It was June 2015, and the whole thing had started as hot flashes and a headache at a friend's summer kick-off party. He must've put in some funky ingredients in the punch, I thought to myself after. Or maybe I just drank too much of it?
As the days went on the flashes turned into out-of-this-world, 104-105 degree fevers, followed by bed-drenching sweats, then full-on teeth-chattering shivers. I felt like a lobster reaching full boil, only to be transferred to a cryogenic chamber. This went on for almost two weeks. I dreaded the nights the most, when the fevers were at their worst. I couldn't sleep. I went to the emergency room once, where they diagnosed me with mono, and I was sent home to recover. A few days later, when I was starting to have trouble breathing, I decided I needed to pack a bag and head back to the hospital.
I picked up my iPhone and asked her how to spell it.
"It's called HLH." After that, all I heard was a string of multisyllabic words and acronyms.... Dexamethasone. Etoposide. CMV. BMT.
"We're going to start you on a high dose of steroids and an eight-week course of chemotherapy."
I clicked on the Wiki page for HLH and saw the words "rare," "life-threatening," and "mortality rate of 50%." She told me that it was not cancer, but it's treated with chemotherapy. So there was good news and bad news. I was happy to have an answer for what I had been going through, even if it was a rare disorder that was hard to pronounce. But chemo didn't exactly sound like a walk in the park.
My hematologist said she had only seen a handful of cases of HLH, but she had treated someone here at NYP/Weill Cornell Hospital recently, and he was recovering well. I was in good hands.
After three doses of chemo and 17 days in the hospital, I was allowed out. However, I was confined to my apartment since I was neutropenic, which l had learned meant my white blood count was really low. The numbers weren't increasing as quickly as the doctors hoped. I thought of myself as Bubble Boy in that episode of Seinfeld. My mom and boyfriend and friends took care of me, bringing me food and supplies from the outside world.
My hair fell out in clumps. I decided just to shave it all off, trying to beat it to the punch. (As a kid I hated having red hair. Gingers are the butt of so many jokes. But what was once one of my most defining characteristics was now in a pile on the floor.)
I had lost 20 pounds by the time I left the hospital. It hurt to sit down because I could feel my bones protruding. I didn't recognize myself in the mirror.
The physical side effects were tough on me, but the emotional side effects were also difficult: to be diagnosed with something that very few people have; to have a disorder that neither my primary care doctor nor my gastroenterologist had heard of; to run into friends and co-workers and attempt to explain why I had lost my hair.
When I try to tell people what happened to me, sometimes I mention Selena Gomez and how she came down with Lupus and had to disappear from the world for a while to get chemotherapy. (I knew this from reading US Weekly.) Basically, autoimmune diseases like Lupus and HLH require a reboot of the immune system. So while they're not cancer, often they behave like one, attacking parts of the body that your immune system is supposed to protect.
The problem with HLH is that it disguises itself as a regular infection, like mono. Behind the scenes, while you think you're recovering from your infection, HLH invades your organs until they give out. My liver and spleen were enlarged when I went into the ICU, and the HLH was beginning to affect my lungs.
Another way of trying to explain what I went through is in the fine print of prescription drug commercials on TV, like Humira, Remicade, or Synflex. "Side effects may include excessive sweating, fevers, headaches, tuberculosis, rare blood disorders, or death." The voiceover happens over footage of a very handsome, happy man walking through a field of daisies. So, unlike Lupus, HLH is tricky in that it's often a result of an infection caused by a medication prescribed for a pre-existing condition like Crohn's Disease. The medication I was on definitely helped me lead a functional life. But, while popping two seemingly innocent yellow pills a day, I had no idea what havoc it could be wreaking on my body inside. I didn't really want to think about the fine print.
The chances of having HLH are said to be 1.2 cases for every one million people. It was pretty miraculous that Cornell Hospital had seen two cases within the same summer. I asked the nurse if I could have the e-mail address of the guy who had recently been treated there. The one who was recovering well. I wrote to him with the subject "Your new HLH buddy." He wrote back and told me his story, which was remarkably similar to mine, given he was also on the same Crohn's medication. We traded stories of living in the cancer ward, our various roommates, and debated which was better, the hospital pizza or vegetable lasagna. He recommended a shampoo to help my hair grow back faster (still, it took its sweet time). Talking to Adam made me feel like I could beat HLH and reminded me that my situation was, hopefully, just temporary.
I soon discovered a great network of support on the "HLH Survivors and Angels" Facebook page. It is here that an annual 5K to Fight Histo benefit began to form a few years ago, as three friends trying to support a grieving mother who lost her 20-month old son to HLH. It has turned into an event of over 100 family and friends of HLH survivors and victims. The proceeds go toward educating health professionals about the disease, encouraging them to recognize the signs of HLH, which include high ferritin counts and abnormal liver/spleen tests. A year ago I could barely walk around the hospital unit without feeling weak. This month I'll be running (along with Adam) at the 5K fundraiser. Please consider donating to my team.
I'm a living reminder that you can recover from HLH, if it's caught early enough. At my yearly physical, my doctor said I'm healthier than ever. I've found a different medication to manage my stomach condition. While I may not be quite as blissfully happy as the guy smelling flowers in the Humira ad, I know how lucky I am to be alive.