Essential Thrombocythemia (ET)


    “I am still determined to live my best life and find joy in every moment.”

    Perseverance, Grace, and Laughter
    The story of Ruth and Ina

    *This story is a patient’s first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult your physician (preferably an MPN specialist) before making any therapy or lifestyle changes.

    In 2001 Ruth Gunson lost her husband, and Ina Gunson (seventeen-years-old at the time) lost her father. With their extended family in Germany, this mother and daughter have had to rely on one another over the years and have grown quite close as a result. Not surprisingly they share a special bond. They’re more like best friends than mother and daughter. However they’re defined though, there’s no denying their fierce love for one another. And now in the face of Ruth’s cancer diagnosis, Ina is with her mother every step of the way, because they’re in it together. No matter what.

    When Ruth was diagnosed with Essential Thrombocythemia in 2016, a lot changed, but what became more clear was that Ina was going to protect her mother through this journey. Ruth is very grateful for her daughter who she calls her trusted companion and says, “Ina notices if there are any changes to my health. She accompanies me to my doctor appointments, which is very helpful to have another person present that is so supportive. Sometimes she notices rather important information that passes me by when I am not feeling my best. Ina helps alleviate my anxieties and worries. We share a lot of laughs and enjoy each other’s company.”

    Before Ruth was diagnosed with ET, she was very fatigued, losing her balance, and had difficulty collecting her thoughts and sleeping. She was referred to a cardiologist and an EKG, ECHO cardiogram, and ultrasound of the carotid arteries were completed. Nothing abnormal was found. Because she had a perpetually high platelet count a bone marrow biopsy was finally ordered when it was confirmed she had ET and the JAK2 mutation. Ruth still has some balance issues and tires easily but since receiving treatment is able to drive short distances again and is working on building up her strength through light exercises, and also doesn’t rely on a cane any longer. She is grateful she can still enjoy her favorite hobbies: reading, painting, gardening knitting, and being in nature. And says, “I am still determined to live my best life and find joy in every moment.”

    As grateful as Ruth is for her daughter, Ina is equally inspired by her mother. Ina says over the past year and a half her mother has taught her to slow down and enjoy the little moments. “Ruth is such a strong woman, she doesn’t let the worries and fear run her life. She rarely complains. She focuses on the things that make her happy while having a great sense of humor. She has a great laugh and is still one tough cookie. She has taught me to enjoy every single moment and to make the best of each day…I believe Ruth’s attitude is a combination of perseverance & grace. No matter what, she has taught me to always make the best of every situation.”

    Ruth has some wise advice for other MPN patients too. She recommends finding a hematologist/oncologist who is a good listener and also asking how many MPN patients they have treated in the past and are currently treating. While she suggests doing your own research, she warns about getting hooked on it. “Everyone has their own experience along this journey. Don’t fall into a deep hole of depression seeing no end of this condition. You can adjust and shift your focus and live well despite the setbacks that can occur.”

    She says. When asked about what she hopes for the future of MPN treatment and patients, Ina says, “There is so much hope I have in my heart. I hope more people come forward to share their stories so we can come together and ensure that no one feels alone on this path. I hope by spreading awareness more funding is generated so rare blood cancers can receive more funding and a larger budget that is deserved. I hope more people are open to participating in clinical trials which will open up the platform for more research and studies. I hope by sharing my story, other caregivers feel less isolated. You don’t know what someone is going through until you have a conversation. I hope others have just as much hope in their hearts as I do.”

    And Ruth says after discovering the foundation, “We were both incredibly grateful. It was a sense of relief to connect with others who are also impacted by MPNs on a national and worldwide level. The foundation takes significant action to bring awareness and gives every MPN patient a voice. We can inspire and lift one another up in many ways.”

    These two take downtime seriously too and remind us life is meant to be fun, no matter your circumstances. Ruth and Ina relax by listening to live jazz, seeing comedy shows, taking yoga workshops together, spending time in nearby parks, or simply staying home and cooking a meal, and perhaps most importantly they laugh. A lot. As Ina says, “We laugh a lot and crack a lot of jokes. Like laugh so hard your belly hurts level of laughing. Healing laughter.” Sound advice for all MPN patients and caregivers; laugh more and heal. 19th-century British poet Lord Byron understood the sanative effect of laughter as well when he wrote, “Always laugh when you can. It is cheap medicine.”

    Contributed by Jennifer Acker

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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