In 2018, I was 27 and in the prime of my life, running my own entertainment PR firm in Atlanta. Things were going great professionally, but I just wasn’t feeling well. I was extremely tired all the time, my chest felt weird, and I had a deep, lingering cough. But I was young and felt invincible, so I just kept brushing it all off.
Then one day while I was on the phone with a friend, she said something funny and I started to laugh—but all of a sudden I couldn’t breathe. There was a sharp pain in my left side. My friend said, “You need to go to the hospital!” I said, “Oh, I’ll just lie down until I feel better,” but she insisted. So I called my mom and told her to meet me at the ER.
When I got to the hospital, they took an X-ray and saw that there was a large mass in the front of my chest. They asked if I had been in an accident recently. I actually had been in a minor car crash earlier that year and my chest had hit the steering wheel. They said they thought the mass was related to that injury, gave me cough medicine, and sent me home.
Feeling even worse
Two days later, I was running a 103°F fever, so I went back to the hospital. At that point, they admitted me and began running tests. They asked if I had experienced any night sweats, and I remembered that recently while I had been staying with friends in St. Louis I had woken up drenched in sweat. I’d thought maybe they hadn’t run their air conditioner high enough.
The doctor decided to biopsy the mass in my chest. The initial plan was to do it by running a scope down my throat, but I was afraid of scarring that would affect my voice, so I asked the medical staff if they could do it another way, and they agreed to go through my abdomen instead.
It took forever to get the results, and my symptoms were getting worse, so I was in and out of the hospital for the next two weeks while we waited for news. I started getting really worried and prayed a lot, because I had no idea what was going on with my body.
Then, on July 2, as I was there with my mother by my side, the doctor told me I had Hodgkin lymphoma. I had never heard of it before, so I looked at my mom and she explained to me that it was a form of cancer affecting the lymphatic system, which helps move fluids around our bodies and protects us from infection. Then the doctor told me that my cancer was stage IV, which meant it had spread—the mass not only was in the mediastinal lymph nodes in my chest but extended all the way around my back.
I was in complete shock. I wondered if I would be able to have children. I had to process what this meant for my future—if I even had a future! But the oncology team explained right away that this type of cancer could be cured.
Thankful for family
Before she retired, my grandmother had been a nurse at Barnes-Jewish Hospital in St. Louis, so my mom quickly decided that I should get my treatment there. She packed everything up, my family put me in a wheelchair (by then I was too weak to walk around an airport), and we flew out that day. I didn’t have a chance to say goodbye to any of my friends.
At Barnes-Jewish, the oncology team gave me a much better idea of what was going on. They were very optimistic and said that if I started treatment right away, we would be able to stop the cancer. They told me I would need to do 12 rounds of chemotherapy, having a session twice a month for six months.
The support of friends like Chanel helped Lindsey recover.
I’m from St. Louis, and it was so great to be surrounded by family members as I went through this. They made sure I got to all my appointments and took all my meds, and when they saw that I wasn’t eating, they reminded me to drink my Ensure. The chemo was really rough on my body, in many ways. I cut my shoulder-length hair short when I started the treatment, but so much came out that I eventually had to shave it all off.
I was exhausted all the time and developed rashes and thrush and a blood clot in my leg from the chemo, but amazingly, I was able to keep my business going remotely (though I had to cut back on work at times). At one point, however, I was in so much visible pain as I was trying to walk up the steps to my house that a neighbor rushed over and said, “Hey, you don’t know me very well, but I am going to pick you up and carry you inside.”
Making it through
I had my final treatment on December 13, 2018, and got to ring the bell in the cancer center in celebration with my family and my best friend all there with me. But it took another year or two before I felt like myself again. During chemo, I was so focused on getting through treatment that I didn’t take time to emotionally process what I was going through.
Then one night about a year later, I was out with friends and suddenly it all hit me and I just burst into tears. After that I started seeing a therapist to talk about the grief I was feeling as a survivor. I finally started to feel as if I could breathe again as simply a woman and not have this diagnosis define me. I’ve now been cancer-free for seven years, and I’m doing amazingly well. Looking back, I wish I had gone to the doctor sooner, but when you’re young you don’t think anything bad can happen to you. I’m excited about my future, and I know that if I got through cancer, I can get through anything and come out of it better and wiser and stronger.
The 411: Hodgkin Lymphoma
Named after the 19th-century scientist who first described abnormal masses in the lymph nodes, Hodgkin lymphoma is a cancer of the lymphatic system. About 10% of lymphoma diagnoses are categorized as Hodgkin—the other 90% are known as non-Hodgkin lymphoma.
The lymphatic system, which is in charge of fighting infection, is made up of the spleen, bone marrow, and nodes throughout the body (the ones that can swell when you have a virus). “This system is the army for your body, and also the waste-disposal system,” says Alyssa Rieber, M.D., who treats Hodgkin lymphoma at Texas Oncology in Fredericksburg, TX, and is a 28-year survivor of the disease. “It gets rid of cells that are growing in places they shouldn’t be.”
With Hodgkin lymphoma, the cancer is in cells called Reed-Sternberg cells. “It’s for the most part a slow-moving cancer, and it is more responsive to treatment than other lymphatic cancers,” Dr. Rieber explains.
Who is at risk?
Unlike non-Hodgkin, which is usually diagnosed in people over 60, Hodgkin hits those who are younger. “It’s most common in people in their 20s and 30s, and then there is another peak between 55 and 60,” says Dr. Rieber. People with compromised immune systems, a previous infection with the Epstein-Barr virus, or a family history of lymphoma may be at greater risk.
The symptoms
The most common early symptom of Hodgkin lymphoma is swollen lymph nodes in the neck or underarms that don’t get better, says Dr. Rieber. “There are also lymph nodes in the center of the chest, called the mediastinum, and if those are affected you can have trouble breathing, chest pain, swelling, and blood clots,” she adds. Other symptoms may include severe night sweats, weight loss, exhaustion, fever and chills, and itchy skin.
Treatments
Patients usually have chemotherapy and/or radiation, though the course depends on the stage and the specific case, says Dr. Rieber. In addition, several new treatments have been developed in recent years that provide more targeted therapy for Hodgkin patients: One is the monoclonal antibody Brentuximab, which targets a protein called CD30 on the outside of Hodgkin lymphoma cells. Newer forms of immunotherapy are also showing great responses in treating the disease.
The prognosis for patients with Hodgkin lymphoma is usually excellent, says Dr. Rieber, who points out that the five-year survival rate for cases caught in the early stages is around 95% and that even for cases caught in the later stages it is over 80%. “Most patients are able to move forward with the expectation of being cancer-free,” she says.
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