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About five years ago, Bren Cox, 57, knew something strange was going on with her health. Her doctors repeatedly told her that her symptoms, like headaches and fatigue, were just a normal part of aging and that she was making a big deal out of nothing. But when Cox woke up in the middle of the night and her head hurt so badly that she couldn’t even see, she had her husband take her to the ER. That kicked off her diagnosis journey, and Cox ultimately learned that she had polycythemia vera (PV), a rare blood cancer. In the three years since she was diagnosed, Bren has tried different treatments, learned how to become her own advocate, and created an Instagram account to help others with the disease. Here’s her story, as told to health writer Alice Oglethorpe.
Sometimes I say it all started in May 2021 because that’s when my health quickly declined and I ended up in the hospital three times in a month. But in hindsight, I can see that it all started 15 months before, in late 2019. Even though I’d never been a headache person, around then, I started getting debilitating migraines. They were so severe it felt like my head was going to explode—sometimes, I would have auras where I’d see lights, or it felt like I had goggles on and couldn’t see normally. But the headaches were so spread out, with months between them, that I didn’t give them much thought.
Around then, though, I also started having lower back pain and feeling tired all the time. My symptoms bothered me enough that I brought them up to my doctors—more than once. And every time they’d be dismissed as no big deal. I was told that what I was experiencing was not uncommon for someone in their early 50s and that what I was going through was probably connected to menopause. Or they would blame it on COVID-19, which I’d gotten pretty severely in 2020. But none of my doctors ever ran any tests or referred me to another provider to see what was actually going on, so I just dealt with feeling crummy all the time. I was sick of hearing those explanations about why I felt the way I did; I didn’t know what else to do.
Then, in May 2021, my health went downhill rapidly. In the span of a few days, I became so exhausted—it was as though I had severe jet lag. My head also began feeling really heavy, like I had a very bad cold and was about to lose consciousness, so I went to the ER. Because of all the pressure I was experiencing behind my eyes and forehead, the doctor thought I was having an allergy attack, so he treated me for that without even running tests to confirm his hunch. Things only got worse after that. The following week, I woke up in the middle of the night, and I couldn’t even see because my head hurt so badly. My husband drove me to a different ER, where I got blood work and a CT scan. That’s the first time I heard the words polycythemia vera, or PV. I wasn’t diagnosed yet—I’d need to take a test and see a hematologist, which is a blood doctor, to confirm it—but it was a possibility.
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Even though the doctor told me not to google PV, that’s exactly what I did. I found out that it’s a rare blood disorder that’s actually a kind of cancer. It affects your bone marrow and causes the body to make too many red blood cells. The result is blood that’s much thicker than it should be. This increases the risk of clots that can prevent blood flow and increase the risk of heart attack, stroke, and other dangerous health events. And guess what? Headaches are another common PV symptom. All the blood clots impact circulation, which is why my migraines were so awful. The overproduction of red blood cells in the bone marrow can also cause fatigue and bone pain, like what I had felt in my back. Everything I’d been going through over the past few years finally started to add up.
While I was waiting to see a doctor to confirm the possible diagnosis, I kept feeling worse and worse. I was exhausted and my back pain was excruciating, so I drove myself to the ER and explained to the intake team that I’d been having horrible migraines and didn’t feel well. They took my blood pressure, and it was 197/156, which is considered extremely high—a “hypertensive crisis,” as doctors call it. My blood had become so thick that it impacted my circulation and spiked my pressure. I was immediately admitted, and I ended up being hospitalized for five days. They tried to draw some blood to help reduce the overall volume in my body, but it was so thick that the needle would get clogged immediately.
That’s when I first met with a hematologist. He tested me for PV, and it turned out that’s what I had. He prescribed a medication to treat it: hydroxyurea. It was only when I went to the pharmacy to pick up my prescription that I was told it was actually a chemotherapy pill—something my doctor failed to mention. I thought I was sick before, but the side effects of these pills were horrible: nausea, dizziness, vomiting, mouth sores, the works. I actually ended up back in the ER (again!) because they were so bad. But whenever I asked if there was a different medication I could try, my hematologist told me this was it. He was so dismissive. I didn’t want to be a bad patient, and I wanted to believe that doctors are pros and know what they’re doing, but I just knew he wasn’t giving me the best care.
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By this point, I had found some support groups for PV on social media. The members taught me that a hematologist is a general blood doctor, not a specialist in my type of blood cancer (a category called myeloproliferative neoplasms, or MPN). So, in 2021, I found an MPN doctor at Emory University’s Winship Cancer Institute in Atlanta and had my first appointment. That changed everything. My MPN doctor ordered a bone marrow biopsy, and it showed that around 37% of the blood in my bone marrow was cancerous. That was the moment when my diagnosis got real, and I had to stop being in denial that this was happening to me. He also told me that he does not prescribe hydroxyurea because there’s better treatment out there, including one that was about to be approved, called ropeginterferon alfa-2b (a mouthful, right?!). Basically, it helps bring blood counts down to a normal range and stops new clots from forming.
In January 2022, I started taking it. There were some side effects. I lost a little hair and felt like I was getting the flu right after I gave myself the injection, but it was nothing like hydroxyurea. And even more importantly, I finally saw improvement. I recently had another bone marrow biopsy, and now only 3.9% of the blood in my bone marrow is cancerous. I’m even considered to be in the category of having controlled PV. It’s amazing. Some patients with PV can even end up easing off the medication and could possibly even stop taking it. I’m hoping one day, that could be the case for me.
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I am pretty active on Instagram and online PV groups because it can help others learn about the disease. I’ve had people reach out to me telling me that they saw my posts about my treatment or tests I’ve had and that their doctors hadn’t mentioned those things. They later message me and say they found a different doctor and are changing treatment courses. Information can save lives!
Right now I’m working on living again with PV. I’m getting more active and want to get back into yoga soon and start traveling to visit my daughters. There’s also so much research coming out, and there are talks that PV might be one of the first cancers to be cured. I know it’s currently incurable, but I can’t let this be what ends me. I have hope.
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