we’d had such a wonderful summer; we were making plans. We were both shaking our heads and reeling from our battle. And then…

And then yesterday I came home from work to a phone message from the oncologist. A reminder call that blood tests and follow up cancer screening is this Friday. Neither of us had remembered. Neither of us had put it on the calendar. But here it was and we both knew. Deep down in the body or mind we both knew the scary time was coming again and the risk to us was back. Now even more frightening because we had gotten comfortable again.

Cancer had gone on a long trip.

And we just got a postcard saying, “Be home soon; wish I was there.”

Roll Away the Stone

Big stuff today. Talking to my therapist about this relationship and about John’s cancer. Trying to sort out what is my over-the-top fear and what is diagnostic and statistically probable in colon cancer. We were talking about that and my sense of urgency to make some peace with all of this when I felt an idea or a realization move from the center of my body to my mouth and become words.

This is what I said to her: “I am afraid that if the cancer comes back, and if he dies, it is because I allowed this relationship to be, and I’m afraid that if the cancer comes back and he dies that it is my punishment; I will lose him and I will be humiliated.”

Even as I said those words I was amazed that it was coming out of me and I knew that was the true fear. Fear not just of cancer --that will hurt him or kill him—awful all by itself—but that in some way it is a punishment of me—and that the punishment takes the form of abandonment and humiliation.

Yes, of course these are my “issues” fear of abandonment and pervasive shame. But Holy Cow---the way the fear was coming to me was absolutely Biblical.

I could see her reaction as I spoke and we both got it that this is not just a psychological issue but a spiritual and even theological issue.

But here is what is both troubling and baffling me. I did not grow up in a fire and brimstone family; no one taught me to fear a punishing God; all of my spiritual practice and professed belief is in a loving God. But these fears belong to another belief system that I have not had any awareness was operating inside me.

Have I channeled my father’s early Catholic God? Is this cultural? Past life echoes? The collective unconscious? Really, it makes me wonder and it makes me pray.

This deeply held and silently operating belief is in my way. I knew it and my therapist knew it. I said to her, “This is in the way; this is why I cannot decide and why I cannot think clearly.” She had the exact image as I spoke this fear: There is a large boulder in my path.

I knew at once that even the image was Biblical. There is a stone blocking awareness, clarity and peace. The stone is blocking my belief in a loving God and in God’s will.

Who will roll away the stone?

Throw Them Over the Edge

Managing my own thinking—and not scaring myself to pieces –is one of my ongoing challenges as a caregiver and partner. Here is my new strategy to deal with scary thoughts.

Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.

Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!

Scared to My Roots

I had a hair appointment today. I love the woman who does my hair. She has the best color sense and a gift for seeing the whole person: face shape, hair type, and personality. She was the person who told me, “You have 43 cowlicks; your style will always be messy, sexy layers with lots of movement.” After learning that about my hair I now just ask for “messy sexy layers” and my hair looks and feels like me. And it moves a lot. Just like me.

She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.

Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.

But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”

I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Cancer Worry

There are an unlimited number of triggers for this fear. It’s August and that means John’s next blood work is 30 days away; it’s summer and I feel the false optimism of the season; we talk of planning a wedding and my mind immediately calculates the rate of colon cancer when it appears a second time –four to six months. We’d never make it to a wedding. I look at calendars and wonder. I look at plans at work and underneath all of it there is a low whisper, “Could you handle that if he has surgery and chemo again?” I think of changing jobs and I think, “Manage a new job and daily caregiving?”

It’s always there. Even though on the surface and perhaps in reality there is no cancer now, today, it’s there underneath everything I do and think and plan. What if…When…
People who have had cancer know this thinking, and caregivers live with it too.