No matter what she did, Tori’s “pesky cough” in the summer of 2019 just wouldn’t go away. Then there was the itchy skin, drenching night sweats and the weight—about 30 pounds—she says was “just sliding off.” She chalked it up to her stressful new job and busy life. “I just didn’t really feel good,” she says. “I would get winded, and I’d have heart palpitations after going up one flight of stairs.”
Her primary physician was most concerned about the cough. He suggested doing a chest X-ray. “He called me back the same day,” Tori recalls, “and said, ‘Hey, there’s a mass in your chest, and we need to get you in for a biopsy immediately.’” The biopsy confirmed that Tori had stage IV Hodgkin lymphoma, meaning the cancer already had spread. She had to start chemotherapy right away.
“In my mind it still didn’t click that cancer could be part of my life, part of my story,” says Tori, 35.
After Tori’s successful treatment in New Jersey, she and her partner learned she was pregnant in the fall of 2020, and they decided to move to Atlanta. Tori’s parents had been living in Atlanta for almost 20 years. Her son was born in July 2021.
A Relapse Brings Tori to Winship
“About 10 weeks postpartum, I felt a lymph node in my neck swell up,” Tori says, “and I knew something was wrong immediately. I told my family, ‘I think the Hodgkin has come back, and I need to go and get treatment, get the biopsy and start this process.”
Tori’s oncologist back in Jersey City suggested she check out Winship Cancer Institute of Emory University. He told her that not only was Winship a premier facility in Georgia, but that it also was one of the best in the country. Tori booked an appointment with Kristie A. Blum, MD, co-director of Winship’s Lymphoma Program and professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine.
“I knew that I wanted to get care from a woman because of the impact, as a female, going through such intense treatment,” says Tori. “Secondly, I wanted to make sure that whoever was treating me was an expert in hematology, specifically for Hodgkin lymphoma.” Tori researched Blum’s credentials and was impressed by the great reviews she read from her patients.
From their first meeting, Tori says, “it was a really, really good experience.” She explains, “We talked about our families. She asked to see photos of my son, and we talked about her kids. And it just felt like I was less of a number and that she was really trying to speak to me individually.”
Still, Tori felt overwhelmed and guilty. She started treatment when her son was three or four months old, and she didn’t have the energy to play with him or to be a parent in the way she wanted to be. There were days she didn’t want to get out of bed. “So for me,” she says, “it was trying to find the strength in the midst of a very traumatic life experience, to show up every day and try to be the best mom I could be—but also make sure that I was taking care of myself so that I could be the best person that I could be.”
Stem Cell Transplant
The primary treatment for relapsed Hodgkin lymphoma is an autologous stem cell transplant. In this procedure, a person’s stem cells are extracted and later re-infused into their body, so they are able to regenerate healthy cells. After a five- or six-month- long chemotherapy “conditioning treatment” to prepare the body for the transplant, the stem cells are put back into the body. This is nicknamed your “birthday” because your original immune system is essentially eliminated and replaced by the stem cells that will reconstruct a “new” immune system.
After being in the hospital for the transplant, Tori says “the real recovery” is after you return home “because, although you’re technically discharged, you’re getting the effects of the treatment.” While the treatment side effects in the hospital can include nausea, mouth sores, headache, insomnia and restlessness, once you’re home, she says there are delayed effects. Your hair starts falling out, you feel weak and may have neuropathy (nerve pain). “You’re pretty much regaining and rebuilding your strength,” says Tori, “after having been hit with such high-dose drugs, which pretty much wiped you out, and now you’re starting over from scratch.”
Because your new immune system is still relatively compromised, Tori says “you have to be really, really safe around sick people, around kids, around the elderly.” She had to get all her childhood vaccines all over again—including hepatitis and meningitis vaccines. “I would joke that my son has more immunity than I do, and he’s one and a half,” she says.
Another Scare
After her second round of vaccinations, Tori started feeling a tingling in her fingertips. Her left arm began to feel weak and then a little paralyzed, to the point she couldn’t lift it. Her oncology team suggested Tori’s symptoms might be caused by the damage to nerve endings known as neuropathy, given the tingly sensation in her fingers. Neuropathy is a common side effect of some forms of treatment. But within a couple of weeks, Tori couldn’t walk upstairs, pick up her son, or hold a bag of groceries. When she reached out to Blum’s team, they called right away and told her to go the emergency room.
Tori had Guillain-Barre Syndrome (GBS), which is generally brought on by a viral infection. The virus in the vaccines had triggered GBS, which attacks the nerve endings and muscles and, in extreme cases, can lead to paralysis or even death if it affects a person’s breathing. Fortunately, Tori’s GBS was caught quickly. “But,” Tori says, “it was very scary, because the oncology team said they had never seen this severe a case before.”
Tori’s GBS was treated by Emory Healthcare’s neurology team, and in addition, at least three people from Blum’s oncology team checked on her daily when she was in the hospital. “We know that neurology is taking care of you,” she says they told her, “but we want to make sure you’re okay.”
Tori says, “That’s when I felt like this is different. They really, really care about their patients. They really want to make sure that we’re receiving the best care possible.”
Recovery
Today, about a year after her stem cell transplant, Tori has been in physical therapy for her arm. “It’s like day and night, and I’m expecting to make a full recovery,” she says. Next up will be the next round of scans to determine any next steps that might need to be taken. “Hopefully,” she says, “the cancer is eradicated and I’m just on to bigger and better things and getting back to my normal self.”
To her Winship team, Tori adds, “Thank you for taking such good care of me. Thank you for listening. Thank you for making me feel seen and heard. And thank you for being you, because this is tough work. I appreciate everything that you’ve done for me and for all the survivors and all the patients. God bless you all.”
About Winship Cancer Institute of Emory University
Winship Cancer Institute of Emory University, Georgia’s National Cancer Institute-designated Comprehensive Cancer Center, gives you access to the latest evidence-based care and clinical trials. Our experienced team sees more than 17,000 new patients each year and delivers comprehensive care to every individual. At Winship, we provide more than state-of-the-art therapy; we also offer cancer prevention, treatment, survivorship and support programs to all who have been affected by cancer.
Maryann's sister was a matched donor for the stem cell transplant to treat her leukemia. She credits Winship at Emory’s clinical research for her survival.
