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A Young Adult Finds Friendship After an MPN Diagnosis

A Young Adult Finds Friendship After an MPN Diagnosis
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Published on July 16, 2021

Finding Friendship After a Myeloproliferative Neoplasm Diagnosis

I can remember a million questions flooding to the forefront of my mind after I received my myeloproliferative neoplasm (MPN) diagnosis in February 2020: Can I still lead a normal life? What will the treatment look like? Most importantly, I wondered: What exactly is a myeloproliferative neoplasm, anyhow? I was struggling to understand what I was being diagnosed with in the first place.

Nothing quite prepares you for hearing the sentence “you have blood cancer” — particularly at 30 years young. The one question that didn’t cross my mind at the time was: How will this diagnosis affect my life positively? I know it might sound counterintuitive to attempt to frame a cancer diagnosis in a positive light. Yet, one year into my diagnosis, I find myself counting my blessings, especially the people this disease has brought into my life.

My MPN diagnosis came years after I first showed symptoms, including debilitating headaches and a persistent cloud of brain fog. MPNs are a group of rare, chronic blood cancers that originate in the bone marrow. This spectrum encompasses multiple diseases, including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Classically, these diseases are characterized by the overproduction of various blood cells. Yet despite an extensive paper trail of labs showing elevated hematocrit levels — indicating an unusually high proportion of red blood cells in my blood — and elevated platelets, I went undiagnosed for at least seven years.

When I share my story, this is the part that most people struggle to understand: Why did the disease go unnoticed for so long? Of course, I had mentioned my concerns to doctors over the years, but each time I was assured that my vague symptoms could be attributed to a multitude of different things. My high blood levels — the concrete evidence — were noted as being slightly strange but not elevated enough to suggest a genuine concern. Time and time again, I was given a clean bill of health and sent on my way. This pattern was broken when I met with a new hematologist. Within five minutes of our very first appointment, the doctor confidently informed me that she suspected an MPN was the culprit. Although I was slightly relieved to finally have a reason for why I was constantly feeling subpar, I was exceedingly concerned about what this diagnosis would mean for myself, my family, and my future.

While MPNs are rare in general, they are rarer still in young patients. The median age at diagnosis for an MPN is somewhere between the ages of 60 and 70. But little did I know that another young woman was finding herself in a similar situation just miles away. She, too, was a young adult attempting to navigate the intricacies associated with being diagnosed with an MPN at an unusually early age.

Pam and Lea

Pam and Lea

Lea received her diagnosis just a year before me. In December 2018, she was rushed to the emergency room after a severe allergic reaction. It was there that doctors began digging deeper into her severely abnormal blood results. Eventually, she was referred to hematology and diagnosed with an MPN. She recalls being shocked at the time but acknowledges that the symptoms were evident for years before her diagnosis. Echoing my own experience, she had also been dismissed by doctors when mentioning her symptoms: headache, fatigue, and unexplainably itchy skin. She quickly learned this itchiness had a technical name — pruritus — and is a symptom largely characteristic of PV.

Both Lea and I sought to deal with our diagnosis in the same way, by learning as much as possible and seeking out other patients. Being millennials, we instinctually turned to (Dr.) Google and social media. Thanks to the magic of the internet, we located and joined a fantastic local disease-specific group, appropriately titled “MPN Warriors.” Jean, the group leader, was a fellow MPN patient herself. After struggling to find information about MPNs following her own diagnosis, Jean vowed to create a space where newly diagnosed patients could come to educate themselves and seek support, and Lea and I did just that. However, as I attended my first meeting, Lea sat in the hospital fighting for her life recovering from emergency surgery to remove an MPN-induced portal vein clot. She and I wouldn’t meet in person until months later.

Six months into my diagnosis, my hematologist-oncologist suggested a significant and unexpected shift in my treatment plan. At what I’d thought would be a routine appointment, he suggested that I consider starting a cytoreductive agent to help control my unpredictable blood levels. Cytoreductive agents are a class of medications often used in MPN patients to lower their blood counts. I was immediately thrown into a cold-sweat panic. His decision, while perfectly logical, seemed sudden. Just months prior, I had been considered low-risk. And while I always knew cytoreductive therapy was an option on the table, I had assumed that I would be able to continue with my minimalistic treatment plan for some time before needing it. My age presented an extra layer of concern. As a young woman, I wondered whether this choice might impact my ability to have a family in the future and what, if anything, I could do to mitigate potential risks.

My head was spinning, and I wasn’t sure how to make it stop... Until Jean kindly asked if she could pass on my information to Lea. She thought it might help me to chat with another young MPN patient. Not knowing what else to do, I agreed. Not even an hour later, Lea was reaching out via phone.

That first phone call went on for hours longer than I expected it to. Lea was so understanding and patient as I sat there practically word-vomiting my fears onto a complete stranger. After calming my nerves, she graciously shared her MPN journey with me, and the similarities we found were eerie. Both of us had endured similar symptoms and challenges for years before diagnosis.

Today, I am so thankful for the friendships that my MPN has brought into my life. Lea and I have developed a unique support system, acting as each other’s designated MPN buddies. We often field each other’s phone calls when the weight of being a young adult with MPN gets to be too much for one person to bear. We see the same doctors, know each other’s treatment schedules, and always check in with one another for updates. There aren’t many days that go by without us swapping memes — medical and nonmedical — to brighten each other’s day. We lean on each other for advice when discussing changes in our treatment plans, and quickly forward test results to one another after they come in so the other can provide a careful second set of eyes. Having a friend like Lea has become as integral to my treatment plan as my network of carefully selected doctors. As cliche as it sounds, in our case, two heads are always better than one.

While MPN remains a huge part of our friendship, that isn’t all of it. Once in a while, we even remember to be “normal” 30-somethings together. Some weekends we can be found grabbing a quick lunch or a cocktail, or just enjoying the afternoon sunshine, thrilled to be living, grateful to be laughing, and (weirdly) thankful for the rare circumstances that brought us together.

~Pamela Sachs

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