Finding Purpose While Living With a Chronic Cancer'
In 2008, when I was 38, I was told that my life as I knew it was over. I had gone into the hospital with my third unexplained blood clot, only to discover I had polycythemia vera (PV). This rare, chronic, blood cancer caused my body to make too many red blood cells, resulting in intense fatigue, shortness of breath, and blood clots, among other symptoms. That meant I could forget about the competitive mountain bike racing and riding my sport bike that brought me so much joy. I was told I needed to overhaul my diet and that I may never be able to have children.
I had known something was wrong with my body since my mid-20s but struggled with misdiagnosis after misdiagnosis. I felt relieved to finally know what was wrong with me, but I couldn’t believe it was cancer. I was shocked and devastated. I thought the future had no hope and I was going to die.
A long road to diagnosis
For years I saw multiple doctors about my worrisome symptoms, but due to my young age, they were dismissed as signs of stress or overwork, and I was left without answers. As a competitive mountain biker, I know my body and its limits, so I knew something was wrong when I started to get winded when I rode. People would say, “Maybe you’re just having an off day,” and doctors would recommend that I hydrate more. Eventually, I started telling myself nothing serious was going on. Maybe it was all in my head.
But as time went on, it wasn’t just biking that left me feeling winded. About four years later, taking the stairs started to feel challenging. I was concerned, so I decided to get a second opinion, and I’m thankful that I did. My new physician ordered an ultrasound of my heart, and she did it just in time. She found that a major artery that controls the blood flow to the left side of my heart was 90 percent blocked. I had to have a stent placed to ensure regular blood flow. If I hadn’t had that ultrasound, I could have had a heart attack and died.
My doctors were confused. I was confused. They kept saying, “You’re in your 30s, and you’re in such good shape. This doesn’t make sense.” Eventually, they diagnosed me with coronary artery disease. Of course, years later I learned that wasn’t the case at all.
About seven years later, while hospitalized with another blood clot, a doctor familiar with rare cancers recommended that I be tested for a JAK2 mutation, which is often associated with a group of rare blood cancers called myeloproliferative neoplasms (MPNs). The results confirmed that I had PV, a chronic blood cancer, and the most common type of MPN.
Living with cancer
It was a relief to finally understand what was wrong with me, and that the symptoms that had plagued me for years weren’t all in my head. But hearing you have cancer isn’t something anyone is prepared for, and it took its toll on me, not only physically but mentally and emotionally as well.
It wasn’t all bad, though. Some happy news came after I’d been living with PV for about four years: My husband and I were pregnant. We were absolutely overjoyed, especially since my doctors had warned me that it might be difficult for me to have a child. But becoming a mother while living with cancer presents a unique set of challenges. The natural fatigue of motherhood, along with PV-related fatigue, was an intense daily struggle, and there were times where the exhaustion was so intense that I needed emergency naps just to get through the day.
A lot of people have trouble understanding what patients with PV experience because to the outside observer, we often look perfectly healthy, even as we struggle to cope with the physical and emotional toll of the disease.
Polycythemia vera has taught me invaluable lessons
Having PV has given me a new perspective on life. I’m even more aware now of how important it is to take care of myself, keep track of my blood counts and symptoms, and ensure that I have a strong team of doctors and loved ones to support me. I want to be as able-bodied as I can be for as long as I can to help me live a happy and full life for myself and my child.
When I was first diagnosed, I felt very alone. Most doctors weren’t familiar with my condition, though that’s no longer the case for people starting this journey now. But even with all the new knowledge available, much of making the best out of living with PV is up to you as an individual. Here’s what I would tell people with my condition:
Learn to ask for help.
Because of my illness, there are certain things I can’t handle by myself, and that’s discouraging. Asking others for help has been hard. But over time, I’ve learned to be less self-conscious about what other people may think if I don’t look sick, but I still need assistance.
Educate others about your condition.
Educating the people who support you is so important. I tell everyone about my PV, even my dentist and gynecologist, so that they can give me the most appropriate care. However, not all doctors know much about PV—so I’ve become intimately familiar with my medical history and disease so I can communicate and advocate for what I need.
I also do my best to teach my family, including my son, about PV. When my son was young, I kept things simple. I explained that I needed to get a needle in my arm to take some blood out and that I’d be sleepy for a while and wouldn’t have the energy to play.
Over time, he has started asking more questions, so I’ve explained that my bones make too much blood, and it’s much thicker than his, like pancake syrup, which makes my body work harder than his body, and slows me down. He is more empathetic than I am with myself sometimes, and he’s a vital part of my support network. Which brings us to...
Build a support network.
If you’ve just found out you have PV, make sure you have a team of people who really know you—caregivers, friends, family, doctors, and therapists. It may also help to find a local support group specifically for people living with blood cancer.
It’s also important to find and keep people in your life that will help you when you’re not feeling great, because those times will come. The new relationships you’ll make and the ones you currently have will lift you up and help you enjoy your life.
Appreciate the little things.
PV gave me an appreciation for all of life and the ability to share the beauty of everyday things with my family. Small, special moments, like getting hugs, are the moments that matter the most to me now. Discover what those moments are for you. Slow down, don’t take one moment for granted, and always make time to laugh.
Know that happiness is possible.
I have so much sympathy for people just starting this journey. Many people associate cancer with dying. When I was first diagnosed with PV, I thought, “This isn’t something I can live with.” But I have learned that I can live with this. No matter what people say, I can still live a happy life.
To learn more about PV and other rare blood cancers, check out Voices Of MPN.
©2020, Incyte Corporation. All trademarks are the property of their respective owners. MAT-HEM-01650 06/20
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