Conversations on Clinical Prevention: A Mothers Day Q+A
On Tuesday, May 3rd, The Lynne Cohen Foundation hosted their very first live webinar q+a featuring LCF Clinic Patient, Playwright, and community leader, Sophia Heinecke. Here, Sophia unpacks her experience at LCF’s preventive care clinic located at Bellevue Hospital as well as her work with the Creative Center at University Settlement,a 501(c)(3) nonprofit organization dedicated to bringing the creative arts to people with cancer, chronic illnesses, and through all stages of life.
Amy Cohen Epstein:
My name is Amy Cohen Epstein. And I'm the President and Executive Director of the Lynne Cohen Foundation.
Those of you who know the Lynne Cohen Foundation know that we are a vibrant, mostly in-person organization and we thrive off person-to-person, face-to-face connection. So this has been a very interesting time for us and we thought it was well past time to do just an intimate meeting to let you know what we've been doing this last year as we head into Mother's Day, which is a really special time — bittersweet for me always. We have not just been baking banana bread over here; we have done a lot. It's been really important for me, for the Lynne Cohen Foundation, to continue doing what we've always done this past year, which is supporting our preventive care clinics in Los Angeles, at USC Norris Comprehensive Cancer Center and in New York at NYU.
And as many of you know, one of the main reasons why we work in Los Angeles, at Norris, and in New York at NYU, is because both of those cancer centers have a unique connection to their county hospitals. In LA, it's LA County Hospital. In New York, it's Bellevue Hospital. And both of those hospitals see underserved, uninsured, minority women. And the Lynne Cohen Foundation has always had a commitment to seeing all women and giving all women access to the highest quality preventive care services from the beginning. These clinics opened in the year 2000 and it's been over 20 years since then. Almost half of the women that have come through our preventive care clinics in both of those cities have been uninsured, underserved minority women and we're really proud of that. That's what my mom stood for.
In the past year, we have worked really hard to launch our educational platform, The Seam, The Series for Education and Awareness in Medicine. And one of the cool things about being virtual and working virtually is our ability to get people on the phone and on FaceTime from all over the country and all over the world. So we've been doing webinars and giving access and using our pool of experts out of USC and out of NYU, to disseminate really high-quality education in the field of women's health and wellness to people all over. We've done webinars to women in Abu Dhabi, in New York, in Chicago, obviously in Los Angeles, and it's been really successful and amazing. Of course today, our featured guest is Sophia Heinecke who you will hear from. And she's in New York right now, so there are benefits to being virtual.
I'll leave you with this. I was recently asked to be on the USC Norris Director's Leadership Council Board by the new head of Norris, Dr. Karen Lurman, who's amazing. And we had our first board meeting two days ago that I was on, on Monday, where they asked me to just give an update about what we do and what the Lynne Cohen Foundation stands for. And it really boils down to this: women, know your normal. Know what your normal is, know what feels right to you, and know when you're outside of that. It changes as we get older but when you are feeling like something is off, something isn't right, be your own best advocate and do something about it. The number of women over the last two decades that have said to me, "I talked to my doctor, something was off. I was feeling really bloated and they kind of blew me off and they didn't listen to me. And I said, okay. And it turned out it was something significant." My answer is, "Go get a new doctor. Don't take no for an answer, stand up for yourself." And that is what it comes down to. We support preventive care and we support women, and that is what the Lynne Cohen Foundation is all about. And with Mother's Day, I just want to remind myself and my sisters and all of you, I do this to keep my mom's name and honor and memory alive. She was an incredible woman and she's in my heart and in my soul always, that is why I do this.
So with that, I would like to introduce an incredible woman named Sophia Heinecke. And she is the Arts and Wellness Manager at the Creative Center at University Settlement, as well as a playwright and independent theater producer. She has a bounty of experience, planning community arts programs for people living with cancer or other chronic illnesses, working with older adults, and developing collaborative partnerships with arts and health organizations. With this work, she hopes to honor the memory of her grandmother, Nicole. With that, I'm handing over the mic to Sophia.
Sophia Heinecke:
Thank you so much, Amy. Both you and Christina have made me feel so alive in the work that we all do. And it's great to be among such wonderful matriarchs, to get to know your family's a little bit over the few calls we've had, because yeah, Mother's Day is a really important holiday for all of us who have lost the women who have made us who we are. So I wanted to start a little bit by talking about my grandmother and just telling you all that I remember the most about her, which is still so vivid to me. The rich smell of her Givenchy perfume and her red wine in the evenings, the glamour and function of the Mercedes. She had worked towards her entire life as an Executive Assistant at Hewlett Packard in San Francisco, where my family is originally from. And her two Chanel suits that followed her here from France when she immigrated as a teenager.
Her glamor and her practicality continued through her treatment. She was diagnosed with ovarian cancer the summer of my ninth birthday, and by Christmas, she had discovered she could be anyone she wanted to be in the face of her illness. She purchased a handful of crazy wigs. Every hairstyle looked good on her and she could express any mood or personality. She had a black bobbed wig that made her look like a spy and a blonde wig that made her look like a silent film star. And on Christmas, she wore a red wig and emerald jewelry and looked like a Christmas ornament herself. Redefining who you are during illness, I have come to understand through my work at the Creative Center at University Settlement, is just as important as listening to your doctors and making it through those initial rounds of chemo. Who you are, your individuality is what helps you survive. It's a return to being yourself. It gives you something to live for.
At the Creative Center, which as Amy mentioned, is based in lower Manhattan. We provide free arts programs for people living with cancer and other chronic illnesses. And I see women absorbed in art-making as they're sitting in the chemo chair, allowing themselves to indulge in a positive distraction of painting a watercolor or correcting jewelry or learning to crochet after years of wanting to do so but just never having time for themselves. And what I hear is even more vital than what I see. For every doubt a new participant might have about the length of a brushstroke or the way that they mix colors, there's an artist by their side and a returning participant to cheer them on, to validate the experience of their illness, and to remind this new person that what they've gone through is the very same as what other cancer patients have gone through. Nausea, lack of focus, hair loss, it's the same mold story.
While the individuality that the art-making experiences the Creative Center provides are very important, our community from patient to patient, woman to woman, is how folks find out about our programs. And it's how people living with cancer support each other, especially during COVID. When my aunt who now has my grandmother's Chanel suits called me last year with new information about my own health history, I felt a renewed sense of importance in speaking about illness before diagnosis. My aunt told me she was a carrier for the BRCA gene and her two daughters and I needed to be tested immediately. Through my work at the Creative Center, I was familiar with BRCA and I knew I had a highly increased risk of receiving a cancer diagnosis, even before my 30s. The stigma around speaking about cancer had subsided greatly since the Creative Center opened over 25 years ago, but still, preventative care has never been the centerpiece of our national discussion.
“It's our duty woman to woman, to speak about preventative care.”
As we continue to spread education across our communities, we must recognize, as Amy said, the discrepancy of how word gets around. How genetic testing should not be cost prohibited, especially in communities of color. When patients are interested in genetic testing, they should not need to present the documentation of generations of lost loved ones just to get their first appointments. In the 1990s, when cancer awareness was just starting to build the New York City, the Creative Center would send artists for ride alongs in mammography vans. And the van would set up in a community, provide free screenings. And the artists would set up right there with them, ready to provide the beauty of creating something new, a bracelet or a painting, and even more importantly, providing the comfort of knowledge and conversation.
When I had my first genetic counseling appointment at Bellevue Hospital, I was really nervous. My aunt was scheduled for a double mastectomy and hysterectomy the same week, and all I could think about was my grandmother. One year she was there and the next she was gone. As COVID kept us all at a distance, it was easier to feel alone in the process of this testing, even if my aunt and I were constantly talking on the phone and texting. Dr. Shaw was able to take the time to speak with me, even with her incredibly busy schedule as the only full-time genetic counselor on staff, within the entire health and hospital’s corporation. That's all of the public hospitals in New York City. Dr. Shaw understood my fear, but also was able to give me options for testing at home during COVID, and speak about the next steps of my treatment in a way that made me feel human and made me feel esteem.
While working with her was the first time I had ever had a doctor ask me my gender pronouns, and as a queer woman, that also meant a lot to me. Dr. Shaw was also able to help me see that part of the work with patients, part of the advocacy that we all do, that is so vital to ensure the health of our communities is talking about genetic testing as the first step in preventative care. When my BRCA test came back negative, I was relieved, but that didn't stop me from hounding my cousins to make sure that they also were pursuing testing and telling my friends and everyone I know about my experience with Dr. Shaw at Bellevue. And also making sure my whole community knows the importance of this work. As so many of us have spent the last year socially distant, far from loved ones, it's become clear to me that to keep them close no matter where they are, to keep them safe, we need to have these conversations.
At the opening of our meeting, the Director of the Creative Center popped up for just a second, my dear friend, Robin Glazer. And she told me at one point over the course of her cancer journey, which began in the early '90s, not one medical professional ever asked her if she wanted genetic testing or told her how to get it, not one oncologist or nurse. This is so clear that it falls to young women whose aunts and mothers and sisters have passed on. We have to tell each other, to honor our mothers. It's our duty woman to woman, to speak about preventative care. And I hope that what I've shared with you inspires you to do just that. Amy has done an incredible job of setting the stage about the importance of this work, but I'm just really so thankful to get the opportunity to share my story and to take some questions from you all, and from Amy, who as I said, it's been such a pleasure to get to know.
Amy Cohen Epstein:
Thank you so much. That was amazing. That was really amazing. Your story is incredible. We say very passionately that genetic testing without a genetic counselor is really ill-advised. Can you talk a little bit more about that?
Sophia Heinecke:
Yeah, I can. At first, my aunt suggested that we all just go the route of these kits that are similar to kind of 23andMe. A company sends you a kit. You have the option to do the testing at home. It's very simple and easy, but the thing for me that gave me great pause was that it's very likely when you do those kits independently through a large company, that they will own a part of your genetic coding. And since I'm not really sure what they'll be doing with that information in my genetics, something that is very precious to me, obviously it made me very skeptical of pursuing that route. But in addition, the work that's being done at Bellevue by Dr. Shaw and her team just made me feel, like I said, so human. She was able to tell me before the paperwork for me to sign off was even sent, the way that this might impact my future.
“There are a lot of potential futures when you're living with BRCA. It could mean that you never have cancer, it could mean that you get multiple diagnoses before you hit 40, and it also really changes the way that you need to get pre-screened.”
There are a lot of potential futures when you're living with BRCA. It could mean that you never have cancer, it could mean that you get multiple diagnoses before you hit 40, and it also really changes the way that you need to get pre-screened. So having a doctor be able to tell you just all of those next steps with their guidance and expertise, was really comforting to me. And it's something too that my aunt really advised. She was being seen by someone through the Stanford Medical Center, I believe. And yeah, really similarly, having a doctor there to just tell you what's going to happen to your body if you have to have a hysterectomy or a mastectomy, what's going to happen during this process, I think it's so vital. I mean, that's such a good question.
Amy Cohen Epstein:
Yeah, I think so. And then also, in terms of reproduction and what does that mean and what are the options and what age are you when you're starting to think about this, and what does it mean if you already have children? What does it mean for them? And like you said, for your cousins, there are also a lot of women that are very hesitant to talk about it. One might not want to not address it — not even think about it — or if they do, not tell their other family members.
I have clear, very strong feelings, that knowledge is power. Education is power. And being able to make decisions based on really educational advice from experts is the way to go always. But, that takes a lot of courage. Where were you able to get that strength from, you think?
Sophia Heinecke:
I was really thinking about my aunt and the strength of our family. My grandmother, when she passed away before that even, she had always been so resilient. She raised both my dad and my aunt alone. And it was a time when she was raising them, where women didn't take to the workforce and kind of work their way up the corporate ladder, in the way she was able to do it at Hewlett Packard. So, I think what I learned from her always was to never give up and to make the most of the situation, and that's something that's really important in the work that we do at the Creative Center as well. Because we get to train these artists to not only share their work and their creativity but also to share just these little details of treatment. Have you thought about genetic counseling? Has your doctor talked to you about how getting the COVID vaccine might work or not work with your treatment? Just these little bits of very timely information. And I think that that's just now more important than ever. It's about activating the network.
And I think that, as you're saying knowledge is power, numbers are power too. The more we hear from all of the women in our community at all of these different levels that they're getting genetic testing, that BRCA is something that's on their mind, I think that that's really important.
Amy Cohen Epstein:
Yeah. And reaching out to real experts is a big part of it too, and really taking advantage of that. And those people in your life are people with access to that and we're finding out where that exists. Getting on the internet can be a really bad thing to do. But really listening to the experts in the medical field in terms of when we're talking about preventive care is significant and really important. And I applaud you for doing that. Thank you for sharing your deeply personal story and from such a beautiful place, and from your grandmother, I know she'd be incredibly proud of you and is looking down on you with her wigs and her Chanel suits.
Thank you so much. And thank you to everybody for being here. I promised we would be short and sweet this Wednesday mid-morning in LA, and mid-afternoon in New York. And love you all, and we'll do many more of these. And have a wonderful Mother's Day if you're celebrating yourself as a mom or a sister, an aunt, a mom, a grandmother, any women in your life, please celebrate them, and all of us who brought people into the world or those who brought us into the world. We owe them a thank you.
Sophia Heinecke:
Thank you so much, Amy.
Sophia Heinecke is the Arts and Wellness Manager at The Creative Center at University Settlement as well as a playwright and independent theater producer. She has a bounty of experience planning community arts programs for people living with cancer or other chronic illnesses, working with older adults, and developing collaborative partnerships with arts and health organizations. With this work she hopes to honor the memory of her grandmother Nicole.