Terminal Velocity: Hope in a Free Fall

Birthdays, I’ve always believed, are worth celebrating. They remind us we are alive, and to take stock of our one precious life.

I fought hard for this particular birthday: three surgeries, 22 doses of chemotherapy, 34 days in hospital intensive care, and one bone marrow transplant. Altogether, these experiences culminated into the best birthday gift I have ever received … a brand new immune system.

For over 10 years I had been managing a debilitating autoimmune disease, Hypertrophic CIDP, a rare, progressive, neurodegenerative disorder. Similar to Multiple Sclerosis, CIDP occurs when a person’s immune system betrays her own body, attacking and killing critical nerve function. By mid-2019 I had lost 80% of the function in my arms, legs, voice, and eyes. I was mentally preparing for a future where I’d be immobile, mute, and blind. 

This illness had started slowly and stealthily but now its rapid progression was alarming. I couldn’t help but think about terminal velocity, which the Oxford Dictionary defines as “the constant speed that a freely falling object eventually reaches when the resistance of the medium through which it is falling prevents further acceleration.”

I had tried and failed to respond to all other treatments over the years. CIDP has long been deemed an incurable disease, but I’d hoped some or all of these treatments would slow the progression, creating a parachute of sorts. But gravity’s pull was stronger. So in 2019 I found myself in a free fall, wondering if I had in fact entered the final phase of my illness.

As helpless as one feels in a free fall, this is what I learned: there is always something out there to hang your hopes on. In fact, if my situation hadn’t been so dire, I may not have actively researched my options, enlisted the help of my friends in the medical community, or even explored unconventional trials and treatments overseas. It is in our darkest moments that we find the fire within us to light the way forward.

In December 2019, a miracle happened … months of research, advocacy, and appeals to different research institutions paid off. I was one of 40 critical cases approved to participate in a hematopoietic stem cell transplant (HSCT) clinical trial headed by Fred Hutchinson. This was my hope realized, and my last chance to stop the rapid progression of my illness.

HSCT – also referred to as a bone marrow transplant (BMT) – was pioneered right here in Seattle at Fred Hutchinson by Dr. E. Donnall Thomas, who was awarded the Nobel Prize in Physiology in 1990 for his work. It is commonly reserved for advanced leukemia or multiple myeloma patients, but just in the last two decades, more and more evidence has emerged that this same treatment can slow – maybe even reverse – severe autoimmune disease. By wiping out their existing bone marrow, and replacing it with new, healthy stem cells, BMT “resets” patients’ immune systems. The hope is that the new immune system won’t go rogue as the old one did.

Only a handful of CIDP patients worldwide have received this particular HSCT protocol. There is so much that is still unknown about CIDP, and even less about how the disease responds to a bone marrow transplant, but I was thrilled to have the opportunity to find out and participate in the cutting edge of science. 

By late February 2020, however, we received some sobering news: the trial was paused due to uncertainty around the coronavirus. Not only did Covid-19 pose a risk to immunocompromised BMT patients, but by the spring hospital systems all over the country were mandated to reserve ⅔ or more of their bed capacity for Covid-19 patients. Those of us non-Covid patients, managing life-threatening illnesses like cancer, and critically dependent on these hospital systems, were suddenly competing for the remaining beds. Our doctors had to submit patient rankings, and constantly fight for their most urgent cases. 

Week after week, I was told I had to wait. I kept a close eye on Covid-19 cases, the latest research regarding transmission, and tried to stay hopeful as surge after Covid-19 surge kept overwhelming our hospitals and postponing our trial start date. All of 2020 passed. As the pandemic persisted, that sensation of free falling returned. 

A few months into 2021, I heard that one fellow trial patient never made it off the waitlist; he died before he could claim a bed. I’ll never forget how I felt that day … though I had never met him, though I never even knew his name, survivorship cut deeply like a double-edged sword. 

I’d held on tightly to hope when I’d been approved for the trial, and now it was shrinking in my hands. But again I reminded myself that unless the trial shut down completely, there was something to hold onto. Week after week, that little sliver of hope got me through.

Finally, in December 2021 I got the call that a bed had opened up, and it was a bittersweet, emotional moment for my husband and me. Two years and we had almost given up hope, but now, the biggest gift had been granted to us. It was a risky, long, and arduous path before us, but I was being handed a second shot at life. We resolved to give this our best effort.

Now, months later, I proudly wear the badge of a #BMTSurvivor, and in this lifetime I’ll always advocate for others to have access to this treatment. I’ll be honored if I can be a source of hope to others who find themselves in a free fall. 

But this is not a badge that I have earned. I am here today as a result of the hard work and efforts of so many people who worked tirelessly to get me into the trial, to manage a complex series of treatments, and to ensure the best possible outcome despite multiple complications and detours. I’m forever indebted to the BMT nurses at UW Hospital, to the HSCT team of doctors and nurses at Fred Hutchinson / Seattle Cancer Care Alliance, to my husband and his sister who have provided me months of at-home caregiving, and to my dear circle of friends who provided constant support and encouragement on the hardest days. 

I want to thank the folks at TerraClear for the care, understanding, and flexibility they provided to my husband as he balanced formidable caregiving duties with a full-time job. I’m also deeply grateful to the Pacific Community Ventures and Decodis teams, for creatively crafting ways for me to contribute to projects I found exciting and fulfilling. I know it was not easy for our colleagues to adjust to last-minute schedule changes, or shifts in workflow to accommodate my physical limitations, but they did. 

The support we’ve received from these companies has reaffirmed for me the importance of creating flexible, inclusive, and accessible work environments. It requires intention and additional effort, but it invites contributions from those who may have left work altogether. That was certainly the case for a few fellow patients I met in the hospital … they had quit their jobs, as a BMT is a 12-18 month commitment with a lot of uncertainty and periodic hospitalizations. 

I think about all the talent that is sitting on the sidelines right now, whether patients receiving treatment or their caregivers. No one wants to be in 100% patient mode, getting poked and prodded every day. I’m convinced that mental stimulation, having an outlet to exercise one’s talents, is critical for any recovery. I am extremely privileged that my circumstances have afforded me this agency. And I’m excited to announce some new projects and professional endeavors in the coming weeks.

Will I regain the nerve function I lost over the past decade? I am not sure. My new immune system will take until March 2023 to fully engraft, and it may only be years after when we see improvements, if at all. That is not the question that matters to me. I don’t think too far into the future. There is so much joy and gratitude here in the present moment: the fact that I can freely breathe in and out, discover hope in unexpected places, and feel the tingle of a restless life force dancing inside for the first time in a long time. There is nothing else I’d rather feel, and nowhere else I’d rather be.