After two years of treatment, Lindsey Rivero is celebrating her new lease on life while in remission from a rare cancer.
The nightmare began when Rivero and her husband were trying to have a second child. For reasons unknown to them or Rivero’s doctors, she was having infertility problems. It took three years, but she finally had a pregnancy that stuck.
“We both experienced this sigh of relief that we were past the area of the highest risk,” said Rivero, a 2010 Severna Park High School graduate.
But the joy of having another child was interrupted by some alarming blood counts during her pregnancy. Normally, platelet counts are between 150,000 and 400,000. Rivero’s were over 2 million, dangerously high for her and the baby.
Rivero started to have weekly blood tests to monitor her counts and try to find the cause. Hopes that it was something like an iron deficiency or an infection were dashed, and she needed to have a bone marrow biopsy. But it needed to wait until she had the baby.
Looking back, Rivero said there was another sign that something was wrong: debilitating night sweats. At first, she chalked it up to hormones and the extra weight of the baby, then postpartum hormones. But shortly after having her son, Griffin, Rivero had nothing left to attribute as the cause.
“When he was 3-and-a-half months old, I realized that this wasn’t hormone-related,” Rivero said. “There really was something wrong.”
Ten months after her first abnormal blood test, Rivero finally got a diagnosis: chronic myeloid leukemia (CML), a rare type of slowly progressing blood cancer found in cells that make red blood cells, platelets and most types of white blood cells.
Rivero started to take tyrosine kinase inhibitors (TKI), a class of chemotherapy that targets the gene that causes CML cells to reproduce out of control. She became so sick from treatment that she had to pause her vinyl craft work that she started after she stepped away from teaching special education after her daughter, Elliot, developed health problems as a baby. But they either did not work or needed to be discontinued due to severe side effects.
The only treatment she had left was a bone marrow transplant.
Rivero then asked her immediate family members if they wanted to be tested for matching human leukocyte antigen (HLA) markers, a type of protein that the immune system uses to identify foreign cells. Ten HLA markers are used, but relatives are only tested on six, since it’s assumed that they will already match on four of them. Donations that match with more HLA markers are more likely to succeed.
Rivero’s sister and cousin both wanted to donate and were found to be a match. But since her cousin matched on one more marker than her sister, and her sister would have to stop breastfeeding her youngest child to donate, her cousin was the one to donate.
For Rivero, the hardest part of treatment was having to leave her children for months of treatment. There aren’t any transplant centers in her area, so she had to travel five hours to Johns Hopkins in Baltimore. And bone marrow transplant leaves the recipient with no immunity for months, so she couldn’t risk going back to see her kids after transplant.
“I had to leave my kids to have the transplant done, but I also had to stay away from them for quite some time because of the risk of getting an infection from them was too high,” Rivero said.
Seven months passed before Rivero could go back to her family again. Technology was a lifeline for her.
“I don’t know how I would have made it through without FaceTime,” Rivero said.
During the difficult months of separation, she stayed in Ulman House, housing provided by the Ulman Foundation to young adults receiving cancer treatment a long way from their homes. But the foundation gave her more than just housing.
“They’ve connected with so many incredible other young adults going through cancer treatment,” Rivero said. “I’ve made some of my best friends through there. We’ve all just been there to support each other through out cancer journey.”
The transplant put her into remission, and she went back to live in Virginia on Mother’s Day, excited to finally be with her husband and children again.
“I was doing this so that I could have more time with them,” Rivero said.
Since she started treatment, Rivero has worked to raise awareness for CML, cancer in young adults and the Ulman Foundation. In February, she spoke at an event to raise money for the foundation she credited with changing her life after transplant.
But the excitement of remission comes with some uncertainty and anxiety.
“When you’re actively sick, you know what to expect,” said Rivero. “Side effects from meds. Good days, bad days. Once you’re in remission, it’s kind of scary because it means that it could come back.”
But she also looks forward to enjoying all the little experiences she took for granted before her cancer.
“Once all of this coronavirus stuff passes, I am really looking forward to going to see a movie,” said Rivero.
A previous version of this article incorrectly stated that Lindsey Rivero graduated from Broadneck High School. We regret the error.