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What have I achieved? Do I have any regrets? Am I okay if I die soon?
Andy Tao faced those questions when he learned he had a highly aggressive form of acute myeloid leukemia (AML) – and that if treatment didn’t work, his chances of survival would be nil.
What he discovered was reassuring. He will have only one regret: leaving his wife, Jean, and his family.
“Amazingly though, in my professional life I have achieved things I never dreamed I would have the opportunity to do – challenging and almost impossible things. And that gives me great peace, “They said.
Tao’s last professional challenge was perhaps his greatest achievement—chief engineer of the James Webb Space Telescope sunshield, a feat of engineering he explains in this NASA video. Since the telescope’s launch on Christmas Day 2021, it has been thrilling the world with the remarkable clarity of its space photographs.
On November 3, Tao and his wife flew to the nation’s capital to receive the NASA Exceptional Engineering Achievement Medal for their work on the sunshield.
Shortly after the ceremony, he sent this email to City of Hope oncologist Guido Marcucci, MD:
“Gene and I are in Washington, D.C. for the ceremony, which was held earlier today. The fact does not weigh on me that without your help, I would not be here today to accept the award. So, once Thanks again my gratitude knows no bounds.
Tao has been in remission for five years now, thanks to Markusi and a trial only available in the City of Hope, but getting there was the hardest he had ever done.
the toughest challenge of his life
Tao was known to face tough challenges. He worked on the Tracking and Data Relay Satellite and the Chandra X-ray Observatory – and even outside of his job, he loved pushing his limits.
An avid cyclist and photographer, he loved following pro cycling events like the Amgen Tour of California. In 2007, he became the official photographer for the Breakaway from Cancer Initiative, where he met with many cancer patients and survivors. He never thought he would be the one.
In late 2016, he began to tire more easily than usual – though that didn’t stop him from traveling to Tanzania to climb Mount Kilimanjaro with his wife and brother-in-law. But as spring and summer progressed, he grew progressively more fatigued.
Back home in Los Alamitos, California, he went in for blood tests, and when he didn’t hear back from his doctor, he assumed everything was fine.
Then while on a photo assignment in Colorado, he accidentally bit his tongue at dinner. His mouth filled with blood and it took a long time for the bleeding to stop. The next day, he tried going on a bike ride, but could barely pedal on flat ground. Only then did they realize that something was very wrong.
As soon as he returned home, he telephoned his doctor. Her blood test had gone awry and she needed to have it done again. Tao went to another doctor for tests.
“It was August 17, 2017 when the doctor called with the results, and I’ll never forget his words. He said, ‘You have leukemia. You need to go to the hospital now.'”
At this point in his story, Tao remained silent for a long time. We asked if he was alright.
“Just gut feeling,” he said. “Sometimes when I go deep into it, it hits me. I feel like I’m still dealing with a lot of trauma.
During the Amgen visits, however, she had made a good friend who was also a leader in the cancer support community. He told her to go to the City of Hope. A week later, he was moved from his local hospital to the main campus in Los Angeles.
all the odds were against him
From her first consultation with Marcucci, who was one of the contributors to the National Comprehensive Cancer Network treatment guidelines for AML, she knew she was in good hands.
“He was just the whole package. As a man and as a doctor, he was so confident. He’s extremely empathetic and really cares about his patients as people,” Tao said.
AML is a particularly aggressive disease and at the time, her blood was full of leukemia cells. His only hope would be a stem cell transplant, which would allow donor cells to rebuild his blood.
A genetic analysis at City of Hope made the situation even more dire.
“Dr. Marcucci came into my room, and I could tell by his demeanor that he wasn’t bringing good news. Tao paused, suffocating before he could move on.” And it’s one of the many things that Which I appreciate in him – he was completely honest with me.”
Genetic testing revealed that Tao had a RUNX1 mutation, which made her AML even more aggressive and harder to treat. A transplant can only be done after treatment, so standard-of-care treatment will start with chemotherapy.
His first round of chemo was a combination of cytarabine and idarubicin. it did not work. The leukemia cells still lurked in his bone marrow.
The next step was an even more intense form of chemotherapy, a high-dose cocktail of mitoxantrone, etoposide and cytarabine combined. That didn’t work either.
The only other possibility was to proceed with a trial, available only at City of Hope, for patients who were not in remission after initial treatment. It used a special type of radiation called TMLI, or total marrow and lymphoid irradiation, after a very strong chemotherapy combination of etoposide and cyclophosphamide, and then a hematopoietic stem cell transplant.
“It’s a very drastic treatment, and it was very long and difficult to overcome because of the side effects,” Marcucci said.
Jean was there for him throughout his difficult times and at a time when he didn’t know if he would ever get out of the hospital, it was a life-changing experience for him.
“I was sitting on a warm windowsill holding my wife’s hand,” he said, “and suddenly I realized what it really meant to live in the moment.”
‘Cancer is not a journey – it is an odyssey’
In addition to typical treatment side effects such as extreme fatigue and loss of appetite, the radiation created another problem that was almost intolerable to Tao. The skin on his hands and feet had thickened which was extremely painful. He could barely close his hand and could not even open a bottle. Then, the skin started peeling off. One of the nurses told him they looked like chicharrones: fried pork.
But the treatment worked. He had a transplant—his brother was the donor—and after three and a half months in the hospital, he was finally released. But the test was not over.
He began to suffer from graft-versus-host disease, a common effect of stem cell transplants. His appearance changed suddenly and radically. Her hair turned white, and she was diagnosed with vitiligo – a disease that causes white patches on your skin.
Instead of calling his experience a cancer journey, Tao views it as an odyssey: You don’t know where you’re going or what’s going to happen. You’re being attacked by adversity from all sides, and you don’t know if you’ll be able to survive.
Today, however, with his cancer in remission and the graft-versus-host disease under control, Tao says he is now living a good life. He grows orchids, works out with a trainer and a big goal is a bike ride next September. There is even an award from NASA to remind us of his significant contribution to our knowledge of the universe.
“Cancer tested me in ways I never imagined, but it showed me that I can find the strength and courage to go wherever the future takes me.”
For Marcucci, Tao’s odyssey was nothing short of heroic. “Andy’s courage should serve as an inspiration to other patients undergoing difficult treatment,” he said.
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