Introduction

Hi, I’m Neal. I’m 35, a father of four daughters. My partner and caregiver, Kayla, has been with me for the past seven years. 

I’m the life of the party, and I’m always very animated. I’m a unique person — I’m authentically myself, and I wouldn’t change for anyone. And most people who know me would say the same thing.

I ended up with an infected elbow and cellulitis from my fingers to my arm, which almost had to be amputated.

I also told them I had fatigue, and they didn’t think I did, but then I was blacking out.

My platelet and blood volume levels were also quite high, with platelet counts in the 900s, a hematocrit of over 51%, and elevated hemoglobin and white blood cell counts. The numbers continued to rise.

My spleen was enlarged, too, but they didn’t think it was anything to be worried about. But it would give me bad acid reflux because it was pushing on my stomach, and I would end up in the ER with quadrant pain. They would give me medicine to treat the symptoms, but not the underlying issue.

How My Diagnosis Made Me Feel

Being diagnosed after having felt unheard by the medical community for so many years was an eye-opener. That had repercussions for my work, too.

Seeing doctors repeatedly can raise flags. When you do that and the medical system doesn’t believe you, especially with myeloproliferative neoplasms (MPNs), which can be almost invisible, your employer isn’t inclined to believe you either. So mentally, it was just super defeating.

On top of all the physical symptoms I had been experiencing, constantly being misunderstood by the people I was seeking help from made me very anxious. I would think, “Why can’t somebody understand me?”

But my kids helped me keep going. I knew I had to provide for them. So no matter how many phone calls I had to make or how many hours I had to spend on hold with the state, I managed. 

My ET Progressed to Prefibrotic Myelofibrosis

I had a good year or so after my diagnosis with ET. And then all of a sudden, things started getting worse again.

I felt like my body was just working too hard, and I was in pain again. I also felt bone-tired — too fatigued to have just ET.

My pain was mostly focused on my hands and feet, although I did also experience some pain in my long bones — my shins, thighs, and forearms. I felt like I had pressure on my hands from the inside of my bones, pushing outwards.

The only way to describe it is pressurized pain.

The pain incapacitated me. It just dominated everything, including my thoughts. It made me sick enough to vomit, and I couldn’t eat. Thankfully, I’m now on pain management, which helps reduce the pain enough for me to be able to eat. 

This pain prompted my doctor to undertake three bone marrow biopsies. Each one showed progressively worse fibrosis. The last one, which was done in February 2025, showed grade one prefibrotic myelofibrosis.

How I Track My Symptoms

I’ve kept myself in the know about my bloodwork and everything like that. Because of this, my doctor can talk to me in a way that makes it less concerning for me.

She tells me about trends and how my bloodwork can get worse, how my white count would go higher, how we would be seeing lower drops in my hemoglobin or hematocrit, or if we would be seeing peripheral blasts — refers to immature white blood cells (blasts) that show up in the bloodstream when the bone marrow isn’t working right — in the bloodwork.

“Until that point,” she says, “Don’t freak out. You’re gonna be okay. Just keep your head above water.”

She’s always been positive. She knows my youngest daughter, and we’ve always sent her pictures, or she meets her at some appointment, She’s really personable—everything you’d want in a rare cancer specialist.

What I’d Like People to Know

If your bloodwork is a bit off — if something’s high or low — if you’re feeling tired, if you’re losing weight, you need to have a doctor check you out. 

And if the doctor you see shrugs it off or says, “Well, this doesn’t make any sense,” find a new doctor who listens to you.

Don’t be afraid to fire your doctor and find someone else who can give you a second opinion. I’ve seen second, third, and fourth opinions save the lives of patients with this disease. 

Explore the resources available to you — they’re out there, even if you don’t live in a big city. Don’t be afraid to get help. You don’t have to fight this alone.

There’s a great community of MPN groups out there that support patients and guide them through this illness.