Sherry Rouse - phaware® interview 568

She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease

At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn’t cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope.

My name is Sherry Rouse. I am from the Bay Area, California. I was diagnosed with idiopathic pulmonary arterial hypertension in 2016. I feel like my story is a little different than many of the stories of people that I've connected with over the years. I went in for a routine breast cancer screening. I was 30 years old. My mom had breast cancer really young, and so I was on a really intense breast cancer screening schedule. I got an MRI and the doctor called me a few days later and said, "You don't have breast cancer, but you do have an enlarged pulmonary artery." I was like, "What is that?" I had no idea. He said, "I recommend that you go into the ER right away."

I was working. I was actually getting ready to go to a field trip with my fourth graders. I'm a teacher. From there, I checked myself into the ER. They ran all the tests right there that day. They didn't diagnose me that day, but had a pretty clear idea of what my diagnosis was probably going to be at that point. They sent me home and about a week later I got a call from a pulmonologist. The pulmonologist asked me to come in and he gave me the diagnosis of pulmonary hypertension.

I was totally caught off guard. I feel like I had for quite a few years mentally prepared for a possible early diagnosis of breast cancer, because my mom got breast cancer before she was 30. She did pass away. I was mentally prepared for an early diagnosis and,  “we'll take care of it.” To get the call saying I had an enlarged pulmonary artery and just being totally floored, totally taken back and really confused.

My pulmonary hypertension is idiopathic. It's not something that runs in my family. My family is generally pretty healthy. It was incredibly confusing and obviously really jarring once I learned what was going on.

The early days were just really confusing, really anxiety inducing. I went to the pulmonologist. He was wonderful. Shout out to Dr. Gupta at Kaiser back then. He really clearly gave me a diagnosis. He walked me through what pulmonary hypertension is. He asked me all the questions about my history and about my lifestyle, ran additional tests. I got so much blood work done during that time. Then, we came to the diagnosis of idiopathic pulmonary arterial hypertension. I was diagnosed with severe pressures. They were, I believe, close to a hundred at the time of my diagnosis.

Luckily, my parents who were living out of town at the time, they happened to be in town through this whole process and extended their stay, so I had their support through the whole diagnosis and going on medication. Juggling that kind of anxiety and then also still needing to go to work, really being again, just incredibly confused, like, "How is this my life? What just happened to me?"

Being newly diagnosed was an incredibly tumultuous time. My now husband and I, we were only about six months into our relationship. The second time that my husband met my parents was after I got out of the hospital on my day of diagnosis. It was a very new relationship. We had to navigate my PH diagnosis and what that means for us and our future, essentially from the beginning, which has its pros and cons, but I think it's made us stronger in the end.

My husband and I had the opportunity to adopt our daughter recently, so she's two and a half now. I was also told at that time that I wouldn't be able to carry my own children, which was something that I always dreamed of doing, and that was taken off the table pretty immediately. I remember at the time being less worried about that. I was 30. I was in a new relationship, but I was more worried about living than I was about carrying my own children. I think the grief around that came much later. I was just like, "I don't care. I just want to live. Just tell me how I can stay alive and we'll figure out all the rest later."

PH has really put a lot of things into perspective for me around what matters and what things to let go. My diagnosis was close to 10 years ago now, so I've been through a lot of ups and downs in terms of mental health. When I was first diagnosed, I just had my eye on how am I going to live.

I did the infamous Google search that I think everyone newly diagnosed does where it says that you have about three to five years to live. That put me in a really, really dark space. I remember, I think it was my sister that said, "How do you feel now? Are you okay now?" And I was like, "Yeah, I actually feel totally fine now." So she said, "Just focus on that. Focus on today you got up. Today you feel fine. You're going to go and do your thing and live your life. And if that changes, we'll figure it out."

That's kind of just been my MO since. I feel okay and I'm really lucky. I am in a very, very lucky space that I did have an early diagnosis, that I wasn't feeling a whole lot of symptoms before I was diagnosed. I've been doing really well on medication where I live my life pretty normally at this point. I just know that that is such a privilege.

In the days that I do feel anxiety or, “woe is me,” because of my diagnosis, which isn't often at this point anymore, I really just think about one step ahead of me, like, "Today I feel okay. Today I'm going to go take a walk in the sun. Today I'm going to go do yoga," and remind myself that I'm living and I'm okay.

Moving my body has been a huge reprieve for me post-diagnosis in a way that I wouldn't have imagined. Before my diagnosis, I had a lot of shame around what my body couldn't do. I've never been the fastest runner or the most athletic person on the team, and I had a lot of shame around that growing up.

Post-diagnosis, getting on medication, it helped take away a lot of the shame. It's a shitty disease. It's devastating to get this diagnosis. But it also has the ability to bring a lot of perspective. Something that has been just a huge shift for me, post-diagnosis, is the way that I view my body and the way that I view my body's abilities. It's not attached to shame anymore. I'm proud of what my body can do. Even if that means I go hiking with friends and I'm the slowest one out on the trail, I'm like, "Heck yeah, I'm out here." It makes me focus on being strong instead of looking a certain way or getting skinny. It has been more of like, "I want to be strong. I want my heart and lungs to be healthy. Exercise and movement is the best way I know how to do that." It's been such a huge tool for me with my mental and physical health. Even on really hard days, keeping movement central to my day and keeping it a priority has been just a game changer for me.

At one point, I went on a medication that gave me a lot of side effects. I'm not on that medication anymore. It was challenging, and some days I could barely function. My headaches were so bad. My flushing was so bad. As long as I could get up and ride the Peloton for 15 minutes or get out on a walk or just do some stretching, I would call it a win. It just has totally reframed my experience of myself and my experience of PH. That's not something that I would trade at this point, because I really think that it's been a huge tool for me.

I'm in elementary education, so it's a pretty physically demanding job. I'm on my feet all day. I've been working full-time since diagnosis. I've never stopped. I'm also in grad school right now to hopefully become an administrator. So that will keep me on my feet all day every day. I'm not planning on letting PH slow me down yet. Hopefully not for a while. My daughter also keeps us real busy and on my feet, so I'm constantly on the move.

I have dipped my toes in a little bit into the support group space. I think if we're being honest, I wasn't able to relate to a lot of other people. PH is so different and it impacts people in so many different walks of life. When I was diagnosed, I was 30. The idea of carrying my own children being off the table for me was, at one point, really devastating. In my small dabbles into support groups didn't find a lot of support with the things I was going through, specifically.

But I have found a lot of support actually in the social media space. Mostly on Instagram. I've been able to connect with such an interconnected group of women that are similar to my age that really have helped to support me. I think we support each other. If I have a new medication that I'm adding on, I'll reach out to some people that I know are on that one already. I've had phone calls, I've had message exchanges with a lot of people that are going through PH in a similar way that I am that I found really, really, really helpful and empowering.

With this disease, research is so important. Right now, we're at a critical space in time where funding for research is being pulled. I just think about the devastating impacts that it'll have, not just on the PH community, but on the chronic illness community. I think that it's important now more than ever for people to dip their toes into advocacy spaces in the ways that they feel comfortable doing to raise awareness, because when I was diagnosed 10 years ago, I am currently on a medication that wasn't available then. My numbers are back down to normal at this point. So, the constant research and innovations in the medical space are so important. There's a lot to be said for the funding of the research. We need to keep advocating for research and innovations for the pulmonary hypertension community.

I think the advice that I would give to my younger self, first of all, don't Google, please don't Google. Along with that, find a doctor that you trust. Obviously, advocate for a second, third opinion as needed, but find a doctor you trust. Everybody is so different and responds so differently to treatments. So, listen to the advice of your doctor rather than going down Google rabbit holes.

I find that when I talk to my doctor, she brings me a lot of hope, realistic hope. She was like, "If this medication doesn't work for you, we have more medications that we can try. We have other routes that we can take. There are new medications coming up the pipeline that we can try. There's always something that we can do to help maintain your quality of life. You don't have to live a miserable life." That was just so powerful for me to hear, because you think of this disease as life-threatening, progressive. Those words are really scary. But there is a lot of options out there.

Then, find a community that brings you hope. I have, again, connected with a lot of people in the social media space. We all are going through challenges. We all try medications that don't work or that make us feel like shit. But people are out there living really joyful, fulfilling lives. So, to connect with people that are going through some of the same struggles, but also finding joy in their own lives has been hugely empowering for me.

My name is Sherry Rouse, and I am aware that I am rare.

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