Volunteer draws from past to comfort patients
Jake Ziemba, like many volunteers at VCU Massey Cancer Center, has a personal tie to illness. His story is one of waiting and fighting, trial and error and experimentation, which is not unlike the story of many of the patients he visits in Massey’s Bone Marrow Transplant program.
Jake began volunteering at Massey in January of 2016. His role as a volunteer was to make sure that the bone marrow/stem cell transplant patients are comfortable and offer to bring them blankets and any snacks or food, but Jake used his time in the room with patients to feel out if they’d like to have a conversation. If they seemed interested, Jake used his story to relate and provide emotional comfort.
Jake became very ill when he was 17 years old, and for two years he went undiagnosed. He was eventually approached by a doctor who had done his dissertation on a blood condition called paroxysmal nocturnal heboglobinuria (PNH), and he subsequently diagnosed Jake with this condition. At the time of his diagnosis, the doctors told him that the life expectancy after one begins showing symptoms is between six and eight years, but Jake remained positive.
“I had been sick for so long with no answers that I was actually happy when I was diagnosed,” said Jake.
The drug Jake needed to treat his illness, which at the time was his only treatment option, was still in the clinical testing stages, meaning that he needed to wait until the drug was available in order for him to take it. Jake found himself waiting longer and longer, until he reached the point where he had to tell the pharma company providing the drug, “I don’t think I’m going to be alive in another three months.”
About six months after his diagnosis another treatment option arose. The option was a stem cell transplant, and it had the potential to cure him of the disease instead of just treating it. Thankfully, his brother was a match and Jake moved forward. He’s been PNH free for the last 10 years. Jake’s case proved to the medical community that stem cell transplants were curing patients with this disease.
Jake says he related to the patients at Massey in a unique way because he “[knows] what it’s like to be a very sick person, to be stationed in a hospital, but also what it’s like to have a life outside of that and how difficult it can be to transition out of those states of being.”
“Having someone else that they can kind of compare notes with helps a lot. I tell them it’s very important to be patient. I remind them that everyone's experience is so different. There's no way to plan for what will happen to you. Take good care of your body, your mental health, and be sure to have good people around,” adds Jake.
Jake recently took a break from volunteering at Massey to teach English at a middle school in South Korea. “I can’t wait to pick up where I left off at Massey when I return,” he says.
Written by Savannah Smith, communications intern at VCU Massey Cancer Center.