The altered body

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By Caitlin Kelly

This week, a year ago, a female surgeon — wearing monkey socks she proudly showed me beforehand, sharing a laugh I needed — removed a small growth from my left breast.

Today it’s a thumb-length pale pink scar I see every day. Since the end of 20 days’ radiation treatment in November 2018, my skin there is now brown and freckled, unlikely to change. The skin is also still orange peel-ish in texture, odd and unpleasant to the touch or appearance.

The minuscule black dots on my back and stomach, used to guide the radiation machine, are still there as well.

And there’s nothing to be done but accept it.

Serious illness will knock any vanity out of you, no matter how we hope to remain forever pretty or thin or strong.

If we survive it, we’re forever altered, our bodies a map of our journey.

After a decade or two, our bodies bear witness: scars, wrinkles, a few persistent injuries that twinge us on a rainy day.

My two favorite scars are maybe half an inch in length, almost matching, one on the inside of either wrist — both the result of great adventures I thoroughly enjoyed at the time.

One, falling off a moped in northern Thailand, as I and my first husband rode to the Burmese border. The other, sustained by scraping against a metal cable while crewing aboard a Long Island yacht in a fall race.

I have three little scars on the top of each knee, like the top of a coconut, from meniscus repairs, also the result of a highly active life.

Friends who have faced multiple surgeries know this all too well.

Our bodies demand repair.

If we’re fortunate, we’re treated with skill and kindness and heal.

As long as my body is able to function freely — and thank heaven, for now it still is — I don’t care as much how it looks as what it can do.

Grateful to be here, scars and all.

 

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The only body we have…

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By Caitlin Kelly

 

This is a heartbreaking essay, by a woman writer, about 50 years of hating her own body, from Medium:

 

Sandwiched between two ruthless brothers in a household where verbal cruelty was a competition sport, I was easy game. My parents — the should’ve-been referees — were, instead, the audience. With the rebuttal they should’ve been providing to my brothers’ barrage of relentless brutal nowhere to be found, I had nowhere to go, nowhere to hide. In the void of any contradiction, every harsh word became truth.

Few events will make you as deeply, weepingly grateful for your body’s health and strength than than the loss of some of it — or the potential loss of all of it.

I say this with the hindsight of someone who, before the age of 40, never saw a damn doctor for anything more intense (ouch!) than an annual mammogram and Pap smear. Since then I’ve had both knees “scoped” — i.e. arthroscopy — which removed torn cartilage (the price of decades of squash games, now verboten), a right shoulder repaired (minor) and my left hip fully replaced.

It’s a funny moment when — as I was being wheeled into our local hospital’s OR for my breast lumpectomy in July — the female, Hispanic (so cool!) head of anesthesiology recognized me and vice versa. That’s comforting, but also a bit too much surgery.

I really hit my limits in March 2017 when I arrived at the hospital with chest pain so intense I could barely tolerate the seatbelt worn for only 20 minutes to get to the ER.  Turned out I had a 104 degree temperature and pneumonia I had been ignoring. That meant three days in the hospital on an IV and coughing so hard I thought I might pass out.

I sweated so much I was thrilled to be able to shower there.

I apologized out loud to my exhausted body, the one I’d been abusing and taking so for granted.

Never again!

As someone who came of age during second-wave feminism and in Canada, I never spent a lot of time fussing about my body and how it looked. I like to be stylish and attractive and have always loved fashion. But freaking out about the shape or size of my body?

Nope.

 

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I care most, still, about being healthy, strong and flexible.

I love being able to hit a softball to the outfield and savored my four years being a nationally ranked saber fencer — in my late 30s.  I hope to get back to downhill skiing, horseback riding, hiking.

Social media has made the endless and relentless scrutiny of our bodies even worse than it’s always been — policing our size and shape is such a useful way to distract us from essential issues like the size of our paycheck.

Shaming women for being fat(ter) than someone would prefer us to be (MDs only, thanks) is just another way to undermine us in a culture that demands insane “productivity” and only makes beautiful clothes for women smaller than a size 10 — when the average American woman is now a size 14.

Some of the most “beautiful” women I’ve met — those externally chic and spotless — have been ruthless and unkind.

So my definition of beauty, and human value attached to a body, isn’t only rooted in what we see on the outside.

 

How do you feel about your body?

 

 

View this collection on Medium.com

View this collection on Medium.com

View this collection on Medium.com

View this collection on Medium.com

Life in cancerland: 18 tips

 

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By Caitlin Kelly

Some reflections on my having entered — as of June 2018 — a new and sometimes overwhelming world; if useful, please share!

 

You are not alone

You may certainly feel it as you reel with shock and try to make sense of what will happen to you next. My early June diagnosis of DCIS, (a sort of pre-cancer, even though the word carcinoma does mean cancer!) is one shared annually by 44,000 American women.

 

You will likely be in shock and feel utterly disoriented

Even if your prognosis, as mine is, is excellent, you’re stunned.

One minute, you assumed you were healthy, the next…you’ve entered cancerland, filled with sights and sounds and sensations both foreign and unwanted, that you may never have experienced.

What the hell is an aromatase inhibitor?

What are my eight tattoos for exactly?

How tired and ill will treatment make me feel?

 

You face a learning curve

Until you’ve had a biopsy, you don’t know what it feels like, during and afterward. Same for chemo and radiation and other things likely to happen. It’s all new and unfamiliar and a lot to process, physically, emotionally, intellectually — and, in the United States — financially.

 

Ask as many questions as many times, of as many medical staff — including technicians — as you need, and take notes

It’s complicated stuff!

Don’t ever feel stupid or intimidated or rushed or that your concerns are unimportant. Health care includes feeling cared for, not just surgery and medications.

 

People who have never had experience with cancer may behave in hurtful ways

Even with the most loving intentions, people may say things (oh, it’s not that bad!) or do things (send you books about cancer, unasked for) that can leave you even more anxious, scared or disoriented.

They may also tell you to “fight” and “battle” — when (if they don’t know the details) this might not even be necessary, or might not be possible. Ignore them!

This is not what you want!

 

Get off the Internet and listen to your MDs

The first advice my gynecologist gave me — who told me the news by phone — was to not start reading about this on the Internet.

I didn’t and have not and will not.

But I make my living seeking and processing vast amounts of complex information as a journalist — how could I behave this way?

Because I’m human and had to process enough new information as it is!

I also have avoided any detailed conversations about this unless with fellow patients, and not even a lot of that.

 

Some people will flee

This can be painful. It’s them, not you. As one friend (whose wife died of lung cancer) said: “You don’t know what their vulnerabilities are.”

 

Some people will step up unexpectedly

This is a great gift.

 

You will need to let some new people in, even when that feels weird to you

I find this difficult, as someone who’s always been quite private. But without allowing others to know the details of your situation and to comfort you, it’s too hard.

 

Some people will over-share and overwhelm you with their medical story

Shut them down.

This is not the time for you to hear, process and empathize with others’ details and fears. This is the time for you to focus on your needs. That may feel unkind, even brutal. Just do it.

 

If at all possible, find a medical team and hospital you like and trust

You will be spending a lot of time in their offices, possibly daily, weekly, monthly and for many years to come. If you like, trust and respect them, you will feel safe — literally — in their hands.

If you have doubts, find a team you feel good about; this is more difficult if you live in a rural area or have poor health insurance, I know.

 

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You’ll be seeing, and see and be touched by, a lot of people you have never met

That’s another stressor right there.

So far, I’ve seen more than a dozen different MDs, multiple technicians and been to two different hospitals. It’s a lot of new people, and different personalities, to cope with at once — in addition to your diagnosis and treatment.

As one friend told me, you’re spending a lot of emotional capital.

 

Ignore (most) others’ advice!

People will rush to give you all sorts of advice, leads, insights and tips. Everyone’s body is different. Everyone’s tolerance for pain is different.

Just because they or someone they know had a better/worse/horrific/painful outcome, this may not be your experience.

Don’t let their possibly frightening, unhelpful or inaccurate data bombard you while in a weakened physical or emotional state.

 

Educate a few people about your cancer — and let them do the talking for you

It’s time to conserve all your resources, especially time and energy. People who have not faced cancer, and your specific kind of it (what stage, where are you in treatment, invasive, recurring, metastatic, ER+, etc.) have no clue.

Having to keep explaining things to them can be too tiring and upsetting.

 

Do whatever comforts you most deeply

That might mean withdrawing from most social events to save your energy. Hugging your kids or pets. Knitting or playing video games or binge-watching TV, prayer and meditation.

 

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Rest as much as possible

Your mind and body are under assault. Naps are your best friend.

 

You don’t have  to be “brave”

People will tell you how brave you are.

You’re just doing what you have to to stay alive, even if (as I have) you might be fearful and crying a lot to a few people. Even a good diagnosis is enough to shake you hard.

 

Ask for help — and don’t think twice about it!

You may need help getting to and from medical appointments — tests, bloodwork, chemo, whatever. Even if you’re not feeling tired or weak, it is deeply comforting to have a friend or loved one waiting for you when you emerge from whatever it is you faced that day.

Having someone to drive you there and back is a real blessing. Ask for it, and accept it with relief and gratitude. Same for dog-walking, babysitting, food shopping, cooking, laundry.

Love is action.

 

The gift of mobility

By Caitlin Kelly

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Cruitch Island Golf Course, Donegal, Ireland — June 2015

Maybe you just walked to work or enjoyed a bike ride or went dancing last night.

Maybe you’re training for a marathon or triathlon — or happy to race with your dog(s) along a trail.

Today’s the day I celebrate my body’s rebirth to full mobility – on Feb. 6, 2012, I was wheeled into an operating room to have my left hip replaced.

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I was young for the surgery, as most people have it in their 60s or beyond; my 86 year old father only had his hip done in May of 2015.

I was very fearful, (I’d already had 3 prior orthopedic surgeries, [both knees, right shoulder] within the decade, all of which had gone well), and had put the operation off for more than two years. I was sick to death of surgeries and rehab and doctors and the whole thing.

And, as someone who’s wholly self-employed with a fluctuating income, I also had to fund a month off and the cost of co-pays for physical therapy rehab.

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Another beloved activity — this is Daybreaker — a 7:00 to 9:00 a.m. regular dance party in Manhattan

Those two years of avoidance, though, were crazy.

The arthritis in my left hip had required a course of steroids — whose side effects, (called avascular necrosis), instead destroyed my hip bone.

The resulting pain was 24/7 and exhausting. It made every step I took painful; even crossing a room was tiring.

Buying groceries in the enormous stores here in the suburbs of New York was a misery. Museum visits became marathons and I carried painkillers with me everywhere.

By the fall of 2010, in desperation, I went on crutches for three months just for a brief respite from pain. I bought a pair off the Internet, the short kind typically associated with long-term disability (think of FDR photos). Heaven!

With renewed energy and the ability to move more safely, painlessly and quickly, I went to the movies and theater, (scooching sideways across those narrow aisles), and even flew to Las Vegas to address a conference there.

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The Paris Unity March, Jan. 11, 2015. Yet another event my new hip allowed me to experience.

By December of 2011, I was just too worn out from pain and booked the operation.

Three days before it, I was a featured speaker at — of all things — a conference of liquor store retailers in New Orleans, wandering that city’s streets with a limp so pronounced I walked like a drunken sailor. I’d been invited as a result of my book “Malled: My Unintentional Career in Retail” to share my research into low-wage labor.

Sheer luck brought me that gig — and earned me $6,500, enough to take time off to just rest, rehab and recover.

A highly active person — I walk, cycle, dance, play softball, ice skate, ski and do a variety of other sports — I feared that a poor surgical result would mean the end to my athletic life. Or that my doctor would utter the dreaded word “moderate”, as a verb.

Not in my vocabulary!

I learned how to canoe at camp -- useful when we went to Nicaragua
On assignment in Nicaragua for WaterAid, March 2014

Here’s my cover story from Arthritis Today about that life pre-surgery. I like the photos they took, but you can how heavy I got because it hurt so much to exercise.

Today I take jazz dance  class twice a week, one of them so vigorous I leave sweat puddles on the floor, and enjoy full range of motion. (OK, I don’t do the splits anymore.)

I also live in an apartment building filled with people in their 70s, 80s and 90s, many of whom can now only ambulate safely using a cane or walker.

It’s sobering and instructive to see what aging, (and/or a poorly done surgery), can do to our blessed ability to run, dance, jump and simply enjoy the grace and power of our bodies.

Never take it for granted!

Ten warning signs you’re an adult

My Mortgage Docs to be Reviewed by an Expert
My Mortgage Docs to be Reviewed by an Expert (Photo credit: Casey Serin)

We all know the standard metrics: graduate college, grad school, marry, have kids, acquire property and a vehicle.

I never had kids, so that typical dividing line into Maturity escaped me.

But for many of us, different moments mark a definite end to innocence.

Here are ten that resonate for me:

Taxes!

I grew up in a family of freelancers whose approach to paying income tax — which is never deducted at source, for those of you who’ve never done it — was, hmmm, variable. One day my Dad said, “I have two pieces of advice for you about taxes.”

“Running and hiding?”

Suffice to say I now have a very good accountant and genuflect to him deeply.

A mortgage

In New York, getting a mortgage is like some bizarro obstacle course littered with lawyers with out-stretched hands. Check, check, check, check!

Knowing — and caring about — your FICO score

For those of you outside the U.S., this is your credit score whose quality determines whether life is pleasant (low interest rates on mortgages, car loans, credit cards) or a hell of slammed doors refusing you access to any sort of credit. Surprisingly few consumers realize what sort of leverage you have with a good score — a lot!

Giving informed consent for my mother’s brain surgery

That was very weird, given how deeply private she always was. I looked, literally, into her head, staring at the four-inch tumor on X-ray that soon, successfully, came out.

Putting my mother into a nursing home

Pretty much the hell you’d expect: having to sell 95 percent of her things and make consequential decisions quickly. Being an only child makes it both easier and harder.

Getting a colonoscopy

For those of you under 50, something to look forward to! (And those putting it off out of fear, it’s no big deal. You have one wearying day beforehand to cleanse you colon, go to sleep during the procedure. Done.)

Knowing your neighbors

When you’re young, single and often behaving badly, you may not want to know your neighbors. Who was that guy/girl skulking out of your apartment? What were those weird noises at 3 a.m.? Once you’re a bit older, maybe traveling for work, maybe with a place you own and/or value more than a dive shared with six roomies, having kind and watchful neighbors is a wonderful thing.

Regular mammograms/Pap smears/prostate exams

I’m always a little stunned when I hear of someone, (who has health insurance, which in the U.S. means these are no-brainers), who skips these essential tests. No one wants to hear bad news. My mother has survived breast cancer, so mammo day is always a little shaky for me. But seriously? Just do it!

Joining a faith community

No disrespect to atheists and agnostics. But for many of us, finding a congenial place to nurture your spiritual growth is a major step. It’s easy to focus solely on family/work/friends/fun — until the shit hits the fan.

Making a will/living will/power of attorney/health care proxy

So cheery! But if you have been fortunate enough to have accumulated anything of value, it’s worth deciding who to leave it to. And facing any sort of major surgery — even childbirth, my mom-pals tell me — means facing the scariest of fears about mortality or severe injury.

How about you?

What milestones have marked your path to adulthood?

One (slow, halting) step at a time

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Image via Wikipedia

There’s a new sound in my life — the click, click of my sexy French crutches — as I learn to walk normally again after two years of 24/7 pain and a gait so altered I started to look like Quasimodo, that ruined my shoes and swelled my right foot and increased the diameter of my right calf by an inch from overcompensation.

It’s been almost a month since my hip replacement, and I’m learning to trust my body again. It feels really good to stretch, to break a sweat and (yay!) to reach my toes.

“Patient”  — the adjective, not the noun — is not my most obvious quality. This recovery, from full hip replacement, includes dire warnings about doing too much too soon and how not to push it. More is not better. But you don’t know you’ve done too much until…

Daily, I circumambulate our apartment building and garage in warm, dry weather and our apartment building hallway, where 12.5 laps equals a mile, when it’s wet or really cold. My goal is a daily mile, only after which do I get to shed my $38/pair white surgical stockings I wear 23 hours a day to prevent blood clots.

Physical therapy, three times a week, (and $60 week in copays), is slow, incremental, dull, repetitive — and utterly essential to a full recovery.

When I met my surgeon, I handed him a list of a few of my many sports, and asked how soon I would be back at them. My softball team, having missed me for two years, keeps asking when I’ll return. I’m hoping within six months; friends my age (and much older) who’ve had this procedure have since climbed the Great Wall, hiked Guatemala and climbed four flights of stairs without trouble.

I’ve had to recuse myself from real life for a while, missing a friend’s book party, unable to get to my regular hairstylist in Manhattan, a 45-minute drive or train/cab away, closed off from movies, concerts and anything that would require me to sit more than than 60 minutes at a time I’m allowed.

Maybe because I did a silent 8-day retreat last summer, I’ve really appreciated a time of peace and quiet, of reflection and withdrawal. For weeks, I had to rely fully on my husband for the simplest of tasks, from helping scrub me in the shower, (after an 18-day wait!), to putting on my left sock and shoe, counting out my 10 pills a day, cooking.

I miss his companionship since he returned to work this week, leaving home at 7:30 and only returning 12 long hours later after his commute.

Soon, I hope, I’ll once more be my usual blur.

A new definition of love

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Image via Wikipedia

What’s romantic?

What’s loving?

What makes you feel cherished?

The past two weeks have revealed new sides of my husband, even after 12 years together. I knew he was fun, funny, kind, affectionate.

But since coming home from major surgery, the replacement of my left hip, I’ve seen, (as has he), wholly new sides to his character.

Our days right now are so overwhelmingly focused on my health and healing, (including avoiding infection and complication), that I’ve gotten the whole bed to myself while he sleeps on the (too soft) sofa. I bought a bottle of chlorhexidine, (what surgeons use to scrub their hands with), and latex gloves and, once a day, he uses both to clean and dress my incision.

He’s been making meals, buying groceries, doing laundry, (which he normally does), helping me in and out of bed, putting on my shoes, socks and sweatpants. Helping with sponge baths, since no showers are allowed for two weeks.

The hardest part? Wrestling me in and out of my (so sexy!) surgical stockings, thick, tight white hose that go up to my thigh and which I wear 23 hours a day to help prevent clots.

He hands me the 10 pills I need every day, at the time I need them, after drawing up and taping to the wall our daily schedule that starts at 7:30 a.m. and stops at 6:00 p.m. He cranks up raucous rock and roll to boost my energy for physical therapy which I have to do two to three times a day. He brings me me a well-hammered ice pack (four times a day.)

He walks slowly and patiently with me as I do my crutch-aided circuit a few times around the garage.

As someone who prides herself on being feisty, strong, quick-moving, independent and modest, you can imagine how this has felt for me. Weird!

It’s one thing to be seen naked when you feel sexy, quite another when you’re bruised, sore, covered with surgical magic marker notations.

Instructive, to say the least.

He apologized this week for not getting me a Valentine’s Day present; I brought him shoes, socks and a sweater from one of his favorite shops, Rubenstein’s in New Orleans.

I can’t imagine a greater gift than a man willing to give up three weeks’ vacation to nurse me back to strength.

Healing is emotional as well

Doctor's office again
Doctor's office again (Photo credit: Sidereal)

One of the most essential elements of healing a body that has been injured, damaged or ill is to soothe and comfort the psyche, the soul of the person whose corporeal armor has, in a significant way, (even in the aid of better health), been pierced.

But it’s the piece that is consistently left out. When you leave hospital after a major surgery, you’re handed a thick sheaf of instructions, some in boldface type, all of which are — of necessity — focused on the physical.

Who addresses the needs of the soul?

Which is why, when I met a fellow hip patient in the hallway, a former dancer, a woman my age, we couldn’t stop talking to one another about how we felt.

Not our bones or muscles, but our hearts and minds.

A sense of shame and failure that years of diligent activity and careful eating and attention to posture…led us into an operating suite. The feeling of isolation, of being cut from the herd of your tribe, the lithe and limber, the fleet of foot. The fragility of suddenly relying very heavily on a husband whose innate nature may, or may not be, to nurture.

And a husband who knows all too well that physical intimacy is almost impossible, sometimes for years, when your loved one is sighing not with desire but in deep pain. When your hips simply can’t move as you wish they would, and once did. It is a private, personal loss with no place to discuss it.

I’m deeply grateful to know a few women like me: feisty, active, super-independent and all recovering, now or a while ago, from hip replacement. Every tribe has a scar, a mark, a tattoo.

Ours is  a vertical six inches.

Time to wear it proudly.

The Bionic Blogger Returns…

Here’s an update:
I entered the hospital early Monday morning for hip replacement surgery and in a very short period of time  — a little over two hours — my doctor told my husband Jose, that it all went well.  He even handed him a small x-ray showing the new device secure in its place.
I’m scheduled to be in the hospital for three days and the physical therapy team assigned to me hopes to have me walking down the corridor by the end of today, my second full day.
My husband was kind enough to develop an email blast list, containing the names of family, friends, colleagues, etc.  This allows him to write one letter and send via the list which then goes out to our circle of support.  Well wishes have poured in from Tucson to Tel Aviv to Toronto.  One friend who was at the Pyramids in Egypt even wrote saying he was “sending the power of the pyramids” to me as he thought about me.  Flowers have started, with one NTC friend, ending a lovely bouquet of pink, yellow and orange flowers.
My hope is that I will be posting once again as soon as Friday of this week.  Stay tuned, thanks for checking in and for all your good wishes.

Thanks to blogging and a bum hip, I’m a cover girl!

Too weird for words, really…

It all started out thanks to my blogging for True/Slant, which is where the editors of this magazine found my writing and liked it enough to ask me to write about my miserable left hip, whose arthritis worsened severely in January 2010, just in time for me to combine writing a memoir with — agonizing pain! Five specialists! Xrays! MRIs! Heavy painkillers!

The corticosteroids I took to reduce the inflammation then destroyed the bone in my hip — necessitating hip replacement (which I am trying to get up the nerve to just get done.)

Joy.

The cover shoot was a hoot. Five (!) strangers converged on our small suburban apartment: an art director and photographer from Atlanta, a make-up and hair artist from Chicago, a photo assistant from Brooklyn and a wardrobe stylist from New York City who brought an entire garment rack filled with possibilities they had chosen for me, based on my many bossy emails of what I refuse to wear and (shriek) my clothing size.

Brave souls, all of us.

It took 4.5 hours to achieve this shot. What you can’t see is the July sweat dripping down my back, nor the photographer sliding up and down my living room wall for support, also drenched from non-stop focus and exertion. Nor the art director, Susan, peering after every shot at her laptop to see how it all looked.

Luckily for me, the photographer, Kevin, and Susan and I had had time the day before to enjoy a long, leisurely lunch and have a chance to get to know one another personally, which made the shoot much less scary than it might have otherwise been. They’re lovely people, warm and down-to-earth, so I never felt intimidated or nervous.

(Thanks to my new book and other projects, I’m fairly used to being photographed for national publication. I even had my pic taken in a bathing suit for some paid web writing I did about my hip.)

The necklace is my own (Ann Taylor), as are the invisible earrings. I’m leaning against our sofa, with lots of artificial light thrown in. The curly hair is natural.

I never thought in a million years this might happen, but it’s already prompted some kind and supportive emails from AT readers.

Here’s a link to the issue…although you can’t access my story (!) online.