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Invisible Project: A Chemotherapy Patient’s Experience

Julie Dye

Last year, fifty-year-old Julie Dye never imagined she would be a cancer patient, and more important, a cancer survivor. Dedicated to her job as a youth case manager, she traveled often to meet with young underprivileged adults. It was her job to prepare them for the workforce, teaching them skills they would need to be successful. The hours were grueling, but her job was very rewarding.

On the weekends, Julie did her best to spend time with her husband and two children. Yet she was tired. In 2011, she had double pneumonia. After a 12-day stay in the hospital, Julie went back to work. Unfortunately, she never regained her strength and found herself unable to manage the busy workload. Her understanding boss transferred her to a new position as an employment specialist.

Despite working solely from the main office, Julie was still constantly exhausted. She was also experiencing more problems during her menstrual cycle, bleeding heavily for days. She contacted her gynecologist, and after a few tests, Julie and her doctor decided a hysterectomy would be the answer to her lack of energy and horrific periods.

On April 26, 2012, Julie had the hysterectomy that changed her entire life. Surgeons discovered a cancerous tumor nine centimeters in diameter in her uterus. She was diagnosed with uterine carcinosarcoma, also known as malignant mixed müllerian tumors (MMMT), a rare and highly aggressive cancer.

The news was shocking, devastating and terrifying, and the prognosis was poor. In the days that followed, Julie, with the help of her oncologist and the support and love of her husband, decided on a treatment protocol. She would undergo another surgery—a lymphadenectomy—and have chemotherapy.

The surgeries were invasive and taxing on her body, each taking six weeks to heal. Surgeons removed 32 lymph nodes from her pelvic and aortic regions. Thankfully, the lymph nodes were cancer-free, and the tumor had not spread to any other organs.

Having used all of her family medical leave meant Julie had to work during her six cycles of chemotherapy. Chemo, and its grueling side effects, changed her life. She had severe bone and joint pain, as well as fatigue. As the rounds progressed, her symptoms worsened. On the roughest days she would take benzodiazepine medications.

Work was a challenge, and she was out quite a bit. She was grateful to work for people who were empathetic to her needs and allowed her time to heal.

Ten days after her first treatment Julie began to lose her hair. When it became emotionally damaging, Julie’s husband shaved her head, which felt liberating since she had taken charge.

Despite having various wigs, Julie felt the most comfortable bald or with a hat on her head. As friends called asking how they could help, Julie came up with a great idea. She asked loved ones to send her a hat that would remind her of them. It made her friends feel helpful and it brightened her days: she knew she was embraced with love, support and strength.

Julie found comfort in listening to music, and her husband, children and parents became her rock. They gave her space when she needed to be alone; they made her laugh when she needed to smile; they loved her unconditionally through it all.

On January 3, 2013, Julie completed treatments and is now cancer-free. Each day she feels a little bit better and stronger. While she did develop edema in her left leg (painful swelling caused by abnormal fluid retention), she has been able to manage it with ibuprofen.

Through her experience, Julie has learned the importance of support. Support groups and online resources offer a way to connect. She learned much about her disease from survivors she met online. The American Cancer Society’s site, WhatNext.com, also helped Julie. Here she could ask questions and other members would answer based on personal cancer experiences.

An organization that brightened Julie’s spirits during chemo was Rooms That Rock 4 Chemo. This nonprofit is devoted to creating positive, healing spaces that support those during challenging times. In Julie’s case, the organization completely transformed the cold, sterile and outdated chemo rooms at her medical center into warm, comfortable and inviting spaces. It had a huge impact on Julie, who spent at least six hours in a chemo chair every three weeks.

“Being diagnosed with cancer is scary. Nothing prepares you for it, and nothing prepares you for those first hours of your chemotherapy infusion. Rooms That Rock 4 Chemo made those hours of chemotherapy easier. To be in a colorful, calming room, filled with beautiful artwork was a true blessing.”

Julie continues to focus on healing. She is working on making the emotional and mental switch from cancer patient to cancer survivor. As she finds her new self, Julie wishes more people understood that cancer is not a death sentence. Hearing stories from others about people who beat cancer gave her reason to fight. “You need encouragement. You also sometimes need people to say you look great, even if you don’t. Your self-worth is greatly impacted.”

Julie believes the most important changes she has encountered since her diagnosis are those within. Cancer has taught her to appreciate those that matter most in her life. She sees there is no need to waste precious energy worrying about things over which she has no control. Her life, in many aspects, has become simpler, and she cherishes family.

Yet the greatest lessons chemo has taught her are to ask for and accept help, and to say “no.” For most women, this can be a challenge. Julie now knows it is a necessity for her.

“I am recognizing I am stronger than I believed. I am a survivor who is learning to put my health and myself first.”

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