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Cancer Chronic Illness Profiles

Chronic Illness When You’re Twins

Through cancer and celiac disease, these twins helped each other through their diagnoses.

Growing up, Robin Melamed and Tara Liebnick, now 45, were typical twins. They shared the same group of friends and more often than not, they completed each other’s sentences. In college, they joined the same sorority. Then, in their thirties and within a matter of months, the twins got the news—they both had cancer.

Facing a double mastectomy, they mulled over a procedure to rebuild their breasts. Melamed, who panics when she reads about health-related topics online, depended on Liebnick’s research to decide. During Liebnick’s chemo, Melamed flew to Dallas to help out and cheered on her nephew at his soccer games. Through hysterectomies, chemotherapy and lengthy hospital stays, the twins found solace in their relationship that’s like no other.

They’re not alone. Many twins with chronic illness have found that navigating their condition together has both grounded them and lifted them up.

Robin Melamed and Tara Liebnick are twins who navigated cancer diagnoses at the same time.

Cancer When You’re Twins

“What’s made it easier is having each other,” said Melamed, who lives in Houston. “It’s helpful we’re so much alike. We know how to be there for each other. We know what to say and what not to say. Going through this together has strengthened our relationship.”

Liebnick was the first to find out. She felt a lump in her breast. Cancer, her doctor said. Then, she tested positive for the BRCA1 gene mutation, which put her at a high risk for having both breast and ovarian cancer. Melamed was browsing the racks at Nordstrom’s in Houston when their dad called and broke the news about her sister’s diagnosis. She was devastated.

“It was a very scary time,” Melamed said. She also knew that if Tara had tested positive for the mutation, she would too. “I thought, fine, I’ll have preventative surgeries. At the time, it wasn’t on my mind I’d be dealing with cancer first-hand.” Melamed, who didn’t have any symptoms, still decided to have both breasts and her uterus removed. That’s when they discovered she too had cancer, in her abdomen.

“I don’t know how I would have gotten through [cancer] without her…”

As the months progressed, the sisters spoke multiple times a day and late into the night after their kids went to bed, on the phone, by text and over email. When Melamed had surgery to remove the cancer in her abdomen, then got an infection, Liebnick flew to Houston. She slept on a pull-out couch in Melamed’s hospital room for nine nights.

As Melamed lay there, moving in and out of consciousness, Liebnick knew how to bring a smile to her twin’s face. She played the Hamilton soundtrack for her on her phone and wheeled Melamed outside to get fresh air.

“I don’t know how I would have gotten through that without her,” Melamed said. When Melamed finally came home, she recovered in a rented recliner chair. The suggestion had come from her sister, who’d rented one after chemo.

Fraternal twins Jamie Serrano and Zach Friedlander were both diagnosed with celiac disease around the same time. 

Celiac When You’re Fraternal

Fraternal twins Jamie Serrano and Zach Friedlander, 29, have supported each other through chronic illness as well. The twins always had diverging interests. Serrano is more of a book worm; Friedlander was the physical twin. Having celiac disease has given them something to bond over.

Serrano was the first to get diagnosed. She was 16, volunteering in rural Mexico for the summer and wasn’t feeling quite right. Her stomach was off, but she assumed she had a virus or traveler’s diarrhea. She stuck to bland foods like flour tortillas and made do. Back in the U.S., doctors ran a blood test. It was positive for celiac. “An endoscopy showed my intestines were demolished,” she said.

Serrano changed her diet, cut out gluten and focused on fruits, vegetables and proteins. She learned to navigate eating out—which restaurants were safe, what questions to ask to make sure she didn’t get “glutened.” She studied food labels and learned where hidden gluten can lurk.

Friedlander got tested at the time too, even though he had no symptoms. But, he was negative for celiac. So, he forged on, enjoying beers and burgers during his college years and indulging during regular visits to Taco Bell. Then, a few years ago he noticed he was getting light-headed and dizzy. He was anemic. It was celiac.

“It’s given us something to bond over.”

Soon after, Serrano went in for a regular endoscopy to check her intestines. Her brother set one up for the same day. Afterwards it was clear; they both had celiac. As nurses pushed them into the waiting room in wheelchairs, Friedlander told Serrano he wanted to have one last gluten-filled hurrah. Pizza, burgers, beer, cookies and cake. Serrano set him straight.

“She said ‘no you can’t do that,’” Friedlander said. “She told me stories about people who don’t follow the diet, what can happen to them.”

From then on, Serrano has served as her brother’s guide, facilitating his way into the world of gluten-free eating. After his diagnosis, Friedlander regularly snapped photos of food labels and texted them to his sister to screen for gluten. When he moved back home to Chicago from Indiana, she showed him the best gluten-free friendly restaurants, and at grocery stores, pointed out the tastiest gluten-free cookies and crackers.

“It’s given us something to bond over,” Serrano says. “I’ve helped him navigate everything, and we enjoy sharing gluten free food together.”

The twins talk more today than they did in the past, Friedlander said. “It’s been a big help having her,” he said, “and I know she’s enjoyed helping me and having someone who can relate to her. We talk more now. We’re more open and we’re closer because of it.”

Cancer Chronic Illness Essays

Cancer Was My Crucible, And It Made Me More Compassionate

The tragedies of illness can be agonizing to endure, but oftentimes, we come out the other side more loving people than when we went in.

If you saw my friend in the check out line at the grocery store with an expensive bottle of wine, you might feel envious. Jan is a traffic-stopper. Her facial features are perfectly symmetrical and her skin is dewy perfection. You might assume she’s on her way to a fancy dinner party with a better looking date than your husband.

When she came over yesterday, she wore a striking red tunic on her head with a matching red rose tucked behind her ear, a look only a movie star could pull off. It wasn’t one of those coverings that screams Breast Cancer in all caps like most head scarves do, no matter how cleverly they’re tied, piled, wrapped, or draped. Hers had the touch of a deliberate statement, a sense of style sported by a woman who can own any room she enters.

I couldn’t help contrasting her wrap with the one and only head cover I bought in anticipation of my own hair loss back when I got my diagnosis. The American Cancer Society website sold me a white cotton skullcap that looked good on the model, but I knew better than to have any faith in it even as I entered my credit card information. At the time, those scraps of cotton were offered at two for fifteen dollars or one for eleven, and I visualized an underpaid, overworked laborer cranking them out in a dimly lit factory for tightwads like me.

I’m not giving cancer an extra dime, I thought.

I’m not giving cancer an extra dime, I thought, and I ordered only one. It was comfortable but hideous, and I wore it all the time for nearly a year except when it was in the wash. My friend Rebecca sent me fun hats and a bright green wig, but I couldn’t find my playful side when it came to being bald, and trying to look glamorous hadn’t even occurred to me.

When Jan and her turban walked into my living room yesterday, I rushed to take her in my arms. We’ve met in person on only one other occasion, and it was just before she started treatment. Seeing her in person again overwhelmed me.

If it’s possible to touch grief, to taste it, to smell its fragrance, I would say that’s what I did when we embraced. After Jan’s first chemo session, she lost her child to suicide. On the morning of her daughter’s memorial service, Jan woke up with pneumonia. While we hugged, I brushed against the bottomless pit of her sorrow.

While we hugged, I brushed against the bottomless pit of her sorrow.

Looking at Jan’s manicured nails and curated outfit, no one would guess the depth of her suffering. It reminded me of a time in my life when I too endured a sustained season of grief.

During my twenties, my boss’s husband put a gun in his mouth and pulled the trigger. Then a friend with bi-polar disease killed his mother in a terrible psychotic episode. Shortly thereafter, my friend Bill, a guy who wore his homosexuality like a badge of honor, fatally overdosed on street drugs. My friend Kathy made an unsuccessful attempt on her life and then my friend Glenda lay down on the blind curve of a freeway until an unwitting motorist ended her painful existence. It seemed at the time that sadness had no floor, that my very survival required me to trudge through one brutal moment at a time. Most people saw the smile on my face and never knew about my struggle.

Sometimes back then I pictured God throwing rocks at me, his aim spot-on, his appetite unquenchable. I was in therapy for trauma I experienced as a child and the series of bad choices that trauma prompted me to take, choices that piled one miserable circumstance on another.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

I don’t know how Jan will survive the loss of her daughter or the effort cancer demands from people it ensnares in its web. I only know that we have to be gentle, to love one another every chance we get.

First Corinthians reminds us that “Love bears all things, believes all things, hopes all things, endures all things. Love never fails.”

Sometimes love feels as thin as a strand of dental floss, but it’s there, as undeniable as the rising sun in the morning, the stars at night, and the toil of the days. Ultimately, it’s all we have, and I’ve come to believe, no matter how difficult it is sometimes, that somehow, it’s enough.

Advice

Ask Ada: Should I Tell My Daughter I Have Skin Cancer?

Plus: how do you help a family member through their grief when they prematurely lose someone?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

My Mom Is Isolating Herself After My Father’s Death

Hi Ada,

My father died around six months ago. Although his death was not unexpected, it took a huge toll on all of us, but especially my mother.

My mother has always kept to herself, but lately, she’s been completely isolated. She sees my brother, sister-in-law, and their son (her grandson) fairly often, and she talks to me on the phone, but I’m worried about her. She doesn’t have anyone else to talk to, she doesn’t have many hobbies, and she doesn’t have a strong community. When we talk, her affect seems flatter. Yet, she tells me she’s happy living alone and enjoys keeping to herself.

I’m worried she’s developed major social anxiety and won’t leave her house because of that. How do I help her?

-Arielle

Hi Arielle,

There’s two ways of looking at this. First, your mother says she is happy keeping her own company. If she has always been introverted and avoided social affairs, then she’s likely coping as to be expected. As you well know, grief has no set trajectory, so one moment she may be fine and enjoying the quiet of her home and the next she’ll exhibit normal signs of grief, such low energy and a flatter affect.

However, if the isolation began to manifest after your father passed away, you may have something to worry about. You’ve already picked up on a few changes, so continue to be on the lookout for signs that she’s really distancing herself from the outside world.

Grief has no set trajectory.

Has she stopped shopping and instead gets food or groceries delivered? Does she cancel doctor appointments or other commitments? Has she stopped going to church or an activity she once enjoyed? Does she seem afraid to drive or visit enclosed places, like a mall, or wide open spaces, like a park? These changes in her life and behavior tend to point to something more serious, such as anxiety, depression, or even potentially agoraphobia.

Now is an important time to increase communication with your mother. And you don’t have to do it all alone. Call in backup. Enlist your brother and his family to help. Teach her how to video chat, so she can see your face during your regular chats. Suggest your brother initiate a weekly family dinner, so your mom has access to others at least once a week.

I know you said she doesn’t have a strong community, but any positive social interaction will help at this point. If she’s religious, she may enjoy a house call from a priest or church leader.  Contact friends of hers and your fathers and encourage them to check in on her. You don’t have to make a big deal about it to them if you’re concerned your mother would be upset by your meddling — just mention that you want her to socialize a little more now that she’s alone, and you’d love for them to keep in touch with her.

If she is truly avoiding the outside world and becoming recluse, the best thing you can do to help her is to encourage her to talk to a therapist and calmly attempt to get her out of her home. The more isolation she has, the more her social phobia is encouraged. Get her outside, even if it’s in her backyard or for a short walk in her neighborhood. Attend appointments with her as a support who will ease her anxieties of being alone.

It may even be a good idea to dedicate a space to your father, such as a park bench or a brick in a new building. This will give her a special place to honor his memory and extra initiative to spend time out of her home.

Photo by Matthew Henry from Burst

Should I Tell My Daughter About My Cancer Diagnosis?

Hi Ada,

I’m lucky to exist in a teeny tiny family. It’s just me, my husband, our eleven year old daughter and both of our parents. There are no aunts, uncles or cousins, so we’re all extremely close. Well, that’s how it was last year. Almost a year ago we lost my mother and my father-in-law to late stage cancers. It was extremely sudden and they both deteriorated quickly and almost at the same time. My daughter was devastated. She went from being a vibrant little girl to a quiet, anxious one.

Here’s the problem. I just found out that my biopsies were abnormal. I have skin cancer now. It isn’t advanced, and my doctor seems very hopeful, but everything I read online scares me. I’m terrified how my daughter will react. Should I keep this from her and only tell her if treatment progresses and things get more serious? If not, how do I tell her? I’m afraid this will crush her.

Sincerely, Small Family Mom

Dear Mom —

I’m so sorry for everything you’ve experienced — and will experience — in this immensely turbulent year of your life.

I’m not sure this question has a straightforward answer. You know your daughter best, and I have limited information about her here to go on. But based simply on how she handled the death of her grandparents, my advice would be to temporarily hold off from telling her about your cancer, until you ascertain how serious treatment is going to be. My instinct is that if you only need a little outpatient surgery to treat your skin cancer, and if your oncologist doesn’t believe this incident to be much more than a blip, you’re better off sparing your daughter an unnecessary emotional trauma.

If you decide to tell her about your diagnosis, the key thing to focus on is making sure you present the information in a manner which she’s able to understand. Be calm, explain what’s happening, and tell her that you have a plan for how you’ll treat it. Reassure her that your diagnosis won’t have the same outcome as her grandparents. Then, continue to check in with her to monitor how she’s processing the news. By presenting the information in a calm, confident, and unconcerned manner, you’re projecting that everyone is safe and everything will be okay, even if you may not feel that way on the inside.

Most importantly, explain to her that nothing she did caused this.

And most importantly, explain to her that nothing she did caused this. Children often blame themselves or feel guilty after learning their parent—one of the most important people in their world—has something wrong with them, like cancer. Her world has already been turned upside down with the loss of her grandparents, and news like this may make her lose her footing.

If you haven’t already done so, find a counselor that can help your child work through her losses and process your diagnosis—if you do choose to tell her. It doesn’t matter if she is three or thirteen, the loss of integral loved ones at such an early age is something very difficult to cope with, and she likely doesn’t have the skills to do it on her own.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Cancer Profiles

Cancer Can’t Keep The Cat Lady Down

After stage 3 colorectal cancer, Samantha Martin is cancer free and ready to hit the road with her act, the Amazing Acro-Cats.

“It’s my gift in life to be able to figure out an animal’s mind and what motivates them,” says Samantha Martin.

Martin, 54, is the founder of the Amazing Acro-Cats and the Rock Cats, a traveling troupe made up of typical domestic short-haired cats, a groundhog, a chicken and two rats that perform jaw-dropping circus-like acts and even play music. “We’ve added a saxophone and a trumpet, so it’s taken on a free-form jazz feel,” explains Martin, who, outfitted in cat’s ears and either a catsuit or a ringmaster’s outfit, is a big part of the show.

Checking boxes off a seemingly endless to-do list before she departs, Martin is preparing to hit the road in her brand-new bus for a southwest tour. Before she brings the Acro-Cats on tour, though, Martin has one last appointment: getting her bloodwork done to make sure she is still cancer-free.

Meet the Acro-Cats.

Healing Cancer? Cats Can Help

Diagnosed in early 2018 with stage 3 colorectal cancer, Martin was forced to cut last year’s tour short to begin her treatment.After five-weeks of oral chemotherapy, Martin underwent one surgery to remove the cancer and a second seven weeks later to “reconnect” her. While the treatments had side effects, including fatigue, bowel issues, “chemo brain,” and post-operative pain, Martin was comforted by her animal companions, which include 27 cats, an African serval and two Labradors.

“The purring sound lowers blood pressure and helps people to heal, emotionally and physically,” she says. “It’s science.”

“The purring sound lowers blood pressure and helps people to heal, emotionally and physically,” she says. “It’s science.”

A self-described “outcast” with few friends, Martin discovered that she had an unusual rapport with animals early in life.

At the age of 10, she started training the family Lab, and when she was 16 years old, she caught a rat, smuggled it into her dorm room at military school and taught it to do tricks. “I was drawn to misfit animals like rats and snakes,” Martin says. “If nobody likes it, it must be special.”

Later, she enrolled in an animal behavior class at the local community college and ultimately earned a degree in animal service. After interning at a store that trained exotic animals to perform in film, television and live shows, Martin took a job running the rodent and reptile department at a local pet store.

Samantha Martin running a couple of her cats through a routine.

Finding Her Calling

One day, a movie production team stopped in and asked if she could train rodents to climb into a box for a key scene in their film. “I can train them to crawl in a box and answer a telephone,” she told them.

It turned out to be her big break. While she was on set, a WGN news crew showed up and filmed her, later airing a segment that got picked up by CNN and aired around the world. It led to a slew of television spots, including high-profile gigs on Geraldo and Inside Edition.

To supplement her film work, Martin worked as a wildlife educator, giving talks at schools, libraries and birthday parties. She turned her two-flat building in Chicago into a private “zoo,” with a reptile room in the basement and a space for farm animals out back. The whole house smelled like animals, she recalls, but she didn’t mind. “I started coming up with ways to teach them, so that I could demonstrate their abilities with cute tricks,” Martin says.

For example, after watching her coati, a relative of the raccoon with a long nose, dive headfirst into a laundry basket and fish out a pack of gum buried deep in a pants pocket, Martin started putting treats in other places. Eventually, the coati could open a mail box, take out a wallet, remove a rolled-up dollar bill and unroll it to find a treat. She likewise taught groundhogs to raise flags and raccoons to play basketball.

Two cats playing drum and guitar. The drums say "Rock Cats"

The Rock Cats, the Acro-Cats’ house band.

Founding The Acro-Cats

Not to mention her many cats. Weary of giving talks at schools (“I don’t care for children,” she says), in 2005, Martin put her cats to work, launching first the Rock Cats and then the Amazing Acro-Cats. “There are a million dog trainers, but very few cat trainers, and I like a challenge,” Martin says.

It wouldn’t be possible without clicker training, she explains, a method of pairing a clicking sound with a treat to encourage the desired behavior. Starting out with art gallery openings, night clubs and birthday parties, Martin eventually rented a theatre in Chicago for a six-week run. People showed up in droves. “The cats sucked, but people loved the act so much,” Martin says, remembering their first performances.

“The cats sucked, but people loved the act so much,” Martin says, remembering their first performances.

Over the years, Martin’s cats have appeared on Animal Planet’s Pet Star, Must Love Cats and Animal Witness. Her favorite one, Tuna, now deceased, also starred in the independent movie, Zeke. Most recently, Martin and her feline friends appeared on the Late Show with Stephen Colbert, where Martin says they “bombed.” “I’m terrified of public speaking, and the cats feel your stress,” Martin explains.

A woman with dark hair in a circus ringmaster's outfit standing proudly in front of posing cats.

Martin is proud of what she’s been able to accomplish with her cats.

Fur-Ever A Feline Foster Mom

Not just an entertainer, Martin has made it her mission to foster cats as well. She’ll take on an entire litter, train them all and keep the most talented for the act. Those that remain are available for adoption, a service she runs out of the front of her tour bus. Over the past decade, Martin has found “fur-ever” homes for 228 felines.

“You’ve already adopted a cat that has developed a relationship with people, a cat that will meet you at the door and give you a high five,” she says. I can’t save the world, but I can help people build a relationship with their cat.”

“I’m one of the luckiest people alive… because I’ve had all these animals giving me all this unconditional love.”

Martin knows all too well how impactful such relationships can be, offering companionship as a child and comfort in the wake of her cancer diagnosis. That said, she has plenty of human friends and supporters too, people who accept and even embrace her for her uniqueness. When her insurance policy denied a claim, for example, she launched a GoFundMe and raised $76,000, which allowed her to keep the lights and feed the animals on during her nine-month treatment.

“I’m one of the luckiest people alive,” Martin says. “Everybody has sad moments, but overall, I’m a pretty happy person, because I’ve had all these animals giving me all this unconditional love.”

Cancer Chronic Illness Q&As The Good Fight

How Music Heals

A new partnership between the National Institutes of Health and the John F. Kennedy Center for the Performing Arts explores the many ways music can heal the body and mind.

It has long been suspected that music can strengthen and improve the body and mind. But it is only in recent decades, with advancements in brain measuring technologies like fMRIs, that science has been able to prove how. One recently launched initiative, which straddles the border between the scientific and creative worlds, hopes to educate and inspire more research into the topic. Called Sound Health: Music and the Mind, it explores how listening to, performing or creating music involves brain circuitry that can be harnessed to improve health and well-being. It is a partnership between the National Institutes of Health (NIH), the largest public funder of biomedical research in the world, and the John F. Kennedy Center for the Perfoming Arts, a renowned creative arts institution in Washington D.C.

Heavily involved in the initiative is renowned soprano Renée Fleming, a 2013 National Medal of Arts winner and artistic advisor to the Kennedy Center (most recently, she sang at John McCain’s funeral). “The first goal is to move music therapy forward as a discipline,” she says of the initiative. “The second is to educate the public and enlighten people about the power of music to heal.”

In supporting the initiative, Fleming has been giving talks about it at her performances (nineteen thus far), often including local music therapists or researchers. She has also taken part in a brain imaging experiment focused on creativity and improvisation, where she spent hours inside an fMRI machine under the guidance of an NIH researcher. It was the exact kind of research which Sound Health encourages. In the machine, she was given three different instructions: to sing, to imagine singing, and to listen to music. “In my case the findings were a little bit surprising because the most powerful of the three in terms of brain activation was imagining singing,” she says.

We reached out to Fleming and NIH Director Dr. Francis Collins to hear more about this fascinating project.

What are some findings or impacts of the initiative thus far?

Francis Collins

Francis Collins: Over the last few years, I’ve been hearing some interesting reports about researchers using music to improve people’s health. But these were mostly anecdotes, and what was really needed for the field to grow and expand was scientific evidence. NIH, with its mission to improve health and ample funding, is in an ideal position to help build that evidence. And the fact that Renée Fleming and the Kennedy Center were interested in the intersection between music and health was a good indication to me that this topic could get people excited about scientific research and the future of medicine. So we joined forces to create this important partnership.

Music can help Parkinson’s patients walk with a steady gait, help stroke survivors recover the ability to speak, and give cancer patients relief from chronic pain.

Out first goal with the Sound Health partnership was to educate each other and the public on what we’ve learned from research in this area so far. We held an unprecedented scientific workshop at the NIH with some of the world’s leading music and health researchers. Some were investigating how music could help Parkinson’s patients walk with a steady gait, help stroke survivors recover the ability to speak, and give cancer patients relief from chronic pain. It was clear that there was some exciting research in this space.  We’ve since held two public events at the Kennedy Center to share this science with everyone. You can see recordings of the scientific workshop on the NIH website and read a summary here.  Recordings of some segments of this year’s Kennedy Center event are posted on YouTube.

Based on what we’ve learned, the NIH is supporting future research on this promising topic. We’ve announced the availability of $5 million in funding in fiscal year 2019 to support a wide range of research into the effects of music therapy on various health conditions. Because that research hasn’t been done yet, the most exciting results are yet to come.

How is music beneficial to young minds?

Renée Fleming.

Renée Fleming: Music activates more parts of the brain than any other activity, which is amazing. For education one of the things they’ve proven is that children benefit from learning a musical instrument; some of the reasons are obvious: the discipline, the practice. But the scientific piece is that eye-hand coordination through the ear helps them develop academically, with better aural comprehension and better academic outcomes overtime. It seems to be very powerful. It’s a fascinating project and there’s an endless number of things we can explore with it.

What do you hope the initiative will accomplish?

FC: I hope Sound Health will help determine whether and how music could be an effective part of a doctor’s toolkit. At the NIH, our goal is to better understand how our bodies work, then to use that understanding to help people live longer, healthier lives.  And we do that through research. We just issued these funding opportunity announcements about music and health to encourage scientists to submit their best research ideas.

I also hope that our partnership with the Kennedy Center and the National Endowment for the Arts will get people excited about this topic and the role science plays in it. So many people have made music a part of their daily lives, and they’re curious about why it has this profound effect on them. The public events at the Kennedy Center, which you can watch online, will help you learn more about yourself and share in our excitement about how music may play an important role in medicine.

What are some questions you’ve always had about music and its impacts?

RF: This potential of music to connect us with our emotional life. That’s valuable and not really well understood. Also the connection to music and memory. Our senses are hardwired to be used in terms of memory and music is one of the most powerful of these triggers.

As a health official, what interests you most about music and its impact on the mind and body?

FC: I’m fascinated by the ways that music overlaps with other processes in the brain. When you sing or play an instrument, it doesn’t just activate one part of your brain: a whole constellation of brain areas becomes active. And some of these musical areas are partially shared with activities like speaking, which if disrupted can have devastating consequences.  An amazing thing about this overlap is that when the normal speech pathway in the brain is damaged, music can sometimes be used as an alternate path.

When you sing or play an instrument, it doesn’t just activate one part of your brain: a whole constellation of brain areas becomes active.

This finding inspired something called “melodic intonation therapy.” When someone has a stroke that damages the left side of the brain, it can cut off the normal language pathway and make it hard for the person to speak. Therapists will work with stroke patients to sing phrases like “I am thirsty” to use that alternate, musical path instead of the damaged one. It takes a lot of work and practice, like using a different muscle, but stroke survivors have used this technique to learn to speak again.

Scientists have been working hard to understand the complex pathways in the human brain. And here is a payoff where we might use these pathways to improve mental health without drugs or brain stimulation. What’s more, music doesn’t just overlap with language: it also shares brain areas with movement, memory, motivation and reward. These things are hugely important to mental health, and researchers are trying to use this same concept of an alternate pathway to address new categories of mental disorders. If they’re successful, that would be a significant breakthrough for patients around the world.

Cancer The Good Fight

The Magic Healing Power Of A Miniature Therapy Horse

Who says Magic isn't real? This special therapy horse has provided comfort to terminally ill children, and the victims of the Sandy Hook and Pulse Nightclub.

The hospital elevator doors open and out walks Magic, an 11-year-old American miniature therapy horse. Worried faces break out in smiles. Loved ones and hospital staff do a double take.

A little girl, about age seven, tells Magic’s handler that her face hurt from smiling so much. She recently underwent a heart transplant and is fighting leukemia. Nearby, a little boy who was losing his sight because of a brain tumor put his face up against Magic’s so he could always remember what she looked like.

Another little boy with a terminal illness laughs so hard when he sees Magic that his mom begins to cry. She told Debbie Garcia-Bengochea, co-founder of Gentle Carousel Miniature Therapy Horses and Magic’s handler: “We never had a happy day and now we’ll always have a happy day.”

Debbie Garcia-Bengochea, Magic’s handler and co-founder of Gentle Carousel Miniature Therapy Horses, says: “Sometimes you can’t fix things, but you can give someone a happy day.” We spoke with her to learn more.

Debbie Garcia-Begochea, Magic’s handler and co-founder of Gentle Carousel Miniature Therapy Horses

When did you start Gentle Carousel Miniature Therapy Horses and why?

Twenty years ago; back then, there were therapy dog programs and a few therapy horseback riding programs. I was a school principal with experience working with children with special needs. I saw a need. And there’s something magical about horses. People are used to seeing dogs indoors, but not horses and definitely not miniature horses.

Our horses go through a two-year training program. They’re taught to be in tight spaces like an elevator or a hospital room. They learn how to go up and down stairs. They’re toilet trained. We don’t teach them tricks or ride them. Our horses offer emotional support. They know how to approach people.

And they know how to stay calm. People take out their cameras, flashes go off, and hospital alarms make noise. The training keeps them safe.

Magic knows who to approach and when. She can sense who needs her. She’ll approach, let the person pet her, sometimes, she’ll lay her head on someone’s lap. She’s 26 ½ inches tall and very approachable.

Where does Magic work?

Magic has visited children and families at Sandy Hook Elementary School, the Pulse Nightclub, Emanuel AME Church in Charleston, and other places where trauma was front and center. In addition to the victims, Magic and the other horses in the program have comforted medical professionals, law enforcement, and families.

The medical staff working with the Pulse Nightclub bodies worked so hard and didn’t have a moment’s rest. When they saw Magic with her deep blue eyes, they smiled. Some even laughed. It’s like she gave them permission.

When Magic isn’t on the road, she works at local hospitals, hospices, and assisted living centers. Her schedule, like the other horses in the program, are two days of work and a week of being a horse. Horses are herd animals and need to be around other horses. Our horses get to run and play.

Our home base is Florida and we’ve traveled to about 30 states and have about 20 volunteers.

Magic visiting a young boy at Ronald McDonald House.

Is Gentle Carousel mostly run by volunteers?

Yes. We depend on them. We have a group of women who sew beautiful homemade toy horses, which we leave on hospital beds. We do a reading program where our horses hoof-a-graph books. We dip their hoofs in ink and stamp the books, which we give away when we get to the hospital or trauma center.

How many people have you helped?

Since we started, about 25,000. We also have a team of volunteers and horses in Europe. Many work in hospitals and orphanages.

You have 21 horses in your program. Why does Magic stand out?

All of our horses are special and everyone has their favorite. Magic has this special ability to find the one person in the room who needs her the most. At a camp, she approached and stood by one little boy who didn’t speak much. He just learned his cancer returned.

Some of our horses work well with children and others prefer older adults. Magic works well with everyone.

One elderly woman in an assisted living home didn’t talk to anyone until she saw Magic. She hadn’t left her room in six months. When she heard Magic was coming, she got up early to wait. She held an old black and white photo of her as a child sitting on a pony. When I arrived, Magic approached and this woman who had not spoken to anyone in a long while, told everyone how beautiful Magic was.

I didn’t know she didn’t talk to anyone. The staff told me. They had tears in their eyes. Now she talks to the staff and the other patients.

A little girl named Caroline takes Magic for a walk.

Tell me about American miniatures.

There’s a wide range of looks and sizes; they can be as large as 34 inches at the shoulder. That’s pony size. Our horses are around 26 inches tall. They can weigh 100 pounds or less. Magic’s jet black with ¾ apron (white) face and deep blue eyes. Our other horses come in all white, tan, a mixture of white and black or tan and white, or they can be spotted. They all have their own personalities. And they all get along. Horses need to be around other horses.

You’ve probably heard that horses can sleep standing up. While that’s true to get true REM sleep, they should lie down. They do that when they feel safe, when other horses are around. They’re prey animals and in a herd some animals stand guard.

American miniatures can live well into their 30s and they can work as long as they’re happy and healthy.

How do you travel with the horses?

We have a horse trailer, which is tricky to park when we’re in a busy city. Often we need police assistance to help us with parking. Our goal is to get a custom minivan to transport the horses.

What makes Magic happy?

Magic has a big ego. She loves getting attention from children and adults. And if there’s a challenging situation, Magic is the horse who can be counted on.

Cancer Essays

When Health Insurance Is No Assurance At All

What does it say about our system when you can scarcely afford a routine medical procedure even after spending $12,000 a year on health insurance?

Lying in a flowerbed with bark chips poking my shoulder wasn’t the best way to start my 57th birthday. My husband Bob and I had taken the day off from our respective consulting businesses—he was a private investigator, I was a speaker coach—to head up the Southern California coast to Encinitas to shop for a beach coverup, have lunch at the organic paleo café, and take a walk through the Self-Realization Fellowship Gardens. Then my gynecologist’s office called. They wanted me in for another test. I scheduled it first thing, thinking we could head north afterwards.

Instead, thirty minutes after the procedure I found myself in the fetal position at the edge of the medical center parking lot, halfway between chunky mulch and pavement. My body was unclear what it wanted. Pass out? Throw up? Both? I’d sent my husband back up to the doctor’s office for a wheelchair and was trying to slow my panicky breathing. I felt the eyes of the freshly scrubbed parking valet on me. I sent him this silent command, “Please don’t call 911.” We had pitiful insurance. I couldn’t afford an ambulance.

Hard Decisions During Open Enrollment

I sent him this silent command, “Please don’t call 911.” We had pitiful insurance. I couldn’t afford an ambulance.

I’d worked since age 15. I’d always had health coverage through my job or my husband’s. By 2015, both of us were working from home. As self-employed workers we still paid our taxes and social security, but now had to run the gauntlet of private insurance. I was grateful for the Affordable Care Act’s provision for pre-existing conditions, as it meant we could no longer be turned down for coverage. That didn’t make it affordable. Our high deductibles covered little of our care. In 2017 two flu shots and a mammogram were the only care covered at 100%, yet our premiums were over $14,000. Every year I had to weigh the importance of continuity of care against the steep premiums of plans which covered my two specialists. I hadn’t had a primary care doctor or annual physical for ten years.

During open enrollment last November, with both of us in our late 50s, we debated whether we should skip health insurance and pay the penalty. Our 2018 deductible—the cheapest plan—was slated to come in over $12,000. We were healthy at the moment, working hard to watch our weight, eat right, and exercise. Could we risk it? If something happened we’d wipe out our savings, maybe lose our house. We bought in, unwilling to court disaster.

An Unwelcome Birthday Present

All was well until six weeks prior when I started spotting. I’d been on hormone replacement therapy to manage my menopause symptoms. A little blood could be normal, but it kept happening. I ignored it because seeing the doctor and the tests she’d order wouldn’t be covered. I told myself it was because I’d forgotten to change my estrogen patch on time. One day, the flow too heavy to ignore, I called my gynecologist’s office. They scheduled an ultrasound. I paid for the $250 test out of pocket, not covered because it’s diagnostic.

If something happened we’d wipe out our savings, maybe lose our house. We bought in, unwilling to court disaster.

When they called back with my results, they said I needed a uterine biopsy to check for abnormal cells. They warned me it would be uncomfortable. I took the first available appointment on my birthday, not wanting to wait. They wouldn’t be calling for another test so soon if nothing was wrong.

Before she did the procedure, my gynecologist explained that my ultrasound had revealed my uterine wall was thicker than it should be post-menopause, 7.5 mm instead of 5 mm or less. That thickness could be a side effect of the HRT, pre-cancerous cells, or endometrial cancer. Trying to quell my fears at hearing the C-word she said, “If you do have it, it’s the best kind. We almost always catch it early. We do a hysterectomy and then it’s gone. There’s rarely a need for chemo or radiation.”

Treatment I Couldn’t Afford

My first thought was that I couldn’t afford surgery. I knew my doctor was out of network and so was her hospital. If it turned out I needed this operation, she would have to refer me to a doctor I didn’t know.

She told me the biopsy might hurt, as the cervix is uncooperative my age. “If we can’t get the sample we need, then we have to schedule you for the procedure under anesthesia.” I knew I couldn’t afford that. I had to do it there.

When a doctor tells you a procedure will be uncomfortable, have a strong hand to hold. I tried to breathe through it. I tried not to flinch. I told myself to gut it out as tears squeezed out the edges of my eyelids. Finally, it was over. My doctor got what she needed and promised to call as soon as the results were in.

When a doctor tells you a procedure will be uncomfortable, have a strong hand to hold.

On the way downstairs in the elevator I felt light-headed. Bob sat me down in the lobby. Unsure of how to help, he came back with cold water, ginger ale, and a protein bar. He held my hand. He got me outside to a bench for air. He got me to the flowerbed because I thought I might hurl. He left me on the ground when I asked him to, because I knew I should go back upstairs to see a nurse. I hoped they wouldn’t charge me extra for coming back.

An Uncomfortable Procedure

Once I was wheeled upstairs, my blood pressure and pulse were so low they couldn’t get a reading. I heard the nurse explain to Bob I was having vasovagal syncope, an overreaction to the test that happens occasionally, causing my heart rate and blood pressure to drop suddenly. It looked serious but wasn’t a medical concern. My body needed time to right itself.

I suddenly needed the bathroom right away. Bob hustled me over there just in time. He asked if I was feeling better? Not quite. It turned out my stomach did need to empty itself after all. That finally did the trick.

Now that I could stand, he walked me back to the exam room. My pulse was now 45, my blood pressure coming up. The color came back into my always-pale face. They declared me safe to leave. Bob deposited me back on the same bench outside while he fetched the car. I looked at the flowerbed where I’d left my dignity, wondering how, in a building full of doctors, care was still nearly out of reach.

I looked at the flowerbed where I’d left my dignity, wondering how, in a building full of doctors, care was still nearly out of reach.

Once in the car, Bob and I agreed that my 57th birthday deserved a do-over. He drove me home for a two-hour nap. I made myself a birthday treat that night: fudgy chocolate cake with fluffy marshmallow frosting.

A Birthday Do-Over

The next day we headed up to a store where I found khaki Capris and a white linen shirt. I pushed away thoughts about my future as I pulled on clothes in the dressing room. I wondered whether I would be having major surgery with a doctor I didn’t know, and if hysterectomies were inpatient or outpatient procedures these days. We drove to Encinitas for organic Thai chicken salads for lunch. I ate chocolate cake for dessert at home.

My doctor called four days later. “How are you feeling now? Were you able to enjoy your birthday after all? It’s good news, we saw no abnormal cells. I’m going to lower your dose of estrogen. That should balance things out.” I felt the tension I’d been holding in my shoulders start to leave my body.

It feels like a terrible compromise,  to spend so much on a policy that covers so little.

I was thrilled I don’t have cancer, and that if I did, my insurance would have covered at least a portion of my treatment. But it still feels like a terrible compromise, to spend so much on a policy that covers so little. A car accident or major illness could wreak havoc in our lives. As Congress chips away at the Affordable Care Act’s protective provisions, we will see a rate increase of $3,300 next year. If they revoke the provision for pre-existing conditions, I’ll be without insurance altogether. For both those reasons I plan to trade off self-care with activism for the foreseeable future. With occasional slices of cake.

Cancer Essays

Can You Take A Vacation From Cancer?

When my family took a trip to the beach to take a break from my diagnosis, we discovered what vacations can and can't do to rejuvenate the soul.

The bulging suitcases were comforting harbingers of what was about take place: a vacation. My family might have overpacked a little for a four-hour drive to the beach, but this wasn’t just a typical break from the workaday world. This trip was our stab at a cancer-cation: a sorely needed respite from the homewrecker I’d been fighting for the past seven months.

During that period, I’d been diagnosed with breast cancer, undergone a mastectomy and an additional surgery to remove some lymph nodes, and received 36 doses of radiation. This litany of medical interventions sounds almost laundry-list, but it didn’t feel routine. I felt insanely self-conscious about how I looked, and I often felt overwhelmed and exhausted by the need to put on a happy face for my children, ages 4 and 7.  We’d explained to them in an age-appropriate way what was going on, but no way was I going to expose them to my physical pain, emotional depletion, and fear – hell, that shit was barely suitable for the grownups.

Hence, the cancer-cation. We headed out on the open road in hopes that we’d get a break from talking about it, thinking about it, and in my case, dreaming about it. I longed to busy myself with everyday problems like whether or not the kids had enough sunscreen on or whether I’d remembered to put my reading materials in the beach bag. We wanted to turn cancer off, even if just for a week.

A Geographic Cure for Cancer?

It turns out, though, that it’s harder to escape cancer than just driving away from it.

That was something we discovered after just an hour on the road, when I turned the knob of the dial to NPR. Fresh Air was on, one of our favorites, but after just two minutes, Terry Gross announced that she’d next be talking to a folk singer who had been diagnosed with breast cancer, followed by an obituary of a well-known author who had recently died in her 80s of… you guessed it.

I’d never turned a radio dial so fast in my life. Polka medley from a Lawrence Welk album? Death metal at top volume? No problem. Just anything but more cancer.

Next, we stopped at an ice cream shop to stretch our legs. I was choosing my flavor (always Oreo) when the woman who was scooping my cone asked me if I had breast cancer. I said I did, and in earshot of my kids, she said: “Oh that’s awful, my grandmother died of it.” Lead balloon #2 dropped.

This, here, was a reminder of what a carefree life was supposed to look like.

That evening, as we settled into our beach condo, we felt free and happy in a way we hadn’t for nearly seven months. Doing “normal” things like walking the beach at sunset and eating seafood for dinner made us nearly giddy with happiness: this, here, was a reminder of what a carefree life was supposed to look like.

After we got the kids down to sleep, we decided to start watching John Adams, a miniseries about the second president’s life. A certified history geek, I couldn’t wait to put my feet up and dive in. But even here, cancer found me. I soon learned that John Adams’ oldest child, Abigail, was diagnosed with breast cancer at 46. (I was diagnosed five days before my 46th birthday). Worse, the episode detailed her gruesome mastectomy, colonial-style: in-home, with crude tools, no anesthesia, and her family serving as surgical assistants. I ran to the bathroom, hyperventilating.

Wherever You Go, There You Are

I think it was then that I realized you can’t take a vacation from cancer. I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer. Jon Kabat-Zinn was right: Wherever you go, there you are.

I’d run away to the beach in a vain attempt to forget the disease, but there’s no geographical cure for cancer.

But that’s not to say that my vacation was a failure. I’d take that trip again in a heartbeat, because there was precious value in distancing myself, and my family, from the fractured reality we’d been living for more than half-a-year. Sure, cancer was always there to remind me that it existed, but our family still needed the normalcy of a vacation: a week of natural beauty, a bathtub with fish on the shower curtain, and the reminder that there was life beyond cancer, even if we weren’t quite there yet.

Cancer Essays

How I Became A Pink Person

I never really liked the color pink. But then I was diagnosed with breast cancer, and pink became the color that connected me to fellow survivors.

The first time I saw what cancer looked like I was in a science museum with my kids. The exhibit, which focused on microbes, had floor-to-ceiling images of cancer cells and microscopes set up to take a closer look at these rogue cells. I was fascinated and horrified all at once.

This was a few months after I was declared NED, or “No Evidence of Disease,” after a three-year fight for my life. In November 2012 I was diagnosed with Stage IV inflammatory breast cancer. And standing there in the windowless space, staring at the spiky microtentacles of the cancer cell, brought me back to the moment I found out I had breast cancer.

My mind could not process this invisible thing that was ravaging my body. Hearing the doctors talk about cancer cells and tumors and the rate of growth was overwhelming. How could these cells—this cancer—be doing all this damage all while I was at the park with my kids, brushing my teeth, making dinner? Seeing a scan or reading a chart detailing my tumor’s cellular makeup didn’t make it any more real.

Becoming A Pink Person

Enter the color pink. I had never been a pink “person.” It was just another color, something I associated with candy or ballet tutus or my grandmother in Florida. But suddenly pink became something tangible, something to touch and to see when everything else in my world seemed either colorless (chemotherapy) or invisible (radiation). Pink became the color of my cancer, the color of my world.

When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it.

And it gave my family and friends and those around me something to rally around, something to say: this is what I’m fighting for.

Pink did something else. It gave me a touchstone to other patients and survivors. People don’t realize how isolating and lonely it is to be so ill, how you can be constantly surrounded by people but feel so alone. When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it. Felt it themselves, watched someone they love suffer, supported someone into survivorship, said a heart-wrenching goodbye. It’s almost a physical sign: we’re all in this together.

We don’t, by contrast, bond over cells or, worse, crazed tentacle-covered blobs.

A Color That Connects

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds. I have a collection of pink pins given to me by total strangers who support breast cancer research. One is a slim metal pin studded with deep pink rhinestones, a gift from a woman in a restaurant in California. Another is a soft, light pink fabric ribbon from a flight attendant in New York who wore it to support her colleagues. One is from a march in San Jose, an oversized neon pink metal pin that takes up an entire buttonhole on my shirt. I treasure them but also feel it’s my duty to pass them on, like a baton in a relay race. For me the color pink is a reminder that we are all fighting, recovering, persevering.

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds.

Should I embrace another color now that I’m in remission? Something classically optimistic like green? Or purple, the universal color of cancer survivorship? People ask me this. But the color pink and breast cancer will always be a part of my life in some capacity. I have the BRCA gene that puts my kids at risk for cancer if they test positive for the gene. That makes me pink pretty much forever. To me it’s a reminder to be vigilant, and to never forget. Last year, 250,000 women in the U.S. were diagnosed with invasive breast cancer.  More than 40,000 women are expected to die from breast cancer this year in the U.S.

Until that number is zero I will be wearing pink, in all shades.

Cancer Essays

Breast Cancer and the Mom-God Fantasy

When I elected to have my breasts removed because of the BRCA I mutation, my twin daughters had to suddenly come to terms with my mortality.

I have the BRCA I mutation, meaning I had an 87 percent chance of developing breast cancer. After my preventative bilateral mastectomy, I now have a two percent chance. I think I made the right call, but even so, deciding to go through with surgery when there was nothing technically wrong was a grueling choice for me and my family… one that had unexpected ramifications for my relationship with my kids.

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. It was a difficult choice. If I waited and did get cancer, I would have to get the surgery anyway, on top of chemotherapy and radiation. The combination would leave me sick and unable to take care of the household or my children for several months even in the best case scenario; in the worst case scenario, it could have killed me.

An Impossible Choice

After my BRCA I mutation was identified, my husband and I had several conversations about whether it was better to get surgery to avoid a cancer diagnosis, or wait and hope for the best. But how to tell our nine-year-old twins?

We decided to have the surgery. But how to tell our nine-year-old twins? Ultimately, we decided to tell them a week before the surgery–not too far in advance that they’d obsess, but not so soon to surgery as to give them an awful shock.

It didn’t work. My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives. It’s come out in panic attacks, failing grades, angry outbursts, and emotional upheaval.

On the one hand, my children were scared for me. I’ll never forget seeing a page from an assignment my daughter had to do around that time for school. It was supposed to be an assignment to imagine a day in their parents’ lives, but her sheet was filled from top-to-bottom with just the words “PLEASE DON’T DIE, OH NO, HOSPITAL, PLEASE DON’T DIE” over and over again. But they were also angry at me, because suddenly, they realized that I could die. For the first time in their lives, they were forced to view me as a human being. I was no longer immortal Mom, the all-encompassing, immovable presence in their lives. Instead, I was reduced in their eyes to just another lady who could die, and they felt betrayed.

A picture of a mom with two twin nine-year old girls posing with a shaggy scotty dog.

Darlena Cunha, her two twin daughters, and their dog.

In My Daughters’ Eyes, Suddenly Mortal

Slowly, as I finish up my recovery, we are getting back to where we were, but their lives changed that day, not just mine. I went in looking one way. I came out swollen, bruised, and with drainage lines attached. Their dad takes them to school now—something that had never happened before—and we’ve been living on take-out until I could start cooking again. The girls see me unable to perform simple tasks, and it’s taking a toll on them. It makes the surgery not a temporary blip in my immortality, but a constant reminder that the definition they had of me was wrong.

Worse, they now know that they, too, can get cancer. That their genes, too, may contain ticking time bombs. They bombard me with questions I can’t answer: Will I still get cancer? Do they have it? Will they get it? How will they know? Will they have to lose the breasts they haven’t even developed yet someday? Will they die? In their eyes, my surgery hasn’t just robbed me of my immortality: it’s robbed them of theirs.

My kids suddenly worried about me in a way they’d never had to worry about anything else in their lives.

I’m almost completely healed now. I’m cooking again, and doing laundry. I’m here to define ‘infiltrate’ and ‘stealthy’ as my kids take on difficult mystery reading. I can lift my small dog again and wash down countertops. But getting back our family’s emotional flow has been difficult. I sometimes have to remember not to be angry at my children for being angry at me.

Leaving Behind The God-Mom Fantasy

What I’ve learned is not to expect too much, to be happy about little things and bring in joy when I can. So often, we deal with health crises, and nothing, really, can shake up a life more, but in accepting that we cannot change what we must walk through, that we cannot quicken the pace or hide the strain, we are setting ourselves and our families up for a solid recovery, not of the body that had been hurt or ill, but of the relationships tested in the distress of humanity.

In the end, though, I think this experience will make us all stronger, because it helped my family in a way I never knew we needed help. The more time that passes, the more I realize my children had to give up the mom-god fantasy, and, honestly, so did I. Before my surgery, I tried to be everything to them, but during my recovery, they had to learn self-sufficiency. Where once I was waking them up for school and helping them get dressed, now they were on their own as I struggled behind the closed door of a bathroom to empty the plastic recovery drains.

My daughters may no longer view me immortal after my surgery and subsequent recovery, but I can at least be thankful that the experience has better prepared them for a time when I’m no longer here.