After attending a New York Jets game in 2019, Jim O’Brien, then 24, noticed his knee was swollen. Then he had a fever and the chills. After visiting his doctor he received a stunning diagnosis: leukemia.
“I thought I was getting the flu with no congestion,” O’Brien, 26, told TODAY. “For me it was (what do I need to do) from the get-go trying to make sure that I’m controlling whatever I can control and leaving the rest to the doctors.”
O’Brien’s sharing his story to encourage other people to feel empowered to make medical choices that feel right for them.
“Run your own race and just do what’s best for you because it’s really hard being a cancer patient,” he said. “Make your own decisions, make sure they’re informed. … Every decision that I made along the way was what was best for me.”
Swollen knee leads to surprising diagnosis
When O'Brien's knee initially started to swell, he chalked it up to being on his feet a lot the day before.
“I thought, ‘That’s weird,’ and I tried to stay off of it. Then a couple days later, my other knee started swelling up,” he said. “Then I started feeling fevers and chills."
He visited his doctor who performed bloodwork. O’Brien thought he had the flu so he was shocked when the doctor called him back in and said it was leukemia and O’Brien needed to follow-up with the emergency room or see a hematologist. O’Brien walked to the nearest hospital.
“My first words weren’t like, ‘I have cancer boo hoo,'" he remembered. "It was more like ‘What do I need to do? Where do I need to go? Who do I need to talk to? What do I need to have done?’”
After a bone marrow biopsy, O’Brien learned that he had acute lymphocytic leukemia, a type of cancer often found younger people.
“It’s mostly in children so between childbirth and the age of 16 to 20. Then it becomes less common, but it’s still a disease we see in adults,” Dr. Hagop Kantarjian, professor and chair of the department of leukemia at M.D. Anderson Cancer Center in Houston, Texas, and one of O’Brien’s doctors, told TODAY. “The fact that he is between 20 and 30 is not uncommon for acute lymphocytic leukemia.”
By Oct. 1, 2019, O’Brien started chemotherapy. His leukemia needed to be in remission so he could undergo a bone marrow transplant, which he needed because he was at “an extremely high risk” for his cancer to reoccur. In February 2020, he received the bone marrow transplant. Soon after, COVID-19 started surging in New York City and he worried.
“I was extremely scared,” he said. “When you go through a bone marrow transplant you are very immunocompromised and if I got COVID it would not bode well for me.”
While treatment went well, it was tough for O’Brien to pause his life. Before his diagnosis, he was working in his dream career as an accountant living in Manhattan.
“I had a lot going for me. It was going really well with my job. My career was really taking off. I had an apartment with my best friend,” he said. “It was painful.”
After his transplant, he tried returning to his life.
“What I’ve had to do in the past two years, after the rug gets pulled out from underneath you, is you want to pick up the pieces as soon as you can,” he said.
Then in November 2020, O’Brien received bad news — his cancer had relapsed.
“I went into the doctor for some routine bloodwork. My counts were low. He was suspicious. He biopsied me and confirmed the worst,” he said. “That put me into phase two of my cancer journey.”
He then reached out to doctors at M.D. Anderson Cancer Center in Texas who reviewed his case and came up with a new treatment plan. In March 2021 he moved to Houston to undergo four more rounds of chemotherapy.
“It was tolerable chemo,” O’Brien said. “I felt genuinely like myself pretty much the entire time so thankfully the treatment wasn’t rough on my body. But then you get a bone marrow transplant and it’s a whole other ballgame.”
While a bone marrow transplant comes with some pain, O’Brien's doctor assured him it was the “best course of action.” Prior to the transplant, Kantarjian used a new technology that “can detect one leukemia cell in a million cells and he was negative for that.” With O’Brien showing no signs of disease it was the perfect time for him to receive the bone marrow.
“We proceeded with the transplant,” Kantarjian said. “His chance of a cure is much better … we gave him more innovative treatments for a longer period of time before the transplant.”
O’Brien will need to stay in Houston for 100 days after his transplant to be monitored. He’s already on day 72.
“We monitor people closely with blood tests, two to three times a week, and then bone marrow and other X-rays as needed,” Kantarjian said. “Beyond 100 days … they can go home but then we have to see them once every three months.”
But the outlook seems positive.
“I think he’s going to do very well,” Kantarjian said.
O’Brien is a huge fan of the New York Islanders and wrote the team a letter about how their “persistence” during the 2020 NHL playoffs kept him motivated on bad days and brought him joy on good days. They sent him swag, including a personalized jersey.
“They made a big impact on me. I’m just one person, but one person who is just kind of going through it,” he said.
Connecting with other people on social media with cancer and hearing about their experiences has also made things a little easier for O’Brien.
“I’m a very inquisitive person so talking to people usually helps me out a lot — especially talking to people who have been through what I have been through, a double transplant recipient,” he said.
O'Brien is still grappling with survivorship. He hopes his story helps others realize they’re not alone.
“With every cancer patient survivorship can sometimes be worse than the treatment,” he said. “What I’m nervous about is just how differently am I going to be treated. … You just want to be treated normally.”
This story first appeared on TODAY.com. More from TODAY: