One year ago today my doctor called me in the afternoon.
I was in bed. He cleared his throat a couple times and then he told me the reason I’d been feeling weak, seeing weird blindingly bright spots in my vision, and had a fever that wouldn’t go away was because my blood was full of ineffective, malformed white blood cells.
I had AML leukemia. If I did nothing, I’d die in a few weeks.
A few hours later, I had a flight to the East Coast booked for early the next morning. I spent the night in a San Francisco hospital getting blood transfusions and antibiotics to allow me to fly.
I landed in NYC, my parents picked me up, and we drove to Yale’s Smilow Cancer Hospital. When they started pumping cell-killing poison into my bloodstream, the hospital became my home and my prison for the next few months.
I cried. I felt sorry for myself. I didn’t believe it was true.
Friends banded together and started drives across the country, then across the globe. I did interview after interview. Newspapers, TV, and radio helped spread the word. Facebook, twitter, and tumblr got people to drives. I couldn’t leave the hospital, and sometimes I was throwing up too much or too weak to talk. We kept going.
We organized online, and my prison became our stem cell drive campaign headquarters.
Friends donated time, money, connections. Strangers sent mail, hundreds of photos, and organized drives. Celebrities made videos. Tens of thousands registered to be stem cell donors. (Matches for others in need continue to come out of those drives.)
The nurses and doctors continued to pump poison into my blood, eliminating cancerous cells and healthy cells alike. They hoped to hold the leukemia at bay until a donor could be found.
A few months later, we found a donor! Friends and strangers had banded together to save my life.
I had my transplant in late January. And then began the year-long recovery process I’m currently in:
15-20 pills a day, on-and-off steroids to combat Graft vs Host Disease, nausea, weakness, muscle atrophy, scopes down my throat, probes up my nose until they hit my throat. Weekly, then bi-monthly blood tests, immunosuppressants - which keep my immune system from attacking my organs, but also make me susceptible to disease. Needles, needles, needles, so many needles, fevers, infections, severe mucositis, so much pain they gave me a button to press to give myself morphine whenever I wanted, anti-nausea drugs that resulted in weeks of lost memories, blood clots, followed by months of blood thinners, teeth issues, corneal damage, a slate of other issues a little too graphic to write about, crazy painful out-of-nowhere hand and leg cramps…
…all bumps along the road.
My counts are up. There’s no sign of recurrence yet. If I’m lucky, there never will be. I feel more normal with each passing week.
I was able to leave the hospital, and then able to leave my parents’ home.
I got to spend the summer in NYC, reconnecting with old friends, and returning to work at Photojojo part-time. I just saw my brother get married, saw a live volcano in Hawaii, saw the sun set above the clouds and the clearest night sky in the world. I visited Portland for the first time, and spent a week in SF working and seeing friends. Now we’re planning a road trip to move back West. We leave in a few weeks… on motorcycles.
A year ago I was on a plane from SF to CT because I was dying.
Today I’m on a plane from SF to CT, and I feel more alive than I have in a very long time.
Photo @ Twin Peaks last week in SF. (You can see photos of our adventures by following @superamit on Instagram!)
