The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic playing out on TVs throughout the country. I realized that each of us in that waiting room had already been shaken to the core by our own private 9/11s and we were no longer surprised that terrible and unexpected things could happen. Watching those Twin Towers fall was a stark metaphor to me of the explosions that had happened in my own life that year and in the lives of those around me.
That was my first year of living with a bone marrow failure condition that is closely related to leukemia and just as deadly. My memories of 9/11 are inextricably wound with my own experience of a slow-moving terrorist attack on a micro level. The next six years of my life were like a continual replay of the towers falling, over and over and over. I survived on blood transfusions and panicked hope, along with a wretched determination to live as normal a life as possible, despite being at continuous high risk of spontaneous and fatal bleeding without platelets that could adequately clot blood.
"Let's roll." Todd Beamer's iconic words on Flight 93 struck me to my core, and remained my inspiration through the slow rolling explosions of life with an often fatal blood cancer over the coming years. I worked full-time - as a medical writer at M.D. Anderson, where I was treated - throughout the ordeal, and raised my grade-school age son as a single mom, keeping his world as normal as possible while I dodged mortar fire on the daily. Several years in, a bone marrow biopsy showed my condition had evolved from aplastic anemia into the highest-risk form of myelodysplastic syndrome (MDS); the stark truth was that I now had a three- to six-month life expectancy.
Life really slows down and hyper focuses you at a time like that. I completely understood the relative calm and resolve of Todd Beamer and the other everyday passengers who would within moments become national heroes. When terrorists have taken over the cockpit and you are more than likely to die, there's no room left for panic. You make a plan and walk into your destiny, whatever it may be. You just do the next thing and the best thing, and you live with it or die with it. Grief and panic is a luxury not afforded to those who stand at the precipice of life; at that point, those emotions don't even really make sense.
An Accidental Survivor
And yet, against all odds, here I am, 20+ years after 9/11, an accidental survivor recounting a story of a certain death that somehow passed me by. I received a new drug through a compassionate use exception shortly before it was approved by the FDA; it was kind of a “Hail Mary” move. Vidaza has been clinically shown to extend life for an average of nine months. I was only able to take it for four months because my blood counts tanked on it and didn't recover. My doctor said we'd wait a few months and revisit the options (options that didn't really exist, but OK.)
What happened next was a surreal, year-long, slow-rolling miracle. My blood counts began to creep back up, exceedingly slowly, but consistently up. The blood transfusions became a little less frequent. I remember being flooded with visceral joy and profound relief on the day my platelet count topped 20,000, a place it hadn't been in about 7 years. It was a far cry from a healthy level (over 200,000) but it contained tiny seeds of hope for a longer future, even if that future would be counted in months. That would be more months with my son, who by now had started high school. I started to dream of seeing him graduate and launch off to college. He was in 3rd grade when I first became ill, and all I wanted then was the unlikely possibility of seeing him through high school.
I'm honestly not even sure when I officially went into remission; it was a year or maybe two afterward. I know it was several years before my constant state of high alert subsided. I eventually unpacked my hospital "Go Bag" and looked around uncertainly. I was no longer expecting a hasty exit, but felt like a bit of an imposter in a world of healthy people blithely unaware that every bit of this life is so incredibly fragile, and therefore so incredibly precious.
I've been in remission for about 15 years now, and no one can really say why or how. Was it the Vidaza? Was it random chance? To date, experts maintain that MDS cannot be cured without a bone marrow transplant. Yet here I am, now in my 60s, and the years keep slipping by. I'm an accidental survivor with a lot more insight into life, but no explanation for my continued survival.
So Many Anniversaries
Each year, as I watch the news clips and videos from 9/11, I feel a little like the people who by happenstance made it down in the last elevator before the towers fell. They still seem a little dazed by their random, narrow escape. Grateful, but confused. I'm sure quite a few of those who were in the Leukemia Center waiting room on 9/11 are gone now, unsung victims of their own micro-level terrorist attack. For those of us who randomly survived, the possibility of a metaphorical 5th plane of terrorists heading toward us is a always a real possibility; like America itself, we'll never completely let our guard down again. It's only been in the last couple of years that I've begun to look toward the future as something that might actually belong to me.
9/11 is always a reminder to me and all of us that none of us knows on any bright sunny morning what that day might bring. Today, I am immensely grateful to have experienced so many more days than I ever expected, and I'm continually surprised and delighted that they keep coming. I
never expected to live to see my son graduate from high school. He is in his 30s now and he and his wife have identical twin boys who will be two years old in December. Twins! And I get to be here, on this wacky, imperfect, incredible planet, on this wild ride of life, to see my son and daughter-in-law succeed and my grandchildren grow. It feels like there's something divine in that. It's as surreal as 9/11 felt, but on the opposite end of the spectrum.
An accidentally wise friend of mine once said, "I always want to stay alive just a little bit longer to see what else will surprise me." Yes! Those are words I live by now. Life is amazing and unpredictable and sometimes awful and sometimes delightful. I'm here for all of it. I'm savoring the amazing parts, but, like the heroes of Flight 93, I'm now forever "ready to roll" if, or when, things go sideways.