Patient Testimonial - “My Journey With This Nasty Disease”
Most everyone remembers the year 2020 as the year of the COVID-19 pandemic. In addition to that, 41-year-old Jami Castle remembers 2020 as the year that she kept getting sick, had to take short-term disability, lost her job, and was misdiagnosed for a while.
Jami recalls playing around with her kids and sliding on the kitchen tile floor, falling to the floor but thinking nothing of it. Over the next few months, she started to experience horrible back pain. The pain progressed and finally one day, Jami went to CNOS Urgent Care over her lunch break for an x-ray. She received a call saying she should have an MRI as well as a follow-up to see one of their orthopedic surgeons. When the pain did not subside, the doctor ordered a bone scan for Jami.
“I will never forget April 26, 2021 – the day I was told I had cancer,” Jami says. After she heard those words, she explained the rest of the appointment was like the voices of Charlie Brown’s teacher, just garble and not making sense. Jami says her husband was the one asking questions, answering what was asked of her, and holding her hand tightly through the rest of the appointment. She explains, “I was completely emotionally wrecked at that moment.”
Jami does not remember a lot of details from her first appointment at the June E. Nylen Cancer Center. What she does recall is the people, specifically her oncologist and two patient advocates, and how they made her feel. “They were so good to me and I could feel their empathy for me. I felt at ease with the doctor and liked his personality and he cared about my feelings.”
Jami was diagnosed with non-small cell lung carcinoma with metastases to her brain and bones. She had second opinions at Nebraska Medical Center and Mayo that confirmed her treatment plan that the June E. Nylen Cancer Center had recommended. Jami was confident she was in good hands at the Cancer Center in Sioux City.
Jami endured multiple scans, a harsh chemotherapy regimen that made her weak, as well as radiation treatments to her brain. In October 2021 she had surgery to add a rod to her femur after having deteriorating of that bone to help prevent it from breaking.
Finding humor in her journey, Jami shares, “I am only 4 foot 10 inches tall so had to have a child-sized rod added.”
Jami started to receive immunotherapy as part of her treatment. In February 2023 she had disease progression and learned she was positive for the HER2 mutation after NGS and Guardant360 testing. Jami’s treatment was changed to ENHERTU, which she is still on today.
In November 2023 Jami had a PET scan that showed some stability in her cancer, no new lesions were found, and her lung tumor had gotten smaller. She continues to have a PET scan every three months. Jami also has MRIs of her brain and her most recent one of these in December 2023 also showed no evidence of cancer there. Additionally, Jami needs to have an echocardiogram because her treatment could affect the muscle around her heart.
“People tell me how strong I am and that I am always smiling. While this is true, I also have bad days as well. I’m not super woman, but I truly believe having a positive attitude helps to beat my cancer. Having a huge support system helps. I could not do this without God, my family, and my Morningside Lutheran Church family. My husband and my kids are my reason I can’t give up and I continue to fight. My parents are amazing because they keep track of all my different appointments. And I cannot even begin to say how fantastic the people are at June E. Nylen Cancer Center! From the front desk check-in, to lab, to the chemo nurse, radiology, to the excellent doctors. When I go in for treatment, everyone knows my name and knows what I need when I get there… a Diet Coke, warm blankets, and snacks. As weird as this sounds, I look forward to seeing them. That staff feels like family.”
Jami’s faith and strength are evident because as much as she has endured she continues to say, “Despite my journey with this nasty disease, I always say it could be worse.”
Jami Castle shares her story at the June E. Nylen Cancer Center's recent event, Rock the Cure, in April 2024.
Jami and her family.
Jami provided some overall statistics about her cancer journey when she shared her story at the June E. Nylen Cancer Center’s recent fundraiser, Rock the Cure:
55 is the number of radiation treatments I had
38 was the age I was diagnosed
13 MRI’s
13 Pet Scans
9 X-rays
6 CT scans
7 different drugs through treatments
3 years of having cancer
3 lung biopsies
2 is the number of areas outside my lung that cancer spread to
2 is the number of kids I have
2 surgeries
1 bone scan
1 iron fusion
250 times I’ve had to say my name and date of birth when I enter the Cancer Center
45 is the number of different wigs I have