In late September of 2002, Melissa Leigh Sutton, age 24, was diagnosed with Hodgkin's Lymphoma. She had been sick, on and off, since the beginning of the year. Various doctors had told her: flu, bronchitis, allergies, bad cold, etc.
She began to lose weight, eventually about 40 pounds in all. She had itching, fevers, and drenching night sweats. One doctor even said to her that he'd think she might have cancer, but she was "too young." He sent her on her way with another of what would turn out to be a series of prescriptions for antibiotics. Another physician accused her of being on drugs because of her weight loss. All of them were wrong. One would think that such a disease as cancer would be quite obvious to a physician. It wasn't. Only about 7,000 cases of Hodgkin's Lymphoma occur in the United States each year.
Missy had to get sicker and sicker before she finally got sick enough for someone to figure out why. There are Hodgkin's patients who go even longer than Missy did, being repeatedly mis-diagnosed. It's a shame, but it happens and seems to happen especially to undiagnosed Hodgkin's patients, maybe because most of them are so young, and healthy otherwise. From contact with other Hodgkin's patients, Missy's story of mis-diagnosis is not unusual. Hodgkin's Disease is quite rare. The location of Missy's tumor, behind her breast bone, made it impossible for the physicians to see or feel.
On Monday, September 23, 2002, Missy began to run a high fever and decided to go to the emergency room of Floyd Medical Center in Rome, Georgia. She told the emergency room doctor that she kept getting sick, to please find out what was wrong with her. An x-ray and then a CT scan were done and finally someone in the medical profession realized that Missy needed some real help, not just another prescription for antibiotics.
The next morning Missy underwent a biopsy in order to determine what was causing the softball size mass shown by the CT scan. This turned out to be major surgery. The surgeons said that from her symptoms, it appeared that she was suffering from some type of lymphoma. Lab results of the biopsy would acertain what was causing the mass.
Missy's first visit with her first oncologist, Dr. McCormick, was in mid October. (They gave her a little time to recover from the biopsy.) This was when we found out that the diagnosis was definitely Hodgkin's Lymphoma. Her diagnosis was Hodgkin's Lymphoma nodular sclerosis Stage I B, bulky disease. We felt relief once we knew. I had looked up information on lymphoma and found out that Hodgkin's is more treatable than non-Hodgkin's. Dr. McCormick assured us that Missy could be cured because Hodgkin's is so treatable.
On October 18, 2002 Missy received her first ABVD chemo treatment. Missy endured 6 cycles of ABVD chemo treatments, 12 individual treatments in all. (A cycle of ABVD chemotherapy is 4 weeks and consists of 2 treatments of chemo, 2 weeks apart, unless the patient's white count drops and treatment has to be delayed.)
Her last ABVD treatment was on Friday, April 11, 2003. Prior to her last treatment, Dr. McCormick had discussed with Missy the option of whether to do radiation treatments or not. Missy chose to have radiation. She said, "I don't want to be sitting here [on this examining table] again a year from now."
The radiation treatments began on May 21 and ended on June 18, 2003. Missy celebrated her 25th birthday on June 6, during the time of her radiation treatments. She had 20 treatments in all. Before and during her radiation treatments, she worked out at the YMCA in Rome. At first, she could hardly move the treadmill. Before long, she was doing 2 miles a day on a treadmill and swimming in the Y pool. Things appeared to be fine during her checkup. Missy was excited about getting well and having her life get back to normal. She finally had the energy to do the things that she missed doing for so many months.
As she had planned throughout her chemo treatments, Missy enrolled at Coosa Valley Tech in Rome and started the Fall semester in September 2003, a year past her diagnosis. She planned to get on with her life by pursuing a degree in nursing. She would ease back into school life, by taking only 2 classes at first, anatomy and psychology. She really enjoyed her classes and making new friendships at school, but before long, she began to notice symptoms that later, as she looked back, were signs of the Hodgkin's rearing its ugly head again. She had some off and on fevers, a skin infection, and some pain in her side.
On October 6, she saw Dr. McCormick and told him about her concerns. He told her, "Let's not jump to conclusions. We'll do some tests." For three days, she had tests done. On October 10, when she saw Dr. McCormick again, he had bad news. The Hodgkin's was back. Maybe it had never been gone. He called it "progressive disease." He said that she would need a bone marrow transplant because she had gone through the standard treatment, plus radiation, and the disease had not been stopped.
He advised that she go to a medical university hospital setting and that she return home to South Carolina. Missy choose the Medical University of South Carolina Hospital in Charleston, to be nearer her maternal family in her hometown of Sumter, South Carolina and because MUSC is a major cancer center with a good reputation. They have been doing bone marrow transplants since 1987.
When folks would find out about Missy's illness, many would say something about Hodgkin's being a "good cancer" to have. Many people say that if you are going to get cancer, you're lucky if it's Hodgkin's. The treatments aren't a piece of cake, but the cure rate for Hodgkin's is high, especially for those diagnosed at Stage I B as Missy was. I suppose that people figure that if you have cancer, Hodgkin's is the one to have because it is treatable. About 85% of the 7,000 or so folks diagnosed with Hodgkin's in the United States each year are "cured." Missy was in the 15% group of folks who need more aggressive treatment. She turned out to be part of an even smaller percentage of Hodgkin's patients needing a bone marrow or stem cell transplant.
What everyone needs to understand is that every cancer diagnosis is difficult, physically and emotionally. There is nothing, nothing at all lucky about having any cancer. When you say to a Hodgkin's patient, "You're lucky that you have Hodgkin's," it's not something that they need or want to hear. When someone is diagnosed with a life threatening disease, their whole life changes, as well as the lives of everyone who loves them. Afterwards you, your family, and the friends who stick by you, always think in terms of before the cancer, during the cancer, and how things will be after the cancer. Once it was determined that Missy's disease was progressive, she was Stage III B. The only choice was to have a transplant. She wasn't "lucky" to have Hodgkin's.
Missy's first visit with her new doctor, Dr. Robert K. Stuart, was on October 28, 2003. Before lunch that day, he had admitted her to the Medical University of South Carolina Hospital. Initially, Missy's autologous (self donated) stem cell transplant was planned for early January of 2004. Missy became sick with pneumonia and the transplant was delayed and planned again for February. Missy became sick with pneumonia and c. dif. and ended up spending 22 days of the 28 days in February in the hospital, 4 of those days in ICU. Next, the transplant was planned for March. Yet another setback occurred, a bacterial infection this time. Finally, the high dose chemo treatments began in April and Missy's stem cell transplant took place on May 4, 2004.
On May 19, 2004 at 7:35 A.M., just 15 days after transplant, we lost our beloved Missy to pneumonia. She would have been 26 years old in just 18 days. Battle scarred and valiant, she gently left this world on a beautiful spring morning at the Medical University of South Carolina in Charleston. Our Carolina Girl turned Hodgkin's Warrior, flew from our lives to become our Carolina Angel.
My daughter, Melissa Leigh Sutton, Missy battled Hodgkins Lymphoma for 19 months. http://www.palmettostateroots.org/missy