Turning to the power of fact-based hope when things are out of our control

The thing about myelofibrosis (MF) is that it is different for everyone. Yes, I know, you’ve read this before. But let’s dig deeper.

I know people who have had virtually no symptoms for two decades. I also know people who are transfusion dependent and have to schedule much of their lives from doctor appointment to clinic appointment to in-person and virtual follow-ups. Repeat.

I know people who have walked away from successful careers, from entrepreneurial endeavors worth millions, from day-to-day pleasures, family connections, or even life-sustaining necessities — all because they were too fatigued or in too much discomfort to function as their previous selves.

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I know people who have had stem cell transplants that gave them back a completely normal life. I know others who had transplants that failed or were technically successful, but symptoms or complications remained that left them managing perpetual treatments — again.

I also know people who are waiting. People are waiting for a potentially successful donor match — especially those in minority groups or from ethnic backgrounds that don’t encourage organ or bone marrow donation, where fears or apprehensions and lack of trust dominate the experience of healthcare.

So where does this leave us?

What I believe

Some people cling to their faith. Others believe in fate. Still others are confident that the science will catch up to their disease, offering better outcomes in their lifetime.

What do I believe? As a science writer and someone living with progressive myeloproliferative neoplasms (MPNs) for decades, now myelofibrosis, I believe in the power of fact-based hope. But actually, it’s a question I don’t spend a lot of time thinking about.

This may sound a bit unrealistic since I spend so many waking hours writing about blood cancers, and specifically MPNs. But it’s true.

One thing I learned — early on and through each life-threatening MPN-related crisis — is how much is actually out of my control.

I can advocate for myself as it relates to treatment choices; I can question decisions until I fully understand or reject them; I can embrace my care team’s expertise with the knowledge that they have my best interests at heart and will always explain their reasoning for the choices they recommend. Yet, much is still out of my control.

I never take for granted — not one day — that I am among the very fortunate. I have responded extraordinarily well to a clinical trial therapy for more than six years. I also don’t underestimate — not a single day — that these same drugs could stop working tomorrow, or next month, or next year.

I walked more than 5 miles today. On the weekend, I kayaked with a friend past dozens of sun-worshipping turtles and a beaver’s dam on a perfectly peaceful creek, a total of two-and-a-half hours on the ripple-free water. Last week, I cycled 10 miles along the beautiful Connecticut coastline, without having to stop to walk up even one hill!

I realize this is spectacular. I recognize it is not the MF norm. I embrace it. I appreciate it. I live for it.

Most importantly, I share it. Not to minimize the day-to-day difficulty experienced by so many in my shoes. No. I share my good fortune and my appreciation so it might give others true hope.

New and potentially better treatments are in the pipeline. If one doesn’t work for you or a loved one affected by MF, the next one might.

If you can’t remember the last time you could walk around the block without stopping to rest, maybe it’s helpful to remember that five years ago, neither could I.

If you find yourself giving into the notion that you’ll continue to miss out on important family and friend gatherings, I hope it gives you encouragement that I missed my twin grandsons’ second birthday party because I couldn’t get out of my recliner that day. Then, last month, I had the privilege of giving away that chair — the one that I had slept in for four months straight.

Will everything be easier again? Will you gain back lost strength? Will treatments work better or longer for you? None of us knows our future. But hope is a miraculous medicine. I am inspired to think you might take what I can give.

And please let me know how you’re doing, because I’ll be right here.

Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.