Charm Bracelets in Cancer Land

I was in the beauty salon today for a pedicure and I got to enjoy one of my favorite indulgences: reading trashy and fashiony magazines for over an hour. It is like too much candy but also a visual feast.

But today I discovered a true gem in a copy of Bazaar Magazine. There was an article by J.K. Rowling—yes, the author of the Harry Potter series and of the new bestseller, “The Cuckoo’s Calling”

There between photo spreads of models in extravagant clothes and exaggerated makeup was a two-page story called, “This is a Story of Three Charm Bracelets”. The article had a simple outline: Rowling told the story of her first little girl charm bracelet given by an aunt, then of a much fancier and significant set of charms given her by her editor--representing the seven volumes of Harry Potter. And finally—the point of the article—Rowling describing her philanthropic passion—a foundation that helps children with disabilities who receive either no or very substandard care around the world. Rowling’s Lumos Foundation was offering an opportunity to win an extravagant charm bracelet to those who made a donation to her charity.

Bravo Rowling and bravo Bazaar Magazine—a wonderful editorial partnership and occasion of mutual marketing.

But it got me thinking about charm bracelets. Yes, I  too had one when I was younger. I remember a tiny airplane representing my first flight and a teeny typewriter symbolizing my ambition to be a writer, an artist’s pallet for a very temporary desire to be a visual artist, and there was also a cross for my then commitment to church and faith. There must have been numerals for birthdays and a small ruby as my birthstone.

That bracelet is long gone but I wondered today: If I were creating or compiling one now what symbols would I choose to represent the most significant events in my adult, nee, mature life? And what would a cancer caregiver charm bracelet look like?

Would we ever have charms for things like the first bad phone call from the doctor? A teeny notebook for the spiral binder that I still tote to every doctor’s appointment? How would I represent months of chemo? And neuropathy? And all the tears? Very, very small packets of tissues? Miniature pill bottles?

It’s the intangibles that are hard to represent. I know that one can find small broken hearts so I’d certainly have one of those. Maybe I’d include an anchor—the Christian symbol for the word Hope, and certainly a small telephone—all those calls to friends to talk. But how do I represent tray after tray of lasagna? And a sweltering summer with no air-conditioning because his sensitivity to cold air was so painful?

Perhaps you have some ideas of what would be on your Cancer Caregiver or Cancer Survivor charm bracelet. Please share them here. Remember these tiny things are more than trinkets—in fact they are called charms because we believe in the power of talisman, especially in Cancer Land.

Love Lost in Cancer Land

I found a note in one of my cancer files today. It’s from 2008 when our cancer dance began. Reading it stabbed me—I can recall that pain so vividly, but it also heartened me—in a sense—because I survived and we survived and yes, love survived.

But this old note I had written to myself also reminded me how dam hard cancer is for couples. How painful this worst side effect truly is, and that this is what no one at chemo talks about and what no doctor—or nurse—ever asks about.

There is so much loneliness in Cancer Land. And it is untouchable from the outside. Both patient and caregiver have their own versions, maybe mirror images. But sometimes I think there is much less room for the partner or caregiver to have this acknowledged. Reading this I ache for every couple facing cancer.

Here is the old note I found today:

“I am so lonely. It’s not a lonely that a movie or a meal or a pep talk can fix. The man I love cannot see me or take care of me. He is so sick. What I hoped for is not realized. The relationship is not one of equals. My dreams, my health, my work, my struggles are pushed aside. I am hurt, sad, angry, grieving.”

July 19 2008

What About Anxiety?

“Is pathological anxiety a medical illness, as Hippocrates and Aristotle and many modern psychopharmacologists would have it? Or is it a philosophical problem, as Plato and Spinoza and the cognitive-behavioral therapists would have it? Is it a psychological problem, a product of childhood trauma and sexual inhibition, as Freud and his acolytes once had it? Or is it a spiritual condition, as Soren Kierkegaard and his existentialist descendants claimed? Or, finally, is it—as W.H. Auden and David Riesman and Erich Fromm and Albert Camus and scores of modern commentators have declared—a cultural condition, a function of the times we live in and the structure of our society?”

Those words are from the new book, “My Age of Anxiety” by Scott Stossel, editor of The Atlantic magazine. Stossel’s highly reviewed book is both a memoir of his own crippling anxiety and a history of anxiety itself. This book is beautifully written and powerful in its blending of science, psychology, history and personal memoir.

Caregivers and cancer patients know anxiety. It begins on day one—diagnosis (or even before, when the first symptoms appear) and never ends. Doctor’s offices and infusion centers and emergency rooms and even support groups all have a surround of anxiety. Sometimes that hardest thing for a couple in CancerLand is managing their mutual anxiety. Honest sharing about fear is hard but so is the strategy of keeping one’s own fears and phobia’s to oneself.

Stossel’s book, detailing his own brutal experience with multiple phobias and overwhelming attempts to treat and manage his anxiety, is actually a help to us in CancerLand. No, not just because after reading his book we can say, “Dear God even cancer isn’t that bad”, but because –and this is the power of Stossel’s writing and truth-telling—in reading his book we absolutely know that our struggles and illnesses, of whatever kind, make us human and we are bound to each other by this kind of human suffering.

When You or Your Doctor Misses a Cancer Diagnosis

One of the many lasting side effects of a cancer diagnosis is that forever after both the patient and the caregiver will over analyze every twinge, cough, pain or lump assuming "It's back" or "Here's a new cancer." But sometimes the opposite is true: signals are missed, symptoms seem to be about aging, the flu, tiredness etc and a real cancer is missed until it's late in the game.

I'm posting the link below to a piece from the New York Times about how and why cancer's early signals can be missed, and what can happen when even the doctor makes an error. It's tricky, I think, because we still have an expectation of perfection from doctors--but how could that be? But the opposite is literally deadly.

I guess the question is about how to be self-aware of our bodies and when things change how long they last---like noting on a calendar when a certain pain is not changing or a digestive issue begins…so you know when you need to tell someone or ask a few more questions.

In Cancer Land we can be overly scrupulous and worried or we can be in denial. Like so many other parts of our life perhaps this too calls for getting more quiet, more mindful and more intuitive.

Here's the link:

http://well.blogs.nytimes.com/2014/01/02/missing-a-cancer-diagnosis/?smid=pl-share

Eat, Drink and Go Shopping

You’ll hear the advice in every caregiver class and every support group: You have to take care of yourself. You have to do nice things for yourself. You have to build treats and fun things into your caregiving life.

It’s great advice and perfectly true. You do need good meals, favorite treats and a wonderful dinner out once a month or once a week. You need to buy lovely toiletries so you can take that highly recommended bubble bath. And yes, to manage your stress you do need to get a massage, a facial, a pedicure or a makeover.

“Shop Therapy” is recommended by caregiver experts. They say it’s helpful to take yourself to a mall—and that high end malls are especially beautiful, comforting places to shop or people watch. And yes, especially after a hard stretch—managing a surgery or a long regimen of treatments, you should buy the dress, scarf or shoes. Shopping is especially helpful because it is forward facing. You think about your future when you are buying a new dress. You are reminding yourself that you will have a life again and that you will get back to what matters to you.

It is also OK to have a glass of wine at night and a wonderful piece of chocolate and yes, to order in pizza with all of the fixings, and if you love to cook, then go ahead and make that “Darn Good Chocolate Cake.”

But.

Yes, but.

But don’t eat all of that cake, and don’t drink the wine every night. Don’t shop everyday, especially online. And don’t slip into the danger zone with any addictive substances.

How will you know? It’s not easy. You are stressed. You may have prescriptions of your own for sleep or anxiety or depression. And you have access to his or her meds too. So number one: Are you taking your meds as prescribed? And are you taking --or tempted to take --medication prescribed to another person?

If “Shop Therapy” is your primary release do you feel better afterward? Or are there twinges of sadness or shame or regret? Can you pay for what you are buying? Are you shopping to get even with him/her for being sick?

Alcohol may be the trickiest area. Everyone, well almost everyone, will tell you that you deserve that glass of wine. But you have to ask yourself: how big is that glass? Are you refilling it before it’s empty? Do you watch the clock to see if it’s “time” for your drink? And again, do you have remorse, regret, or shame about your drinking?

The biggest signal of all that one of your “soothers” may be creating trouble is if you keep it a secret. So do you hide your shopping, spending, eating, drinking or drug use? That is your best self’s way of telling you that something is “off” in your caregiver self-care.

Getting honest with a good friend can help and so will talking with your caregiver support group. A good group with an experienced facilitator won’t be surprised or judgmental. And they can help you move back to into balance or to get help that is just for you.

Happy Introvert Day!

Ahhh,  January 2. The day that introverts get to breathe a sigh of relief.  We can come out of hiding; it’s safe to answer the phone, and to stop pretending we feel the flu coming on. Hip Hip Hooray! The holidays are over.

Yes, from mid-December through New Year’s Day, those of us with an introverted nature live in a state of perpetual dread. The weeks of office parties, neighborhood potlucks and open houses drain all our energy. But today we can relax; we made it through.

I speak from experience. I am an introvert. It surprises most people because I’m outgoing and friendly and, in fact, very far from shy, but I prefer one person and one conversation at a time.

I fought this for years, always trying to be someone else. I made myself go to parties; I tried to fix what I thought was “wrong” with me. It didn’t help that other people would press, “But you’re so good with people” as if being introverted meant living on the dark side. But I finally got it.

This is also one of the blessings of being older. Along with the wrinkles comes a, “What you see is what you get” self-acceptance, or perhaps for introverts it’s, “Who you don’t see is what you get”. It is a great relief to stop trying to be who you’re not.

But it’s no wonder that we introverts are sometimes defensive. Seventy-five percent of the population is extraverted; we’re outnumbered three-to-one, and the American culture tends to reward extraversion, while being disdainful and suspicious of reflection and solitude.

I’ve learned to spot us though. We’re the folks walking toward a festive house saying, “How long do we have to stay?” Or we’re the ones in the center of the room assessing other’s interactions, and slowly backing toward the door. Introverts crave meaning, so party chitchat feels like sandpaper to our psyche.

Here’s what introverts are not: We’re not afraid and we’re not shy. Introversion has little to do with fear or reticence. We’re just focused, and we prefer one-on-one because we like to listen and we want to follow an idea all the way through to another interesting idea. Consequently small talk annoys us. So does pretending to be happy or excited or anything that we’re not.

Many great leaders are introverts and I think that many of our better presidents have been introverts: Lincoln, Carter and the John Adams—both father and son.  No, maybe I’m not being totally fair, but life isn’t fair to introverts. Introverted kids are pressured to “speak up” and “make friends” or told they’re not leaders. We’re hounded to “be more outgoing” and tortured with invitations that begin, “Why don’t we all…” …No thanks, we don’t want to do anything that involves “we” and “all”. We prefer to visit you, just you, and not a dozen other people.

The philosopher Pascal wrote, “The sole cause of man’s unhappiness is that he does not know how to stay quietly in his room.”  Introverts do. So let’s make January 2^nd, Happy Introvert Day. We’ll be quiet and happy. As a bonus, January’s weather is on our side.

You say it might snow? Oh darn, I guess I’ll have to stay home.