Rica Lucia had hoped that her cancer was gone for good. The first time she was diagnosed, in 2008, she was in Jakarta, Indonesia, visiting family. She had been feeling abnormally tired, out of breath and was getting headaches. The hospital in Indonesia found that her platelet count was low, but because they did not have the proper technology, they could not diagnose her. They referred her to a hospital in Singapore, and it was there that she was diagnosed with acute myelogenous leukemia (AML).
“I had to decide to do treatment in Singapore or back home in Wichita,” she says. “That was a struggle because Singapore was only an hour from Jakarta, but Wichita is my second home, so I decided to go to Wichita.”
But Lucia didn’t realize how serious her leukemia diagnosis was at first. “Little did I know, the kind I have, AML, it grows fast.” She spent about 2 more months with her family before making the trip to Wichita for treatment. Now she says that delay nearly cost her her life.
“I had chemo, and after the chemo I had multi-organ failure. My liver and kidney didn’t function. They put me on morphine; I didn’t know anything. They told my family I had 3 days to live, but come 3 days I woke up.” When she woke up, Lucia remembers pain from swelling and confusion from the medication. She spent 2 weeks in the hospital intensive care unit.
Lucia’s leukemia went into remission for about a year, but in December 2009 it came back. Her doctors said she would need a stem cell transplant. Of Lucia’s 7 brothers and sisters, one matched as a potential donor.
“When they asked me to come,” says Bagus Chandra, Lucia’s brother, “I just thought to come right away.”
“The thing is, if somebody else (among) my siblings would be the donor, it’s probably harder for them to come here because of different situations. He’s the one who has the time to come here,” Lucia says.
Chandra came all the way from Indonesia, leaving a family of his own behind, to help his sister battle AML. He donated his stem cells for her transplant, and then he stayed for 6 months to care for her as she recovered.
“I’m just so grateful and thankful to God,” says Lucia about Chandra.
Chandra donated those cells the first time back in 2010, and the transplant was successful. Lucia’s cancer was once again in remission and she was hopeful it would stay that way. But this past September during a regular checkup, she learned that her platelet count was low. Her oncologist sent her to the hospital that very same day. Her leukemia had returned. Lucia’s doctor told her it was rare to have a relapse after being in remission so long.
“I was down for a little while—I have to go through this again, but then with my family and my husband’s support, I gather myself. I have to face it,” Lucia says.
And again her brother was there to support her. Chandra donated his cells for a second time for Lucia’s transplant, which took place January 15. He is currently staying with her at the American Cancer Society Hope Lodge facility in Kansas City. The Hope Lodge program offers free, home-like accommodations for cancer patients and their caregivers whose best treatment options are away from home.
Lucia says her symptoms following this most recent transplant are different from those she had in 2010.
“The first time I had more nausea and this time I have weird stuff. I have joint pain, rash that is itchy and burns, and more medication. That medication has weird effects. One makes me feel hot inside but I don’t have a temperature.”
Despite the symptoms, Lucia remains confident that the outcome will once again be positive.
“Sometimes it’s not easy when you’re condition is so down,” she says. “It’s up and down after the transplant, sometimes I feel better and sometimes I don’t, but it’s going to pass.”
Lucia is following strict guidelines to limit her risk of getting infections, because the transplant weakened her immune system. As part of that, she cannot be in public places and cannot travel except for treatment for 100 days. That means many days are spent indoors with her brother. He keeps her company, cooks for her and runs everyday errands as she recovers.
“We are closely tied…and we have a big hope that she’s going to recover,” Chandra says. “The Hope Lodge, at a time like this, it’s a blessing for me. I come…from a different culture and society. The kindness of everyone here, and also the facilities they give us…it’s very (touching) for me, especially when I’m away from family.”
Lucia and her brother will stay at the Hope Lodge facility for 6 weeks. If all goes well, after that time she’ll return home to Wichita and her husband to continue recovering.
This being her third bout with AML, she knows what it takes to remain optimistic. And she has advice for others like her with AML:
“Don’t be scared and just have faith. It’s not easy but a lot of people already go through it so you can do it, too,” she says. “The medical technology now is so improved. They have much better communication. Fight a good fight.”