After a year and a half battling cancer, there is only one thing Sara Deyoung wants others to know about the disease: “always get a second opinion.”
Deyoung began training for an 80-mile relay with her friends in 2012. She thought her “soul-sucking fatigue” was just part of the training, but she was also concerned about breast pain so she decided to go to the doctor.
“I was told if it’s painful, it’s not cancer,” she said. “‘Thank goodness it hurts because cancer doesn’t hurt.’ I heard that a lot.”
Because of her sluggishness, she was referred to an endocrinologist, who found a small lump in her armpit and checked her thyroid level. At the time, she was told she might have Graves disease.
After seven months, she was still sleeping 16 to 17 hours a day. The endocrinologist determined her thyroid levels were off, but, based on the test results, not severe enough to treat.
As he began to question the validity of her complaints, the doctor suggested they reevaluate bloodwork in three months, while Deyoung just wondered if she was ever going to be a functioning human being again.
In December, she decided to go back to her primary care physician to check out the swollen lymph node in her armpit. That’s when all the pieces of the puzzle fit together, and she was diagnosed with cancer.
Deyoung said the hardest part of her diagnosis was telling family, friends and her two children, Taylor and Eli. With the help of her husband, Josh, the two presented the diagnosis to their loved ones in a way that showed they had done their research and felt confident about the road they were on.
“I never had the attitude that I was going to die,” she said. “Ever. I was just ‘Alright, this is what we are going to do, and it’s just one step after another.’ You’ve got to get through it.”
Christie Clinic found two areas of disease, the largest one measuring 3.25 cm. Deyoung was diagnosed with invasive ductal carcinoma, which was both estrogen and progesterone positive. She also learned that her K167 score, which determines the rate of cell growth, was 40 percent instead of the normal five to 15 percent.
Christie scheduled surgery to remove the mass found in Deyoung while she researched other options.
“My body was shutting down,” she said. “Everything was lined up against me.”
And because Deyoung only has one life, she decided to get a second opinion.
“It’s my life,” she said. “It wasn’t just a hangnail I was getting a second opinion on. It was my life. We grocery shop according to where we can find the best prices on a gallon of milk or carton of eggs. We go car shopping, house hunting, garage saling, but when it comes to medicine everyone is like ‘I like my doctor.’”
“Everyone should get a second opinion because you need to get in another school of thought.” she said. “You need to get on someone else’s budget, and another line item of someone else functioning differently than this particular doctor. You can think your doctor is the nicest guy ever, and that feeling isn’t going to save your life.”
“He has a boss to report to,” she continued. “They have protocol that that hospital or medical facility follows, and that’s just the way they are going to operate. But that’s not the only way to operate. You need to find another facility that operates differently, and ask them what they think. Asking the doctor down the hall at the same facility isn’t going to do you any good.”
Deyoung chose to explore her options at the Mayo Clinic in Minneapolis where she was greeted with a PET scan, which Christie Clinic would not perform on her. Without that PET scan, doctors would not have found all three cancer spots, one of which measured at 5.7 cm, twice the size she was originally told. They also may have missed the one embedded in her chest muscles.
“They saved my life at the Mayo Clinic.,” she said. “They said the fatigue I was experiencing was my body shutting down due to my advanced stage of cancer. I believed I was going to be okay because they Mayo Clinic told me I was going to be okay.”
“Christie wouldn’t have done what I thought they needed to do,” she said. “And that no fault of Christie’s because my responsibility of my health is on me. It’s not on them. You want to trust your doctors, but you can’t go and ask one doctor what they think and say ‘Well, I trusted you.’ Well, why did you trust them? What information did you have to make the best decision? That falls on us.”
“Growing up, my dad told us several times that nobody cares about your health as much as you do,” she said. “If you don’t care about it, then no one else will care about it. When my oncologist goes home at night, they’re home. When I go home from the oncologist, I still have cancer. You have to get a second opinion.”
Mayo Clinic also wanted to do surgery, but first Deyoung had to endure 16 rounds of chemotherapy to shrink the tumors. On January 10 she visited Mayo to work on a plan with her entire medical team, and on January 27, 2013 Deyoung began chemotherapy treatments in Champaign.
Her mom came to stay with the family as she went through the eight-week process. While she experienced bold-chilling cold, vomiting and lethargy, Deyoung made sure her kids knew she was always available to them.
“I told them they could come and see me whenever they needed to,” she said. “Whether I was sleeping or throwing up. If they wanted to see me, it’s an open door policy.”
Eli would come home after school, drop his things and go straight to his mom’s room.
“There were times I would wake up a sweaty mess, and Eli is sitting next to me, playing Subway Surfers or Mine Craft,” she said. “He would ask if I wanted to watch (a TV show) with him. Maybe I would stay awake for the whole episode, maybe I wouldn’t. But when I’d wake up, he’d be there.”
Taylor would also climb into her bed to do homework, talk or read.
Deyoung said she is thankful for the timing of the cancer because her children will be spared the emotional hardships that go along with watching a parent go through cancer. Her diagnosis also came at a time when she was not the only caregiver, when the kids were in school and were able to find solace in their teachers and friends.
“There will come a day when what I look like now is what I’ve always looked like to them,” she said. “They’ll forget this. That’s a huge blessing on me.”
She also said she is grateful that the cancer came after she had them because the cancer medication destroyed her fertility. Deyoung, who has been a Christian for 10 years, said her faith played a role in overcoming the disease.
“You just look at those blessings, and God’s timing is perfect,” she said. “He gave me what I could handle at a time when I could handle it.”
But Deyoung knows she did not go through the process alone. Not only did she have the support of her family, she was also surrounded by many friends, who not only made her family meals, but stayed with her through chemotherapy, visited her at Mayo, and sent messages and prayers her way.
“They were showing up for things that we didn’t even know we needed,” she said. “Everyone wanted to help, everyone wanted to pitch in and do what they could.”
Deyoung received a “cancer vision” (a television) from The Community Evangelical Free Church, a deep freezer for all the meals, many homemade blankets, a new mattress and knit socks. She was also gifted a “Super Sexy Cancer” book, a fake pink eyelashes and a neon green wig. But one of the best gifts Deyoung received was from her friends Erika Ross and Julie Odum.
“They gave me seven bad days; bottom-of-the-pit bad days and no one is going to bother you and it is ok,” she said. “But (they told me) ‘You only get seven so chin up.’”
Throughout the treatment, Deyoung only used three.
“I was always afraid it was going to get worse and worse,” she explained.
The women picked up the kids from school, took care of evening activities and made sure dinner was ready.
“And when I needed to be cheered up, they would cheer me up,” she said. “The women in my life supported me through all of it. They encouraged me when I needed encouraged and when I needed to rest, they would let me rest. They met me where I needed to be met. They all acted like I was a person not a cancer victim.”
Deyoung not only felt support from the Mahomet community, but reconnected with old friends and met new friends through the “Sara’s Strength” facebook page the women created for her.
“Josh and I are both amazed at the immense support we got online,” she said. “I think that being not only honest but open through this has been a blessing for us. It was an enormous blessing that I could feel vulnerable.”
“The blessings I got back from being open and sharing were amazing,” she said. “It took me months to understand what people were saying when they told me I was so inspiring. I felt like I’d been mugged down a back alley. What’s inspiring about that? I didn’t sign up for it. I didn’t get what they were saying, but either my mom or Josh said, it’s the emotional level people can connect on. People feel they can empathize with you, share these feelings and have hope on the other side of that. “
After months of chemotherapy treatments, surgeries to remove the tumors and a mastectomy, Deyoung thought she was finally on the upside of treatments.
But after her mastectomy, she learned that cancer scar tissue was found in her lymph nodes, and in order to take care of any additional cancer cells she needed 25 rounds of radiation treatments.
In August 2013, she dropped her kids off on their first day of school and then headed to Minneapolis to begin five weeks of radiation treatments, which would not only eradicate any cancer cells, but also reduce the chance of the cancer coming back in her life from a 30-percent chance to a 10-percent chance.
“Radiation was the hardest for me,” she said. “That was hard for me because I thought I was done. I was so mad at the way I looked after surgery. Everyone was like, ‘You’re in remission, you must be so happy.’ But nothing had changed. I still needed surgery. I still needed chemo. And now I need radiation. I wasn’t in a good spot at all when I came home from surgery. That was a very difficult time. I took (two) bad days. Mentally, I wasn’t ready for it. “
But Deyoung only spent three days out of nearly 35 days in Minneapolis alone. Family and friends rotated coming up to visit and take care of their friend.
“My friends’ husbands had to watch the kids and get them off to school or do their homeschooling,” she said. “And that these guys were so willing to help their wives come see me. It didn’t get lost on me and Josh that whole families were rallying around me.”
“I don’t think that cancer changes people as to who they are, I think it illuminates who they are,” she said.
“Through this whole thing we knew how we felt about (our friends), but this last (24) months, we have really heard clearly what they think of us,” she said. “That’s humbling.”
Deyoung received her 30th and final chemotherapy treatment with her husband and children by her side in May, and celebrated one year in remission in June. Over the summer, she was encouraged to maintain the fat tissue in her stomach to help construct breasts or her “toobies” (“tummy boobies”), which were also implanted in June.
“Cancer is and never will be a blessing to anybody, but I think there are many lessons to be gleaned from cancer like relationships and who you think you are, and what God believes can do,” she said. “But I don’t think it will ever be a blessing unless you ask God to help. You need to have God’s help.”
“I’m like hey God, than you for letting this happen at this time,” she continued. “I am able to be thankful.”
“We would not choose this for anybody, but with the response I’ve had to chemo and radiation, and knowing that I am going to live, we would never change it,” she said. “We wouldn’t go back and ask to have this taken out of our history. “
“You think, ‘Give it to me bad enough, I can handle it,” she said. “Let me carry it out so they don’t have to. Let me carry someone’s burden. Let this next blood draw be what they need to figure it out so no one else has to go through this.”
“You just get this empathy, you get this drive that you want to spare everyone else from ever getting it,” she said. “If I can take it on, give it to me and don’t give it to them. But maybe you are robbing them from an experience like Josh and I had. Our marriage is out of this world. It was great before, but it is out of this world right now.”
Deyoung kicked off the 2014 school year by committing herself to her children and their education by joining a homeschool coop. Instead of dropping her kids off at school this year, the entire Deyoung family took a trip to Disney World.
Now, nearly two years later, she finished her treatment at Mayo in October after they completed her reconstructive surgery.
