The end of a long journey with chemotherapy

Cancer can affect anyone, regardless of age and how healthy they are. Karen Hughes, a young and active woman experienced firsthand how cancer can strike out of nowhere.

“My journey with cancer started when I returned from a trip to Kenya with my best friend, Saarah, on June 11, 2019,” Hughes says. “An hour after landing, I noticed a big bump on my collarbone, had severe hot flashes, and my face and neck started to swell and go numb. We thought it was some sort of allergic reaction, so I took Benadryl and didn’t think anything else of it.”

But after days of denial, light-headedness, difficulty breathing, excruciating pain, frustrating trips to multiple doctors, and finally a trip to the emergency room, Hughes received the life-changing diagnosis.

“After X-rays, CT scans, ultrasounds of my neck and chest, and more bloodwork,” she says, “I found out I had multiple tumors, including a tumor in my chest that was so large it had pushed both of my lungs to my sides, 100% blocked my left brachiocephalic vein, 80% blocked my superior vena cava, and two out of the three tumors in my neck had wrapped around and were pressing against another main artery.”

If Hughes had waited any longer to go to the emergency room, she might have suffered severe, permanent brain damage that could have been fatal due to the blood that wasn’t draining from her brain. With the support of her family around her, she was diagnosed with primary mediastinal b-cell lymphoma (PMBL), a rare and aggressive form of non-Hodgkin’s lymphoma that affects mostly young women ages 25-40, and superior vena ceva syndrome (SVCS), a compression or blockage of a major vein in the chest.

Because of the SVCS, Hughes was on bedrest for several weeks, unable to lay flat due to terrible pain and inability to breathe caused by the compression of her vein. She had to sit at an 85-degree angle 24/7. Still, her symptoms continued to quickly worsen. With the support of her sister Karla, an anesthesiologist, Hughes and her doctors decided to start emergency chemotherapy, and thus her treatment journey at Advocate Illinois Masonic Medical Center began.

Hughes’ long and draining chemotherapy regimen consisted of 5-day long stays in the hospital every two weeks, during which she received 24-hour chemo treatments via IV.

“Throughout her treatment she had such a positive attitude and was always so sweet, we would walk in her room in the mornings and she would be on her laptop working in the middle of a meeting on video all while her nurses were prepping for her next chemo infusion,” Flor Ortega, a oncology patient navigator says.

“I still remember the Friday the doctor confirmed her,” Ortega says. “She teared up, took a few deep breaths, looked at her sister who was sitting at bedside and then said: ‘OK so what’s next!’”

The treatments were so strong that Karen’s hair began to fall out almost immediately after the completion of her first cycle.

“I cried, A LOT,” Karen says. “I cried because it made everything so much more real.”

But Karen continued to fight through her treatments, even when a large mass was found in her right atrium during a routine electrocardiogram (EKG). Her doctors didn’t know if this was another tumor or a blood clot. After another long stay in the hospital and a series of more tests and procedures, Karen and her doctors decided to treat the mass with blood thinners for 12 weeks. Thankfully, the mass had shrunk and only a small residual mass remained.

After a long and tiring journey, and a summer spent almost entirely in the hospital, Karen celebrated her last day of chemo with her nurses and doctors on Oct. 11.

“I’m so grateful for everything I’ve been through and for everyone in my life,” Hughes says, “especially the staff at Advocate. I can’t thank them enough for their friendship and their care; they’ve made this journey less scary and given me strength.”

Hughes is dedicated to giving back to those who supported her during her journey and to inspiring others who battle cancer to remain positive. “I hope my story helps others and shows that positivity really does make a difference,” she says. “I’ve realized just how resilient a person can be in the face of trials and now, more than ever, I truly believe what doesn’t kill you makes you stronger.”

She recently received the exciting news that she is now in remission and is cancer-free. She hopes her story will be an example to others to listen to their bodies and not to wait to seek medical treatment. And she plans to participate in a Leukemia and Lymphoma Society event to give back.

“This patient is one of the ones who remind you why you went into direct patient care,” says Advocate Masonic nurse Kristin Niznik “Her strength and resilience awe me. Not only has she helped me grow as a nurse but also as a person. For this reason I will always remain thankful that I had the privilege of encountering her in my nursing profession.”

If you experience abnormal symptoms or pain, talk to your doctor. The key to treating cancer is detecting and diagnosing it early.