“You’re normal”

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Fragility is humbling and frightening

 

By Caitlin Kelly

It’s been a rough week, slowly recovering from my last radiation treatment — October 15 — and still fighting its cumulative fatigue and insane itchiness on my left breast. I was at my wits’ end, crying in public, (I almost never cry anywhere), just done.

I had a follow-up meeting with the radiation doctor, to be told I’d gained (!?) 10 pounds in six weeks and now needed blood tests to see why. This despite seeing my clothes fit more loosely and gaining compliments on my apparent weight loss.

Our GP, thankfully, saw us an hour later and did the tests; (I’m fine.)

But I started crying in his office, weary of all of it.

I apologized for being a big blubbering baby, ashamed and embarrassed by my inability to control my emotions.

“You’re normal,” he said, calmly and compassionately.

Jose, my husband, sat in the room with us, listening as I absorbed this pretty basic fact.

What, I’m not made of steel?

I’m…vulnerable?

Human?!

Kelly’s tend to be (cough) ambitious and driven; three of us won major national awards in the same month, when I was 41, my younger half-brothers then 31 and 18; I for my writing, they for business skills and for a key scientific discovery, (yes, the youngest!)

We tend to aim high, compete ferociously for as long as it takes, (each of my books, later published by major NYC houses, were rejected 25 times), and usually win, dammit!

We keep our emotions very close to the vest and keep small, tight circles of intimates. I don’t really do acquaintance.

 

Being weak, scared, in pain, exhausted and, even worse, letting others see us in this condition?

 

Terrifying.

I’m slowly getting used to it.

Compassion for my fragility is my new oxygen, as much for myself as the gratitude I feel for that shown to me.

 

 

20 days later…done!

By Caitlin Kelly

 

caitlin team

With their permission — the team whose kindness and skill got me through; Left to right; manager of clinic, Katrina; tech Yadi; Dr. Andrews; nurse practitioner Amara; receptionist/scheduler Khaleila and tech Susan.

 

I got to ring the gong today!

It’s the lovely ritual — some hospitals use a bell — with which patients mark the end of treatment. Jose, as he has for so much of this summer, came along to keep my company, to and celebrate.

It was a day of teary good-byes as well. Who would cry leaving a hospital clinic? If the team was as kind and fun and funny as mine was…you would, too!

 

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I had been  heading to our local hospital every morning for 20 days, the time prescribed for radiation for my left breast after surgery. I had a lumpectomy on July 6 removing all cancer, but this was considered a standard course of treatment to make sure nothing minuscule remained.

It began with a simulation, which was uncomfortable and disorienting, and also included weekly X-rays and a weekly meeting with the radiation doctor, a woman I liked a lot.

For the sim, I lay on the long narrow table while the team decided how to position my body and practiced it.

At the sim, they also gave me eight minuscule black tattoos — barely the size of a freckle — three on my front, five on my back — so the techs could align my body into position each time using laser beams. (It’s all stunningly space age.)

 

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The entire machine pivots around you. The blue rubber ring is where I placed both my hands, my face in the cradle.

The actual daily treatment was painless and quick , once the two technicians shimmied me into precise position on the table. I lay face down, with my left breast dangling, to minimize radiation to my heart and lungs — about 24 seconds per side.

Here’s a link to the website for the machine, a Varian Trilogy.

The machine is enormous, and you get used to hearing it whirring into position, with a sound sort of like running water, as it pivoted to one side, then overhead, and down to the other side of my body.

With my face in a cradle, and my arms in a sort of V-shape above my head, I saw only peripheral flashes of light, heard a buzzing noise, and felt nothing.

The hardest part, initially, was the strain on my tight left shoulder staying immobile in that position.

The techs were always extremely kind and upbeat — apologizing every time they had to move my body into position and (gently!) move my other breast out of the way. They always placed a heated blanket over my bare back, put a scented strip beneath the cradle for my head and played a variety of music during the procedure.

Sort of a spa, I joked!

 

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It’s enormous!

 

The clinic staff did everything possible to make it less frightening. There’s a huge fish tank in the waiting room and free coffee and tea and snacks and piles of new magazines and a television you can mute.

You can sit as long as you like before and after treatment, and there are never more than two or three people waiting.

I’m lucky that ours is a small suburban hospital and not some enormous, bustling big-city facility.

I never felt like a number, but a human being.

Of all the tests and treatments my body experienced this summer, this was in some ways the easiest since at least it was non-invasive — and, luckily, I don’t need chemo.

 

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I have no idea what these numbers mean. It’s all quite mysterious.

 

But, by the end, I was done; I was really tired and my skin sore, itchy and irritated.

I got to know several other patients, as we all came at the same times every day. There’s a powerful sort of intimacy in a space like this. We don’t need to say much or ask probing questions. We can share a hug or an eye-roll.

We all arrive unwillingly, alone or with a loved one.

And we all pray for the best possible outcome.

Exposing oneself to millions

By Caitlin Kelly

Thanks to a reader here, I decided to pitch one of my earlier blog posts as a larger, reported story about medical touch — and my own experience of it — to The New York Times, and it ran today, prompting many enthusiastic and grateful tweets.

Here’s the link, and an excerpt:

It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.

Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.

I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.

 

It is decidedly weird to out one’s health status — let alone discuss your breast! — in a global publication like the Times — but it also offered me, as a journalist and a current patient undergoing treatment,  a tremendous platform to share a message I think really important.

 

I hope you’ll share it widely!

 

 

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Every patient needs to be touched kindly and gently

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.

 

A summer of reckoning

 

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By Caitlin Kelly

 

I’m so ready for this summer to end!

 

Not being a beach person, I don’t spend the year eagerly awaiting summer, as many of our friends do.

And this summer has felt like a series of waves smashing us both in the face:

— Husband now using insulin and adjusting to all that it entails

— My breast cancer diagnosis right around my June 6 birthday

— The ensuing tests, procedures and appointments that have consumed precious days of lost work/income since my husband and I are both wholly freelance, with no paid time off that we don’t fund ourselves. (Thank God for savings.)

— Multiple $100 co-pays to have some of these tests and procedures.

— An infection in my breast, six weeks post-op. Extremely painful, but resolved. Breasts are such sensitive things!

— Two friends widowed the same week, a friend’s young adult daughter dying and the sudden and shocking death of a former colleague and friend.

— Far too many days shuttered indoors with AC blasting, curtains drawn, escaping 90+ degree heat

— Far too many days with torrential rain

OK, what’s been good?!

 

— Meeting a new Canadian-in-the-States friend, a fellow writer living in Oakland, CA and his husband who came to NYC and joined us for dinner.

— The thoughtful gift of a classic Hermes silk scarf from a friend; it belonged to her mother, who died last year and was a dear friend of ours.

— So many loving cards, emails, flowers and phone calls from friends worldwide as I adjust to a new reality.

— Blowing insane money on a designer handbag, (on sale, dammit!) after my diagnosis

 

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— Jose made us gorgeous new wooden planters and the brilliant orange marigolds and fragrant lavender have been amazing. I love watching bees dive into the salvia each morning.

— Discovering how multi-talented my friends are, both journalists like me, one of whom made us home-made soap, the other really delicious home-made bread. I love all things artisanal and am in awe of such colonial skill.

— Snagging a potentially very good new freelance opportunity after seeing an editor participating in a Twitter chat. We met in NYC for lemonade and hit it off.

 

How’s your summer been?

Highs?

Lows?

A few more thoughts about feelings

 

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By Caitlin Kelly

 

It’s been quite the rollercoaster, kids!

First off — very good news! My surgery July 6 went great and I’m free of disease.

What a blessed relief. I start radiation treatment in September.

But…what a disorienting time it’s been.

Jose, my husband, and I are career journalists — who, since the age of 19 when we began working for national publications even as college undergrads — learned early that having, let alone expressing, our feelings was an impediment to just getting shit done.

When you’re on deadline, no matter how stressed/tired/hungry/thirsty/in pain you might actually be, you have to get the bloody story done.

Jose, working as a New York Times photographer, once stepped on a nail so long it punctured his boot and his foot while covering the aftermath of a hurricane in Florida. He’d flown down — yes, really — aboard Air Force One, as he’d been in Connecticut covering Bush. He got a tetanus shot as the jet took off to head back to New York.

But this has meant, for decades, whatever we truly felt in a difficult situation — also listening to and photographing war, trauma, crime victims, fires — we suppressed our fear, grief, sadness. It might have popped out later, privately, or not.

Ours is not a business that welcomes signs of “weakness” — you can lose the respect of peers and editors, losing out on the major assignments that boost our careers if you admit to the PTSD that can affect us — even if it privately stains our souls with trauma for years.

This cancer diagnosis, and the sudden and reluctant admission of my own very real vulnerability, blew my self-protective walls to smithereens.

I’ve never cried as much in my entire life, (I never was one to cry), even in the toughest situations, as I have in the past month.

Tears of fear and anxiety.

Tears of gratitude for friends’ kindness.

Tears of pain. It’s a much rougher recovery than four previous surgeries on my knees, shoulder and hip.

Tears of pure exhaustion from being medically probed and punctured for weeks on end.

Tears of worry I won’t get back to being wry, wise-cracking me. (If not, who will I be?)

I feel like a lobster cracked open.

I’ve spent my life being private, guarded and wary of revealing weakness, vulnerability or need.

My late step-mother loved to taunt me as being “needy.” That did it.

I was bullied in high school which taught me that authority figures who did nothing to stop it didn’t care about me as a person, just a number in a chair.

But this has been life-changing — not only in the rush of so many negative emotions — but the kindness, gentleness and compassion I’ve also felt with every single medical intervention. Ten minutes before being wheeled in the OR, I was laughing with my surgeon and her nurses. That’s a rare gift.

I also feel some shame at how infantile one becomes — focused with ferocious selfishness  — memememememememe! — when in pain and fear. Two dear friends were widowed and another’s adult daughter died of cancer within the same month as all of this, and it’s taken a lot of energy to offer them the attention and love they so need.

People have offered to talk to me about their experiences of breast cancer. I can’t. Too often, they plunge into detail and I can’t listen, process and empathize. It’s too much.

That may be my own weakness, because feelings can feel so overwhelming.

Interesting times….

 

Feelings?!

 

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By Caitlin Kelly

Do you start most sentences with “I think” or “I feel”?

Having, managing, expressing (or suppressing) feelings is a big deal in my life.

As someone who faced and had to cope alone with mental illness and alcoholism in one parent and frequent work-related absence in another, I learned early that no one had much interest in hearing how I felt about all of this.

So I learned to bottle it up, or to share only with close friends.

Living in boarding school and summer camp ages eight to 13 (school) and eight to 16 (camp) also meant being surrounded by strangers, some of whom became close friends — but some of whom were bullies.

You learned to keep your counsel.

So a recent workshop at a writers’ conference — where the audience was urged to write “I remember” and dredge up some memories — proved both painful and illuminating for me.

Some of us then read our initial sentences to the room, maybe 150 other professional writers; I did, as well.

I was amazed and moved by what I heard.

It made me much more aware of how limited my ability to express some feelings still is — even later in life.

I’m reluctant to show vulnerability.

I very rarely say “I love you” to someone, even when I feel it.

I’m much more comfortable (which tends to unnerve others) expressing dismay, outrage or frustration — less tender and delicate emotions.

Except — thanks to a diagnosis I received since writing this post (tiny/early/contained breast cancer) — my view has shifted radically and I’ve told a number of friends, neighbors and even professional colleagues.

This is not something to face alone.

It’s also exhausting keeping up a brave face when I don’t feel at all brave or badass but feel worried and tired dealing with six (!) doctors, even if all of them are people I like.

The greatest challenge so far has been managing my anxiety, a battle in itself, while absorbing and making lucid decisions about treatment. It’s a lot to manage.

 

Are you at ease having and expressing your feelings?

 

Fear Versus More Fear — Why Women Want Mammograms

Mammography pictures, normal (left) and cancer...
Image via Wikipedia

Like many women, I’m confused and alarmed by the recent decision that mammograms aren’t needed by women under 50 and annual exams  only needed every two years for women over 50. My mom, who is fine, had a mastectomy 13 years ago which has made me, like anyone with a history of this disease in their family, hyper-vigilant. I had my baseline mammo at 35 and faithfully get one every year. The summer of 2002 was a little terrifying as some cysts showed up in my right breast and had to be watched. They were nothing.

Would I have been better off utterly ignorant?

Mammos, as anyone who’s had one and the photo I chose for this post make clear, aren’t comfortable. Your breasts are squeezed as flat as possible between two plates of glass, for what feels like ages but is likely 30 seconds. The frightening part is awaiting your results and, like thousands of other women, every year I shake with anxiety. Thank God, so far, I have not been hit with this disease. But I cannot imagine that not knowing what is happening to my body, choosing deliberate ignorance (even with false positives), is better.

The exam gets easier as you age, as breast tissue thins and mammos, typically, hurt less as a result. I plan to keep getting mammos and keeping a close eye on the twins. I’m betting many women will do so as well.

Breast Cancer: Too Many Doctors, Too Little Communication — But Smile, Honey!

Washington, UNITED STATES: A breast cancer sur...
Image by AFP/Getty Images via Daylife

Any woman hoping to avoid breast cancer knows mammograms are an essential part of that effort. Yes, they’re uncomfortable  — (OK, squishing your breast flat between two plates of glass is not a laugh riot) — and, if you don’t have health insurance, you’ll have to pay for them. As someone whose mother had a mastectomy, (and is fine more than a decade later), I had my baseline mammo at 35 and am careful to have one every year. Once you’ve had it, though, your results can be wrong, delayed or mis-read, a potentially fatal error.

In the U.S., a medical world filled with the most arcane of specialties, there is none devoted exclusively to breast health and care. Today’s New York Times has a powerful and fascinating op-ed about why this is so.

“Given the haphazard growth in medical specialties and varied training programs for obstetrician-gynecologists. it is no surprise that there is a mismatch between patient needs and caregiver skills. Campaigns to raise awareness of breast cancer must do more than push for a cure. They must also seek to improve the way we organize care for those who suffer from this illness.”

Today’s Times also has a profile of author Barbara Ehrenreich who, when she got breast cancer, was really pissed off to discover how much peer and social pressure women face, once diagnosed, to “be positive.” She wrote and sold a book about it, but most women don’t have that outlet for their outrage. Whatever a woman is feeling, it’s her body, heart and mind. Let her feel it. It’s cancer, already!