Posts tagged Batch4
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machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation.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

Seeking (Birth) Control

I have taken approximately 2,604 birth control pills in my life. Every night for almost seven years, the incessant alarm on my phone sounds at 10pm reminding me to grab my water bottle and swallow my pill. They are a consistent aspect of my life, which being on a first-name-basis friendship with the pharmacist at my local Walgreens epitomizes. They feel like a core part of me, determining when, where, and how I start to bleed.

I began taking them in the seventh grade to regulate my hormones in order to control acne. Contrary to popular belief, I am not alone in this, as many women use birth control to regulate their periods, lessen their cramps, and curtail the debilitating symptoms of PMS.

My experience with these pills has been tumultuous, to say the least. At first, I could not say enough about their strength and success. My skin was clear, I knew exactly when my periods were starting, and I felt so grown-up taking a pill from an aluminum case every day. But that honeymoon period (pun intended) did not last long. About six months after taking my first pill, I returned to the doctor that had initially prescribed them. The pills were changing who I was as a person. My entire family had noticed that the week before my period, I became withdrawn and extremely moody, crying multiple times a day. At first, this was attributed to a combination of cliché teenage mood swings and PMS. However, it wasn’t long until the characteristics that had defined my personality– a quick sense of humor, a happy-go-lucky attitude, and a passion for pulling pranks– had all but disappeared. To my shock, my doctor explained that this was not unusual or uncommon for women taking oral contraceptives. She told me we could experiment with different formulas of pills, but some bodies simply could not handle the pills. I was devastated.

 

I have tried eight different kinds of birth control pills with varying levels of success. Although an inconvenience in my life, I came to terms over the years with the pill being a core aspect of my womanhood. But after spending a semester enrolled in Women, Gender and Sexuality Studies exploring why women deserve more than what society often expects them to accept, I have come to believe that we deserve more from our birth control products.

 My experience is not unique. Women have learned to expect serious side-effects with any form of birth control. These side-effects include, but are not limited to: nausea, weight fluctuations, headaches, anxiety, depression, and suicidal thoughts.

Strangely, there is no outrage about this extreme failure in medication efficacy. In the US, 62% of women are currently on some form of birth control, yet any action being taken to improve it is underfunded and under-appreciated. Women accept less effective medications with more side effects because we, as a society, have learned to be comfortable with a lower standard of care for women.

Widespread apathy towards women’s health is extremely evident when one looks at a recent study experimenting with men’s birth control. In this study, 320 men were given birth control shots every night for eight weeks, in an effort to share out the responsibility of avoiding unwanted pregnancies. The sample considered men of varying backgrounds and levels of sexual activity. Despite potentially optimistic results, we will never see this study brought to fruition. It was halted due to the men experiencing “severe” side effects, such as mood swings and acne. Prior to the termination of the study, many women were hopeful that men’s birth control was finally a solution to their own undesirable experiences. However, the scientists would not allow men to endure these negative side effects for even eight weeks, when millions of women experience them for the entirety of their reproductive years.

This begs the question of why society is untroubled by the less than ideal standard of care given to women yet does not believe it is acceptable for men to tolerate comparable experiences. The lack of women in STEM careers, a reluctance to believe women’s symptom descriptions, and a greed-driven pharmaceutical industry are all connected to this double standard. The compounding of these three elements creates structural inequalities in healthcare that put women in physical danger and must be addressed sooner rather than later.

Women are underrepresented and undervalued in STEM careers. I am a two-year member of WashU’s Women in STEM Club, which aims to increase support and mentoring for women in STEM fields so that they can be better prepared to endure the journey ahead of them. As a college student aspiring to have a future career in the field of medicine, this cause directly affects the trajectory of my life. A 2013 study called “What's So Special about STEM? A Comparison of Women's Retention in STEM and Professional Occupations” explored the environment faced by women in different careers. The results found that women in STEM have a statistically significant increased tendency to remove themselves from their fields. Due to careful consideration of any confounding variables, the study uncovered that the main cause for the mass exodus from upper STEM fields by women is not due to children, as many people tend to believe, but rather because of a “hostile work environment.”

This unsustainable work environment is evident at a well-known and iconic leader in the technology field, Google headquarters. In August of 2017, an executive engineer penned an internal memo to the entirety of Google named, “Google’s Ideological Echo Chamber.” In this memo, the employee explains that women are biologically more predisposed to neuroticism, have less drive for higher status, and are more agreeable than assertive. He claims, “This may contribute to the higher levels of anxiety women report on Googlegeist and to the lower number of women in high stress jobs.” He later explains that accommodations should never be made for any employees on the basis of gender or race, as the only reason women and minority groups are underrepresented in tech is because of “biological disadvantages.” This memo went unaddressed by Google leadership for many days. Eventually, an apologetic email that contained plans for improvement was sent out to the company staff, but the damage was already done.

Women’s perspectives are integral to the creation of a successful product for women, yet the vast majority of scientists creating, testing, and marketing birth control products are men. I believe men cannot possibly comprehend the debilitating side effects of birth control pills, and therefore will not fight as hard as women would to find a solution. Because of this, it is essential that we encourage and support young women considering careers in science–which must occur early in a girl’s life. A 2004 research study done by Patricia VanLeuvan uncovered that there is a massive dip in interest in science careers of young girls between the seventh grade and the first year of high school. Careers that have better representation of women, such as medicine and biological sciences, experienced a lesser decrease in interest than less represented fields, such as engineering. This research shows that when one generation of women are inspired to pursue fields in STEM, a domino effect will result in the coming generations.

A recent episode of Grey’s Anatomy, one of my personal favorite shows, explored society’s shortcomings at recognizing and treating women’s self-reported symptoms . Dr. Miranda Bailey, a world-renowned and extremely respected Chief of Surgery, goes to a rival hospital’s ER and calmly explains that she believes she is having a heart attack. The ER doctors and cardiologists, all her friends and all white males, immediately begin questioning her history of OCD and anxiety, blaming these disorders as the reason for her symptoms. Chief Bailey responds with authority and confidence, relaying that heart attacks often manifest themselves differently in women, with symptoms such as shortness of breath without pain, anxiety attacks, and jaw and neck pain. Even with her expertise and obvious medical savviness, the other doctors refuse to believe her until her heart literally stops beating for two minutes. It is no wonder that doctors regularly disregard women’s self-reported symptoms, when Dr. Miranda Bailey, one of the most beloved doctors in the TV world, was not believed when she described her condition.

A study aptly named, “The Girl Who Cried Pain,” exposed the unfortunate truth that female patients are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.” This statement translates more tangibly to a nationwide average 49-minute wait time for men compared to a 65-minute wait time for women after reporting the same acute abdominal pain in an ER.

The lower standard of care given to women who choose to take birth control is ignored by those who have the power to improve it, specifically a greed-driven pharmaceutical industry. “Big pharma” makes billions of dollars every year off of birth control products, including pills, IUDs, vaginal rings, patches, and shots. These profit margins are only increased by women trying multiple versions of each product, as they are forced to do when side effects are too debilitating for them to function. These profits serve as positive reinforcement for big pharma to continue making imperfect products.

For many years, big pharma companies have gotten away with imperfect pills, knowing that they are the preferred choice of birth control for sexually active women. A recent study in the UK shows that these tides are turning. Bayer Healthcare, a leader in the market of contraception products, conducted a research study investigating women’s attitude towards varying forms of birth control. This research was confirmed by the Office of National Statistics, and found that 31% of women chose, at some point in their lives, to switch from the pill to Long Acting Reversible Contraception, or LARC’s. These women were totally unsatisfied with the side effects and overall effectiveness of the pill and decided that their bodies and minds deserved better.

Society has taught women to expect a lower standard of care from all healthcare providers, ranging from doctors to CEO’s of pharmaceutical companies. This custom is dangerous for the physical and mental well-being of women, which further effects all aspects of society. Therefore, it is time that we, as women, demand more for ourselves. We deserve birth control that does its job with no side effects. We deserve to be heard when we go to the Emergency Room asking for help. We deserve to be represented in fields that make decisions about our health. We deserve (birth) control.

Works Cited:

“(Don’t Fear) The Reaper.” Grey’s Anatomy, season 14, episode 11, ABC, 1 Feb. 2018. https://www.hulu.com/watch/1215330.

Fassler, Joe. “How Doctors Take Women's Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/.

Glass, Jennifer L., et al. “What's So Special about STEM? A Comparison of Women's  Retention in STEM and Professional Occupations.” Social Forces, vol. 92, no. 2,  2013,  pp. 723–756. JSTOR, JSTOR, www.jstor.org/stable/43287810.

Haelle, Tara. “Does Some Birth Control Raise Depression Risk? That's Complicated.” NPR, NPR, 9 Oct. 2016, www.npr.org/sections/health-shots/2016/10/09/497087838/does-some-birth-control-raise-depression-risk-thats-complicated.

JV. “Side Effects Are OK for Women's Birth Control - but Not for Men's?” USA Today, Gannett Satellite Information Network, 1 Nov. 2016, college.usatoday.com/2016/11/01/male-birth-control-side-effects-come-on/.

Planned Parenthood. “Birth Control Methods & Options | Types of Birth Control.” Planned Parenthood, National - PPFA, www.plannedparenthood.org/learn/birth-control.

VanLeuvan, Patricia. “Young Women's Science/Mathematics Career Goals from Seventh Grade  to High School Graduation.” The Journal of Educational Research, vol. 97, no. 5, 2004,  pp. 248–267. JSTOR, JSTOR, www.jstor.org/stable/27548037.

Sarah is currently a junior at Washington University in St. Louis, studying Psychological and Brain Sciences. She strives to one day incorporate her passion for women's health into a career in the medical field.

 

The intersection of art, science, neurotechnology, and disease
celebration, solar etching, 2010 (angiogram of mark-s brain).jpg
valentine, solar etching, 2010 (coronal view of the brain stem, cerebellum, and lateral ventricles).jpg
neuroplasticity (digital collage of hand-pulled prints and mris of my brain).jpg
emerging, solar etching, 2009 (coronal view of the neo-cortex).jpg

I am an artist based in the San Francisco Bay Area who specializes in the intersection of art and science. I focus on brain scans, particularly MRIs, because I consider them one of the primary symbols of Multiple Sclerosis. Since my diagnosis of MS, I have continually undergone brain scans to track the progression of my disease. Initially the sterile black and white images of the MRIs of my brain were terrifying, and I refused to look at them. I began using my art practice to reinterpret these frightening yet mesmerizing images. I seek to disrupt the unsightliness of these digital images, inviting the viewers to stare directly at the beauty and complexity of the imperfect brain.

My diagnosis has allowed me to integrate neurotechnology into my artwork. Through printmaking, mixed media, and textiles I transform my scan into vibrant landscapes in hopes of challenging how society views illness. I create with the intent of transforming how people view the imperfect body, allowing room for celebration, curiosity, and fascination.

My artwork has been displayed in permanent collection at various institutions, universities, and hospitals throughout the country. My heart remains rooted in the narrative of illness. I am now trying my hand at art and design in the clinical setting.

I have been inspired by the power artwork can have to broaden and deepen the narrative around chronic illness. This is the core of my mission, to create artwork that encourages social engagement and spurs conversations. My vision for several upcoming projects combines patient—centered design strategies, evocative artwork, and powerful narratives. I am currently exploring how art, storytelling and technology can be used to revolutionize the untapped potential of time spent in waiting rooms of clinics.

At some point in our lives, we all become patients and are challenged with accepting illness as a part of being human. Chronic disease is an ongoing natural disaster of the body, where the tsunami is a never-ending undulation of change. This disaster leaves in its wake a real sense of fear, isolation and heightened awareness of the fragility of one's body. Many illnesses that are depicted in the media have a narrative that has a beginning, middle and end—a flowing arc to the story. But most illnesses, especially those that are chronic, lack an arc or even a narrative that makes sense to the outsider. Sometimes it can feel overwhelming, lonely, or diminishing. I create with the intent to transform this experience and use a medium that fosters connections and conversation. In doing so I aim to open up people’s eyes to see the unique perspectives gained through living with disease.