Ecologist Marcelo Ardón Sayao turns to both science and religion when his wife is diagnosed with cancer.
Marcelo Ardón Sayao is really into swamps. He is an assistant professor in the Department of Forestry and Environmental Resources at NCSU. He obtained his BA in Biology and Environmental Science from Gettysburg College, his PhD from the University of Georgia, and did a postdoc at Duke University. His research focuses on how wetlands and streams transport and transform water and nutrients. He spends most of his time outside work with his wife and two kids. They enjoy dancing, building sandcastles, and spending time outside, though he hasn’t fully convinced his kids of the beauty of swamps.
This story originally aired on Aug. 18, 2017 in an episode titled “Boiling Points.”
Story Transcript
So that morning in October 2012, I had promised myself I wouldn’t swear, but when the doctor said, “small cell neuroendocrine cervical cancer,” I swore. Now, I don't swear very often so my wife got worried. I swore because, as a scientist and as a nerd, I had spent most of the previous night reading the technical literature, reading scientific papers about the different kinds of cervical cancer that we thought my wife might have. Of those that I read about, small cell cervical cancer was the worst one.
It’s a very aggressive form of cancer, it’s very rare, and, according to the papers, my wife, Erin, had about a 10 percent chance of living five years after diagnosis.
My wife, Erin, is an amazing woman. She was an accomplished horseman jumper. She graduated at the top of her class from Cornell. She did her dissertation research hugging trees in Costa Rica. Yes, she's a professional tree hugger. She learned how to salsa dance in Costa Rica, and when she dances, she doesn’t just dance. It’s more like she glides over the dance floor. She's fought off vampire bats that were attacking her students and she gave birth to our daughter without taking any pain meds.
We have a very good separation of duties in our marriage. So Erin is in charge of the small day-to-day decisions. So she decides what we have for dinner, even though I’m usually the one who cooks. She decides what Netflix show we’re going to binge on next. I’m in charge of the important, the long-term decisions. So we've been married for eleven years and we haven't had an important long-term decision come up yet, but I know one will.
So Erin has an amazing capacity of forming lifelong friends everywhere she goes, and those friends have been important.
So we’re both ecologists trying to balance life and academic careers, and things started getting weird around March of 2012 soon after we found out that Erin was pregnant with our second child. That pregnancy was not like the previous pregnancy. She kept having pains and she kept having bleeding, and the doctors and the midwives didn’t really know what was going on.
Then we have this weird prenatal test result. So we were excited to use these new, cutting-edge technology, noninvasive, second-generation sequencing tests that all it required was a blood test from Erin to see if there were any genetic problems with our developing son. The tests came back saying that there were two chromosomal abnormalities, which meant that the baby was not viable. So they did the test again, and again they came up with these chromosomal abnormalities.
So they did another test and they put this really big needle in Erin’s belly, and then those tests showed that everything was normal. So the doctors decided that they didn’t know what was up with those results.
Erin, being the smart cookie that she is, thought that maybe having abnormal DNA floating through her blood stream could indicate that she had cancer. And she told me, “Maybe I have cancer.”
At the time, it was such a weird thing to think about. Erin had always been healthy. She always ate right. She always exercised. The thought of her having cancer was just such a remote possibility that I didn’t think that was the case.
So I said, “No, that can’t be.” And we told the doctors and the doctors said, “No, no, no. We just don’t understand these genetic tests yet.”
Well, Erin was right. If there was ever a time that I wish she hadn’t been right, it was this one. And those doctors actually wrote a paper later on about using these prenatal tests as a way to detect metastatic cancer.
So our son Jax was born in October 2012 and the birth was magical. It was beautiful. After all those months of uncertainty and bleeding and pain, the birth went through with no problems and Jax came out and he's beautiful. I swear, he was smiling, and he's still smiling now, and he's kept on smiling this whole time.
But then that night, the pain meds wore off and all the pains that Erin had been having came back with a vengeance. So they did all these tests and an MRI. Erin is claustrophobic so she didn’t like that tunnel. We had doctors coming in and out of our room as we were trying to get to know our newborn son. And they told us that they had found tumors in Erin’s pelvis. The pain had gotten so bad two weeks earlier because she had actually fractured her pelvis just sitting writing thank-you notes with our daughter after her third birthday party. This is why I don’t write thank-you notes.
After we got the diagnosis, Erin started doing chemo and radiation treatments. If you've never been to a chemo infusion room, one of the cancer survivors we met along the way described it best. She said it’s a lot like a party. You have comfy chairs, you have music, you have snacks, and you have drugs, lots of drugs. But the mood is a little different there.
When Erin learned of all the treatments she was going to have to undergo, her first concern was not that she was going to lose her hair or the nausea or whether or not she was going to be able to tolerate all these treatments. Her first concern was that she wasn’t going to be able to breastfeed our son, Jax. So being the go-getter that she is, she got on Facebook, she got on email, she called people. And before we knew it, we had a chest freezer full of donated breast milk and Jax was able to breastfeed until he was almost one, or bottle breastfeed.
So that night when they told us the small cell results, I went back to the literature, reading the papers, and I got scared. It was scary to read about the poor prognosis and the low cancer-specific survival rates and that the average patient only lived to one or two years, at most, after diagnosis. But as I sat there thinking about those papers and those results, I started seeing a glimmer of hope. All of those numbers were about average patients and average people. As you've heard already, Erin is not average.
So I knew that she had a good chance to fight this. She was very healthy before all of this started. She had good access to very good medical care. She had insurance to pay for this very good medical care. And she had a positive attitude. All things that are important for cancer survival.
Reading the papers was also helpful to make sure that the doctors were recommending the treatments that we were reading about because Erin’s health is too important for us to just leave it up to the doctors. So even though this science knowledge gave me courage and gave me some hope, it still didn’t quite let me understand or fully comprehend what was going on. Science is a very powerful friend, but it’s not a very nurturing friend.
Having grown up in Costa Rica, religion has always been a part of my life. Costa Rica is a predominantly dominant Catholic country and I attended thirteen years of Catholic school. So while I wasn’t one that would attend church every Sunday, I always prayed at night. But those first few nights after the diagnosis, I had a hard time praying. I was mad. Why would a God, a benevolent God let this happen to us, to our family?
So right around that time, I started reading about mindful meditation. And while I never did it according to the way they say to do it, spending an hour or however a day, I would only spend five or ten minutes every day, and particularly before bed, and just sitting there focusing on breath and focusing on that anger and those questions. Rather than trying to answer them and just letting them sit there, somehow I made them lose their power.
So around that time, I also started saying the prayer of Saint Francis or Peace Prayer. Now, I have repeated that prayer every morning during the thirteen years of Catholic school and at that time, it didn’t mean much. But it’s a beautiful prayer and it’s a beautiful prayer for caregivers. It’s about seeking to understand those around you as opposed to seeking to be understood. It’s about bringing hope where there is despair, about bringing light where there is darkness, about bringing joy where there is darkness. And saying that prayer right before going to sleep always helped me go to sleep. It helped me get through those long, long nights.
Now, the past 4 and a half years, the cancer has gone and come back numerous times. Erin is still undergoing chemo treatment and teaching five college courses. With grace and courage, she keeps moving on. I do my best to support her and support our little kids.
Our family has been vital in supporting us through all of this but so have our friends and scientists and people that we met along the way. We've received everything from donated breast milk to rides to meals, and all these groups of people have been amazing in supporting us.
I don't know if my prayers have helped Erin directly. I don't know if the prayers of all of our friends and scientist friends have helped Erin directly, but I do know that Erin is still here. I know that science and religion have both been important coping mechanisms for me. Both have given me hope when hope was hard to find.
There's a lot that’s been said about science and religion being opposites. I think they're complementary and I think we need them both. Our family needs them both as we face cancer every day. So we keep reading papers, we keep praying, we dance, we laugh, we love, and I try not to swear at doctors’ appointments. Thank you.