Posts tagged Breast Cancer
One Moment in Time: A Patient’s Story

I want to tell you a story.

It took place during the radiation phase of my breast cancer treatments.

My radiation sessions were scheduled at the same time, every day, for six weeks. Each day I saw the same patients and the same technicians. We were all on a first name basis.  I saw the same hot chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation. The one thing that didn’t stay the same was our changing bodies. We were all deteriorating. Not only was my body changing from the radiation but also the deep chemically-induced menopause I was in, was severely affecting my quality of life. If you can imagine how regular menopause affects women who lose their hormones gradually over a period of years, just think how it felt to lose mine in two weeks. I was having extreme hot flashes every ten minutes, twenty-four hours a day, seven days a week, some so harsh they left me faint. Menopause can also create a depressed feeling and I felt that creeping in as well. My doctor told me that losing my hormones so fast due to chemotherapy was doing such a job on my body, it was like driving my car into a brick wall at forty miles an hour. I found his analogy validating because that’s exactly how it felt. Smash! Bang! Boom!

Just to let you know, radiation in itself is actually quite painless. Unfortunately, what happens as time wears on is the skin that’s been radiated gets burned. Sometimes it looks like a fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets so badly burned, the doctors have no option but to stop the treatments completely. That’s exactly what happened to my friend Lily. Lily and I met in the radiation waiting room while she was being treated for breast cancer. She was of Asian decent, and even though she stumbled with her broken English, and I with my Chinese, we understood each other perfectly. Just like schoolgirls, we saved seats for each other every day. We connected on many levels and as the weeks moved along, we developed a deep love and respect for each other.  One day Lily confided in me that she would no longer be coming for treatment.  She opened up her shirt and I couldn’t believe my eyes. The severity of the burns on her chest was shocking. I didn’t know if Lily’s skin was more sensitive than mine or her level of radiation stronger. What I did know was that Lily’s chest couldn’t tolerate any more and her treatments were stopped permanently. I felt terrible for the hopelessness of her situation and, selfishly, I also felt terrible for myself — I would miss her.  I made several attempts to stay in touch, but sadly Lily and I never saw each other again.

That’s not the story I want to tell you.

Another patient I met while sitting in the waiting room, day after day, was Peter.  He had prostate cancer and we soon became buddies. Peter’s treatments were affecting his hormone levels, similar in ways to mine. He was going through a male menopause of sorts, complete with hot flashes, weight gain, frequent bouts of crying, periods of insomnia, low libido and an overall lack of well-being.  He often shared his emotional and physiological changes with me in great detail because he knew I would understand. Peter and I developed quite a bond, playing pranks on each other regularly. Each afternoon, while waiting for his name to be called, he ate a banana from the fruit bowl.  Peter just loved bananas.   One day, he was late for his treatment and I noticed that there was only one banana left in the bowl.  I didn’t want anyone to grab it, so being the thoughtful prankster that I am, I snatched up that Chiquita and hid it in my pocket.  When Peter finally arrived, he ran over to the fruit bowl but alas — no banana.  His disappointment was palpable.

“What’s wrong Peter?” I asked.  “You look so sad.”

“I wanted a banana but there’s none left,” he answered.

“Awww…that’s too bad.  Well, look down here. Oh my goodness. Is this a banana in my pocket or am I just happy to see ya?”  Quickly I whipped out that banana and Peter’s face lit up. What a sight. To most people, this may have seemed like such a small thing, but those kinds of exchanges amused us to no end and it helped get us through the day.

That’s not the story I want to tell you.

We all had our own routines when it came to our radiation appointments. This was mine: I’d sign in, walk into one of five closet-like changing rooms located within arms reach of the patient’s waiting room, put on one of those terribly revealing hospital gowns and leave my clothes on the hook, praying that no one would steal them.  Of course, I really didn’t have to worry too much about that. Being 5 feet tall, my pants would look like knickers on anyone else. After that, I’d sit in the waiting room, have a cappuccino, chat with a friend, read a gossip magazine to get up-to-date with the really important issues in life, and wait for my name to be called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a cold room with a large radiation machine and would hoist myself up onto an even colder metal table. Then I’d slide the hospital gown down to my waist, lie there and watch the huge high-tech contraption move across the ceiling until its projected grid pattern aligned itself with the tattoos on my chest. The machine would then zoom in close, and the technician-of-the-day would run out of the room as fast as he or she could, and hide behind a five-inch-thick Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that dangerous for them, then what am I still doing in here?’

“Are you ready, Marla?” the voice on the intercom would ask.

“Yes, I am.”

 “Okay, then. You can keep breathing, but DON’T MOVE.”

Talk about a contradiction. Then the radiation machine would let out a disturbing sound that alternated between a high-pitched squealing noise and a machine gun popping. In a minute or two it would be all over, only to be repeated several more times on other areas of my chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and I’d do mine by lying still and taking in the rays.

Each day was becoming harder than the next. I started to feel like I had nothing important to do.  In order to bring in some money and keep myself somewhat active and stimulated, I got myself a part-time job at the only place that would hire me, Tusquellas’ Fresh Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH FISH MARKET?  What was I thinking?  Talk about upsetting aromas!!! On the plus side, when I went into a huge hot flash, I’d just leave the customer in the middle of their order and jump into the walk-in freezer at the back to cool off.  Sometimes I’d come out with icicles hanging off my hair. I’m not kidding.

Every day like clockwork, while my spirits were plummeting, I’d leave work and go to my radiation sessions. The technicians would always ask me, “How are ya doing, Marla,” before we’d get started and no matter what I’d answer, they’d never say much back except for the expected platitudes.  I hate platitudes. On a regular basis I would challenge them.  “Don’t be so guarded with me or any of the other patients. We’re not going to hurt you, you know!”  I guess I made an impact because when I received my Certificate of Completion from the Comprehensive Cancer Center, there was a hand-written inscription on it saying, ‘Don’t be so guarded! All the best! Andrew and Judy.

That’s not the story I want to tell you either.

One day, while sitting on the cold slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and you?’ but I didn’t — not that day.

“To be quite honest Andrew, I’m awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t have a purpose in my life anymore.” Then I started to cry and cry and kept crying as if I was making up for all the days that I hadn’t let myself cry. Andrew handed me a Kleenex and gently said,

“Marla, I think you do have a purpose. Maybe you just can’t see it right now.”

“What are you talking about Andrew? All I do is come in here every day stinking of fish, get zapped, glow in the dark and go home. Nothing more than that.”

"Well, I’ll tell you what I see, Marla. The other day we had a new patient. Remember? She came in with her husband, the one with the blue scarf on her head.  Well, as you know, we have to take a Polaroid picture of each new patient for our records, so that we can make sure we’re giving the right radiation to the right person.  Anyway, you and Peter were sitting together, chatting away as per usual.  Then we came into the waiting room to take that woman’s picture, but she refused to let us and started to cry.

‘No, you can’t take my picture. I’m ugly. I look terrible and I feel terrible, and I don’t want anyone to see me like this. No! You can’t take my picture.’

We explained to her that we couldn’t start her treatments until we had the Polaroid, regulations, you know.  Her husband tried to change her mind and another technician tried too, but she wouldn’t budge.  So, we left the room to re-think our strategy while she sat there still crying.  Then I saw you, Marla. You walked over to her, knelt down right in front of her, put your hands on her knees and said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about the picture, and the way you look.  I really understand some of what you feel — not all of it, because I’m not you, but I have to tell you something. Underneath my scarf, I look just like you.’

And Marla, you took off your red bandana and exposed your bald head to that woman, a total stranger.  Then you said, ‘You see?  I look just like you. And you know what else? I think you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful.  I wish I had your looks. I let them take my picture and I’m nowhere near as beautiful as you. Now, if you don’t let them take your picture, then you won’t be able to start your radiation and the sooner you start it, the sooner it’ll be all over and you’ll start feeling better again.’ Well, Marla, the woman sat there for a minute, thought about what you said and blurted out, ‘OK… I’ll let you take my picture.’  As soon as she said that, we scrambled back in, snapped the shot, and got her into the radiation room.  Her husband was grateful and so were we. And now you come in here and tell me that you don’t have a purpose?  Well, all I can say is that what you did for that woman was a wonderful thing. You helped her get through a difficult time. What’s more important than that? I saw you take that banana for Peter and make him laugh. I saw you get that hot chocolate for Cheryl and get her to open up to you. Even though you feel terrible right now, you have to remind yourself that you help people…in more ways than you realize and, in my books, that’s having a purpose — a very important purpose.”

I was shocked by what Andrew had told me. I was more shocked by his total recall.

“How the hell did you know about that Andrew?” I asked. “Do you have hidden cameras everywhere?”

“Actually, yes, we do, in every room, with intercom systems. We watch and listen to everything that goes on around here.”

“Geez…if I knew that, I would’ve put on some lipstick.”

After Andrew left the room, I sat there absorbing all that he had said. He made me feel better.  He gave me a new perspective on things. You see…he took the time for me, to point out that I took the time for someone else.  It was only one moment out of our lives, one moment in time, but it gave so much and sometimes that’s all it takes to help each other get through to the next day and the day after that. Sometimes, it’s just that simple.

That’s the story I want to tell you.

Previously published in the International Journal of User-Driven Healthcare and Cell2Soul.

Marla Lukofsky is a Canadian/American veteran stand-up comedian, writer, breast cancer survivor and keynote speaker. Her voice can be heard as Good Luck Bear on The Carebear Cartoon TV series. Her writings have been published in various medical journals in North America including Cell2Soul: The Journal of Humane Medicine and the Medical Humanities, The International Journal of User-Driven Healthcare (IJUDH) as well as The Online Journal of Community and Person-Centered Dermatology (OJCPCD). Ms. Lukofsky shares her unique journey with cancer and life in the highly acclaimed show ‘I’m Still Here…and so is my Hair!’ to audiences across the Globe. She has also written her memoir by the same title.  Marla’s belief is that if she can touch even one person and have them feel they are not alone, then she has succeeded.

www.marlalukofsky.com

mmlukofsky7@aol.com

http://en.wikipedia.org/wiki/Marla_Lukofsky

The Courage to Reach Out: What Being There Really Means

An Interview with Kelsey Crowe, Ph.D., co-author of There Is No Good Card for This

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Dr. Kelsey Crowe is an author, speaker, and founder of Help Each Other Out, which offers Empathy Bootcamp workshops to give people tools for building relationships when it really counts. She earned her Ph.D. in social work at the University of California, Berkeley, and is a faculty member in the School of Social Work at California State University. Regular clients for her talks and workshops include UCSF and Stanford University, among several others. She is a cancer survivor and human survivor, each day finding meaning in connection and a purpose driven life. You can reach her at www.helpeachotherout.org

INTRODUCTION

by Val Walker

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I first discovered Kelsey’s website, Help Each Other Out, two years ago while doing research on how to comfort people living with serious illness. I loved her honesty, compassion and gentle humor in her writings about how to reach out to people in distress. She was learning to live with breast cancer, creatively weaving her personal experience with her expertise in social work and social justice.  Drawing from her research, insights and stories, she developed an innovative training program to teach relational skills called Empathy Bootcamp. We chatted on the phone a few times about our common interest in the power of empathy and our writing projects. I found her to be warm, encouraging and generous, even though she had recently endured losing her home in a terrible fire. Fortunately, no one was hurt. Later in 2015, I was delighted to hear she was well on her way to landing a book deal, co-authoring a book with the viral Greeting Card designer of Empathy Cards, Emily McDowell. Kelsey and Emily’s book has just come out this January, called There is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.  It’s a wonderful resource with lively, vibrant graphics and illustrations, yet full of practical guidance for the delicate art of reaching out.

Q&A with KELSEY CROWE

Congratulations on your book! What experiences convinced you to write There is No Good Card for This?

Kelsey:  My experience with cancer was an invitation to write my book.

I began writing when my friend in Grad school got cancer, and I wanted to reach out, yet I was hesitant. I felt stuck. What should I say? How did I belong as a friend now? My experience of feeling so powerless as a friend led me to exploring the cause for my hesitancy to reach out to people who were seriously ill. By doing research and interviews, I gathered material about how to offer help for people in times of need.

While developing this book, I worked as a faculty member at California State University, teaching courses on public policy. I found research that convinced me how important it was to publish a guide for reaching out to people in crisis. I created a guide book, and I tried submitting this to publishers, but it didn’t take off at first. And then, I got diagnosed with breast cancer. That changed everything about how I wrote about helping each other, and I revised my book. I realized I needed to make my private life public. I began a website called Help Each Other Out where I could share my own experiences living with cancer as well as share about so many hard times like loss or divorce and others that affect many of us at one point or another. In addition to the Help Each Other Out website, I collaborated with several empathy experts to develop a training program for lay people and healthcare settings called Empathy Bootcamp, which gives people communication tools for being with others in their time of suffering. With a stronger platform developed for my book, I again worked to find a publisher.

Ideally, to enhance my book project, what I envisioned was having it illustrated. I had heard of Emily McDowell, and loved her Empathy Cards, which were going viral in 2014. As a woman who had been through cancer herself, Emily designed greeting cards for people coping with illness. I had wanted a comedic tone to illustrations for my book, and she seemed like the perfect person to approach, but I wasn’t quite sure how to connect with her. Then, one day, amazingly, I received a text from a friend at the New York Trade Show who was sitting right next to Emily! That friend connected with Emily in person, and introduced my book project. Soon I followed up and called her. I found out that she had also wanted to write a book about empathy. We talked, and she was pleased that I had already written and researched so much of the material—that the project was fully vetted and ready for her input. So, we created the book together with her illustrations, humor, and ideas.

Kelsey, what a remarkable story. It sounds like it was “meant to be” that you connected with Emily—fantastic timing, Kismet. You were the perfect duo to create this book!

If you could sum it up, what are the five main takeaways of your book, There is No Good Card for this?

Kelsey:  Here are five takeaways about reaching out to others:

  1. Err on the side of doing something rather than doing nothing. If you are trying to decide whether to reach out or not, it’s better to offer whatever you can, rather than hold back.

  2. You can manage how much you give. Comforting someone can be manageable for who you are, and where you are in life.

  3. It’s much more helpful to listen than to find that elusive “useful” thing to say. Even if you’ve been ill with cancer, it’s important to respect and remember that each person’s experience is unique. Use your experience with illness as a good reason to listen to each other.

  4. Small gestures make a big difference.

  5. Give what you know how to give; and don’t wait to be asked to give.

A few years ago, you started an innovative training program, Empathy Bootcamp. Many of your participants are healthcare providers and caregivers. How do you teach empathy—or how do you teach a way to “operationalize empathy,” as you put it?

Kelsey:  First of all, empathy is about a way to live and not just about doing your job well. Empathy is a part of connecting and listening in all areas of our lives. In the past few years, empathy has become a popular buzz word. People are interested in learning empathy skills, especially in our digital age. In my Empathy Bootcamps, I focus much of the training on listening skills which are essential to putting empathy into action. I present three different categories of listening that each require different skills. It helps to distinguish empathic listening from the other kinds, as empathy is so important as a first step to establishing a relationship.

  • Empathic Listening:  This is listening that builds trust. We start with empathic listening before we go to other interactions.

  • Evaluative Listening: This is where we ask questions to offer up a judgment or assessment.

  • Fact-finding Listening: This is when people ask a lot of questions because they need specific knowledge to be helpful, like when networking with someone to appropriate resources, or when being a patient advocate.

Empathic listening is the kind of listening we should do most of the time. The other forms of listening can come across as judgmental, or take the person off track from what they truly want to talk about--so use evaluative and fact-finding listening with careful discretion.

Yes, so we need to start with empathic listening to establish a relationship with the person before we move into problem-solving mode. I see how empathic listening lays the foundation of trust and understanding before we get to evaluative listening and fact-finding. Otherwise, we feel more like a commodity than a human being!

Kelsey: Right!

I’m so glad you are teaching this vital skill in your Empathy Bootcamp.

On a more personal note, I was wondering if you could share an experience of being comforted when you were first diagnosed with cancer? What were the gestures of comfort that touched you the most?

Kelsey:  It wasn’t so much the gesture itself, but the timing of that gesture. One evening I was so tired, felt so alone and shut down. I was pushing myself hard to make it to the end of that day. And suddenly that evening I received a delivery of flowers. It was so spontaneous and beautiful. Perfect timing.

Another time I told someone I was afraid I was going to die. She just hugged me and held me for a moment, and it helped me so much.

What you said convinces me that the little ways we reach out can be vital. One simple gesture just might just come in the nick of time to get us through hell.

Kelsey: Right. Our words or actions don’t have to be perfect--just reach out. On my worst days, it was such a relief to know someone cared.

So true, Kelsey. It’s been a pleasure talking with you today—I could talk with you all day! Thanks so much.

Kelsey: Thank you!

RESOURCES

Kelsey’s truly helpful site, and packed with resources too:  Help Each Other Out www.helpeachotherout.org

Emily McDowell’s Empathy Cards— uplifting and honest!  www.emilymcdowell.com

A wonderful read and fantastic guide for times we need to reach out:

There Is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.

My Breast Cancer: Reflections Sixteen Years After Diagnosis

By Leah Meyer

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.