First Person Health: stories about ovarian cancer

[00:00:00] This is Overlooked, and I'm Golda Arthur. Overlooked is a podcast that's really built from the personal narratives and experiences of women, because each of these individual stories matter, and each of these stories can tell us something larger about women's health.

[00:00:18] This episode features stories from First Person Health. It's a workshop which teaches people to tell the story of what happened to them, how their health, their bodies and their lives changed from an illness or a diagnosis. If you have a story about your health journey that needs to be shaped and shared and preserved, that's what First Person Health is for.

[00:00:44] Check out our show notes to find out how you can be part of the next workshop. This is a special ovarian cancer edition of First Person Health, and this episode is made possible through the generous support of the Amy Krauss Rosenthal Foundation. The foundation supports ovarian cancer, early detection research, and education initiatives.

[00:01:06] And this workshop, a first person held, happened through the Innovator Grant, which funds projects that raise awareness and brings fresh ideas to the fight against ovarian cancer. So let's get started now. Our first ovarian cancer story comes from Deborah Binder.

[00:01:30] When I'm hiking in the woods, I'm in my happy place. It's a time when I feel connected to my mind, body and spirit. It's a time when I try not to think of my health issues.

[00:01:51] But it's also a time when I reflect on what I want for myself going forward. In 2009, I was diagnosed with ovarian cancer. It came out of the blue.

[00:02:16] I was about to turn 50, and for the 50th birthday celebration, I was training to climb Mount Rainier in Washington State. But that wasn't to be. After seeing my primary care physician, I had an ultrasound after my annual visit and discovered that my ovaries were the size of grapefruits rather than almonds.

[00:02:44] She told me that I needed to see my OBGYN physician to have a hysterectomy. But instead, a good friend who is a physician directed me to a gynecological oncologist for my treatment. And by having my surgery done by a gynec, I had a 35% chance of a better outcome.

[00:03:07] You see, people who are diagnosed with ovarian cancer in general don't only have a 50% chance of living past five years. And here I am at 17 years. And I think it's because that one friend directed me to having my surgery done by a gynec. She also told me to have genetic testing, which these days is very commonplace.

[00:03:35] But in 2009, it was considered experimental. And I did that using my own funds. And lo and behold, it was discovered that I carried the BRCA1 positive gene mutation, which gave me a very high risk of getting both ovarian and breast cancer. And so that 50th birthday year became a long journey of surgeries and treatments.

[00:04:10] Following my debulking hysterectomy for my ovarian cancer, I had six months of chemotherapy. And then another six months of healing from that chemotherapy. At the one year mark, I decided to have a prophylactic mastectomy because most of the cancer in my family is breast cancer.

[00:04:33] And I decided because of that BRCA1 positive gene mutation that I carried with an 85% chance of getting breast cancer, that removing my breasts was the best chance that I had at not getting breast cancer. So for a whole year and a half, my world was surgeries, treatments, and recovery. It was a long road.

[00:05:00] And one of the ways that I allowed myself joy was to go back to the woods. Even though all these treatments have prevented me from climbing high mountains because I now get altitude sickness as a result of my chemotherapy, I still go to the woods to come back to myself.

[00:05:24] I still go to the woods to listen, to listen to the woods and to hear messages that give me hope. And part of that hope is using my experiences to be an advocate for ovarian cancer patients and survivors.

[00:05:46] I think it's important that we find early detection tests and better treatments for ovarian cancer. I always say that if men had ovaries, we'd be much further along in this path. They found treatments for prostate cancer far faster than they have for gynecological cancers.

[00:06:10] And it's because so much money gets directed to men's cancers rather than female cancers. And so when I'm walking in the woods, I think about what is it that I can do to have an impact on other women. What can I do to help the cause?

[00:06:31] What can I do to help researchers across the country find an early detection test as well as better treatments for women that are facing an ovarian cancer diagnosis? While a lot of the drugs that have been developed were not available when I was diagnosed,

[00:06:52] I believe it's because of women like me who are pushing for more federal funding for gynecological cancers that we're coming up with better solutions. Women are living longer with an ovarian cancer diagnosis. And so using my voice, using that calm that I create when I walk in the woods is a way for me to pay it forward.

[00:07:17] And I hope someday I can say I helped find a test for earlier diagnosis. That was Deborah Binder. Our next story comes from Jen Johnson. It was August of 2024.

[00:07:43] I had just found out that my cancer had come back in my lymph nodes. And I woke up to find that my right thigh was twice the size of my left thigh.

[00:08:01] I was horrified that in the matter of hours, moments, minutes, however long, that my cancer had grown enough to strangle my lymph nodes so that my lymphatic fluid could not drain out of my leg and therefore pulled into my leg.

[00:08:25] When I was diagnosed with ovarian cancer in February of 2023, I never imagined what side effects would come. We all know that the treatments that they give us have side effects, but nobody ever really talked about what the side effect of having cancer is.

[00:08:48] And so I spent most of 2023 not really worried about those possible side effects, those conditions that emerged because you have cancer. I had my first flare of lymphedema and cellulitis in January of 2024. I had a repeat incident in February of 2024.

[00:09:16] But at that time, we never were able to connect the dots the way that we can now because hindsight is 20-20. In summer of 2024, my cancer came back and my lymph nodes as it had originally. And my right leg went from 0 to 100 overnight. And I had chronic lymphedema, stage 3, that is not reversible.

[00:09:46] So we did the things. Those things include compression garments on the rack and custom pieces, leg wraps that go from your toes all the way up to your hip. As if having cancer wasn't enough. Having secondary illnesses that are caused directly by the cancer makes it almost unbearable some days.

[00:10:12] That being said, I could not do any of this without my family and friends. My spouse is a great help when it comes to my lymphedema in particular. I couldn't do it without him. That is the sound of the elastic and Velcro on these leg-long compression pieces that I have to wear.

[00:10:41] We also have a lymphatic drainage pump that I use daily that takes about an hour. It's a lot to do. Some of the early pieces that I wore were not gravity compatible. So they would fall off me. I was having to like hoist them back up as it were. And I also live in a very warm climate.

[00:11:05] So wearing compression, wearing these layers of garments in the heat adds another layer to how difficult it is to have lymphedema. I say all this because where I'm at at this particular moment in time is kind of a pivotal moment as it were.

[00:11:35] I am two weeks away from getting liposuction on my right thigh. I have approximately six pounds worth of adipose tissue. That is where my body absorbed all of the lymphatic drainage that had no place to go. Because sadly, thanks to my cancer, I've lost all my lymph nodes that drain my right leg. I have an amazing medical team.

[00:12:02] We have done things to make my lymphedema better. They have worked. Those things include LVAs, which are where they bypass lymphatic vessels to blood veins, and then try to help the flow that way. I've also been on a GLP-1, which has helped me lose weight. Weight does come off my leg, which has been good. There's hope in doing these things.

[00:12:32] No one really talks about how difficult it is to have lymphedema. There's definitely stigma to it. You think of a very swollen limb that doesn't match the rest of your body. So there's issues with body image, body dysmorphia. And the list can go on.

[00:12:54] Also, having lymphedema in a lower extremity makes it harder to do some of the treatments that they're able to do when it's an upper extremity. Perhaps stay on a lot better when it's your arm versus your leg. So I say all of this because my cancer gave me lymphedema. In many ways, it's harder having lymphedema than it is the cancer.

[00:13:23] That was Jen Johnson. Our next story comes from Molly Goodman. Would you like to see your CAT scan? The doctor said. Yes. So he led me out of the exam room to a screen in a hallway.

[00:13:51] He pulled up an image that looked like an x-ray of a human torso. And although I'm not trained to read CAT scans, it was immediately evident that something was very wrong.

[00:14:11] Within my abdomen was a large void that looked like it was pressing my organs to the outer sides of my torso. He told me that I had a mass in my abdomen about the size of a football and he would like to do surgery three days from now.

[00:14:41] When I was 24 years old, I was diagnosed with ovarian cancer. At the time I was going to school to become an eye doctor, I was healthy. I was a normal weight for my height. I was a non-smoker. The only medication that I was taking was a birth control pill.

[00:15:05] And I needed to get my prescription for my birth control pill renewed. So a friend of mine referred me to a gynecologist that worked near the school that I was going to. When I went to that gynecologist and laid back on the table, he asked me how long there'd been a bump beside my right hip. I did not know what he was talking about.

[00:15:32] After the examination, he said, I'd like you to go get a CAT scan done. I said, okay. And we wrestled with my insurance a little bit about it. And they scheduled it for five days later on a Monday. A week from my initial appointment, he said, I'm referring you to a gynecologic oncologist. I went to the gynecologic oncologist and was immediately attempted to be referred for surgery.

[00:16:01] But because my insurance would only cover the surgeon that was doing surgery and not where he was doing surgery was that week, I had to wait an extra week. I went home to central Illinois and I got much worse. My abdomen distended to the point that I could no longer wear my clothes. I was wearing my six foot three boyfriend's t-shirts.

[00:16:30] I was wearing pants that didn't have buttons on them. My back hurt. My heart rate was 110. I looked very ill. I would only lay on my right side because my heart could beat more efficiently that way. By the time I got into surgery, I was very weak. I was sleeping a lot. And I had declined significantly.

[00:16:59] During the surgery, the tumor removal debulking did not go well. The tumor broke apart. I was transfused nine units of blood. And in recovery, my breathing began to get more and more labored. I couldn't take a deep breath. The nurses would administer diuretics to try to help me.

[00:17:26] But eventually, I had to be transferred to a larger hospital. And I was placed on a ventilator and under sedation. While I was under sedation, my medical insurance was bought by a larger insurance. And the larger insurance tried to drop me from their coverage.

[00:17:50] Because the Affordable Care Act had been signed one year earlier, and I now had a pre-existing condition, the larger insurance coverage could not drop me. I would remain in the ICU for eight more weeks. I would eventually be taken off of a vent and have a trachotomy.

[00:18:13] I would go on to receive 12 rounds of chemotherapy between March of 2011 and December 2011. I was staged with stage four ovarian cancer that had metastasized to my liver. And I have been no evidence of disease since October of 2012. That was Molly Goodman.

[00:18:43] Our next story comes from Nikki Myers. I was supposed to go in, have the procedure, and go home. I had this gut feeling that something wasn't right. I couldn't explain it. And I remember waking up in the recovery. Still coming out of the haze from anesthesia. I was strapped to the bed. The monitors were beeping.

[00:19:13] The lights were bright. And I could hear the nurses talking. One of them said, that one had cancer. And I remember thinking, wait, they're talking about me. And that's how I found out. I woke up from what was supposed to be an outpatient surgery and found out that I had stage three ovarian cancer. I also found out that I could no longer have children.

[00:19:41] And that part was hard to explain. Because right before surgery, my doctor had actually told me I'd probably be pregnant by December. So I went in thinking my life was going in one direction. And I woke up and everything had changed. I'm part of a very large family with lots of women that I love. I am a granddaughter. I am a daughter.

[00:20:09] I'm a sister, an aunt, and a cousin. And looking back now, I really believe that feeling I had, that little whisper that something wasn't right, is what kept pushing me for answers. For almost three years, I had been sick. I was exhausted. My periods were heavy and painful. I could barely keep food down. I had stomach issues.

[00:20:33] I went to numerous doctor's appointments, went through several different testing. Everything kept coming back okay. There was nothing wrong. But I kept asking questions. I eventually got a second opinion and had to change my insurance companies just to get the care I needed. My doctors found a few fibroids, and we assumed that that was what was causing my pain.

[00:21:02] So when I went into surgery to have them removed, I was still feeling very uneasy. The morning of the surgery, my nana, my husband, and I prayed together. And I remember my nana telling me, Nikki, God is going to carry you through this. Trust him. Those words stayed with me. Fast forward to my first chemotherapy appointment. My anxiety was through the roof.

[00:21:29] I had a lot of PTSD from the surgery. I had actually sat with my grandfather through his cancer treatment. So I wasn't completely unfamiliar with chemotherapy. But when it came to be my turn, I was terrified of what it was going to do to my body. Then, as the drip began, we sat there and waited. My brain was swirling with all of these different things going on inside my head. And then my vein blew.

[00:22:00] The chemo was leaking from my vein into my arm, and it became extremely cold. So uncomfortable that I almost wanted to rip the IV out of my arm and run as fast as I could. But my husband found a warming blanket station, and he kept bringing me the blankets. He put them over my arm, one after another. He just wanted to do anything to keep me warm and make me comfortable. And I was sitting there thinking,

[00:22:30] Oh my God, what is this going to do to me? And then a woman named Carmen walked up to us. She was an ovarian cancer survivor. And she handed me a bag of hope. There was something about meeting a woman who'd actually walked this road. She didn't have to explain it to me. She understood. And I remember thinking, I want to do that someday. I want to be able to sit beside another woman who was scared and simply say, I'm here for you.

[00:23:00] I've been there. As treatment went on, I started learning more about ovarian cancer. I started reading about the signs and the symptoms. And that's when everything really clicked for me and I had an aha moment. I remember thinking, Oh my God, I wasn't crazy. The bloating, the pelvic pain, the changes in my cycle, the fatigue, the stomach issues. These were things I had been talking about with my doctors.

[00:23:28] And after enough of all of that, you start questioning yourself. Maybe it's me. Maybe I'm overreacting. I was wondering, am I a hyperchondriac? But my body had been telling me something that changed something in me. I wanted other women to know their bodies, to know the signs and ask questions and trust themselves when something didn't feel right. Because their voices matter. Eventually, I finished treatment and I rang the bell. I heard the sweet words of no evidence of disease.

[00:23:58] It was an incredible moment. I was so happy and ready to move on with my life. But what I didn't expect was how hard the aftermath would be. There were were just so many different role and emotions. During treatment, there's a plan. There's an appointment. There's a doctor. There's next steps. And then, when you go home and you're fully in remission, you think, Okay, now what? I had to learn to live in that body that had changed overnight.

[00:24:27] I was navigating surgical menopause. I was 35. I was figuring out hormone replacement therapy. I was figuring out who I was after everything I had just been through. And I don't think people always understand that part. You can finish treatment. You can be in remission. And you can be incredibly happy to be alive and still not feel like yourself. My body had changed. My future had changed.

[00:24:56] And I had to figure out who I was now. I learned that survivorship isn't just about being told you're cancer free. It's learning how to live with everything that happened to you. And somewhere along the way, I realized cancer had taken a lot from me. But it didn't take my voice. Cancer doesn't define me. But I never forgot what it felt like to be that woman who was scared.

[00:25:24] Who didn't know what was happening. Who just wanted someone to understand. My mom has always told me to move forward. And I think I finally understand what she meant. You don't forget what happened. You carry it with you. You learn from it. And you keep moving forward. So that's what I'm doing. I'm moving forward and I'm showing up for the women who are here. The women we've lost. And the women who may still be questioning that little voice inside them. Because I know what it's like to wonder if you're imagining things.

[00:25:53] And I know what it feels like to finally realize you were listening to yourself all alone for a reason. First Person Health is a workshop that gives listeners like you a chance to create immersive, powerful storytelling about women's health. The kind Overlooked is known for. And it's built around your story. That's what you learn in this class. So if you're interested in applying to be in it,

[00:26:20] check out our show notes in the episode description for the link to sign up. Thanks for listening. Overlooked is here for information and empowerment, but not medical advice. Every person's body is unique. So if you have questions, it is best to speak to your doctor or healthcare provider. We're building a community around women's health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast, wherever you're listening to this.

[00:26:50] Or you can show us some love by writing us a review and sharing this episode with someone. Overlooked is written and created by me, Golda Arthur. Jessica Martinez de Hoz is the show's producer. You can stay up to date with the show by signing up for the newsletter. And following us on Instagram and LinkedIn. We read every review and email. So write to us hello at overlookedpod.com. Thanks for listening.