Cynthia Hayes, a cancer advocate and author of The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer, interviewed Thao, a cancer patient from Saigon about her experience becoming a mother. We’ve shared Thao’s story here, but you can find the original on The Big Ordeal website.
Thao, who lives in Saigon, was 24 when she was diagnosed with chronic myeloid leukemia (CML) and had to decide if having the child she always dreamed of would be worth the risk of stopping treatment.
“I hadn’t seen a doctor in 12 years, but one day, I felt a sharp pain in my stomach and went to the emergency room. They told me that my spleen was enlarged and did some additional testing.”
“The doctors gave me some medication and told me to come back in 10 days. When I came back, nothing had improved so they sent me to the blood transfusion hospital. There they did all sorts of tests and that’s when I learned I had CML.”
“When they told me it was cancer, I felt empty. I was so afraid. I didn’t know what to think. During the daytime, I tried to act normal in front of others, but at night when I was alone, I started to think about it and was very upset. My family helped me get over my fears and understand that I was going to be okay. That really helped. It also helped being treated at the bone transplant hospital. There were a lot of other patients like me, so I could see that maybe I could get through this. I was really only upset for a short time.”
Not Giving Up
“I was off from work for just two weeks and that was hard because I had nothing to distract me. I couldn’t help but think about my cancer and had to fight with it every day. Then I went back to work, and my cancer receded into the background in my mind. But the medication was very expensive. After about 4 months, I was able to get on the patient assistance program through The Max Foundation, which made it more affordable.”
“I had been dating the same guy for two years when I was diagnosed, and I told him he should find someone else to marry. I would never be able to have children and I knew he wanted kids. But he loved me and didn’t want anyone else. He kept following me and taking care of me. My father didn’t want us to get married. He was afraid that I would suffer. A young bride is supposed to move in with her husband’s family and is supposed to have kids. He was afraid his family wouldn’t accept me and would treat me badly if I had no children. We dated for another 3 years and then my father finally said yes, and we got married. He just wasn’t willing to give up on me.”
Assessing the Risk
“After I had been on the medication for about 5 years, I joined a patient workshop where I raised the question of it is possible to have a baby with CML. I learned that if the molecular test is negative for the disease – if the disease is under control from the medication and your body no longer shows you have it – it is possible. You have to come off the medicine before getting pregnant and while carrying the child and nursing. The doctor said there is a 50% chance it would be okay, which meant a 50% chance that I would relapse and then get worse. There was also a risk that the baby wouldn’t develop appropriately or that we would need to sacrifice my life for the baby’s or the reverse.”
“I had had negative tests for two years. I wanted to have a baby. When I came home from the workshop, I spoke with my husband and family and we agreed I should try. It would be worth the risk. I told my husband that if we are lucky and have a strong belief in it, we can get a baby and be fine. Besides, I told him, he could remarry if anything happened to me – he was young, and life is long. But we had to have faith.”
The Right Decision
I stopped the medication and was off it for a total of 18 months. But I stayed focused on my health and my cancer remained under control. In April 2011, my son was born.
“I stopped the medication and was off it for a total of 18 months. But I stayed focused on my health and my cancer remained under control. In April 2011, my son was born. He is my motivation for fighting the disease and pushing through. Every day when I see my son, I know I have another day to live. I still work, but my main focus is on raising him. And his grandparents are so happy to have him. I hope that I can live to be 60 so that he will be an adult and can take care of himself.”
“My husband still worries about my cancer, but we rarely talk about it. Sometimes it feels as if I must have gotten the wrong diagnosis because I don’t feel like I have any disease at all. I’ve talked to the doctor about getting off the medication altogether, but he said it’s not clear they can detect the changes well enough to get stop treatment. But I have a strong belief that I am cured.”
A Lucky Patient
“I consider myself a lucky patient—I didn’t have to have the bone marrow transplant, which seems like it would have been hard to endure. So, if I can inspire and support other patients, that is my happiness, to help others. I have a strong belief in life and am always giving new patients advice. I try to help when patients are fearful or concerned about treatment working. I’m not a religious person, but I put my faith in the doctors and medicine. So far, it seems to have worked.”
Thank you to Cynthia Hayes for sharing this interview with our community. You can learn more about Cynthia’s book and read more patient stories at The Big Ordeal.