A diagnosis of the disease in her early forties had a seismic impact on Jen Moog’s life. Now, 7 years later, she wants to educate about the disease and remind others to listen to their bodies.
In her early forties, Jen Moog just kept getting sick. She had bronchitis several times, sinus infections, and, at one point, even pneumonia. She thought it was weird (and a little concerning). But when doctors didn’t initially find anything wrong, she chalked it up to running herself ragged between her caring for her three young kids and giving maximum effort to her demanding job as HR director at Johnson & Johnson—both of which she loved and found incredibly fulfilling. “I might leave J&J at 5 p.m. or 6 p.m., come home, put the kids to bed, and get back on emails. I was just always going,” Moog recalls. “I was sick a lot, but I assumed that it was because my kids were little—4, 6, and 7, at the time—and they are germ monsters when they’re young.”
In the fall of 2014, she woke up with a strange infection under her eye. Her doctor prescribed antibiotic drops, but when she spent a Saturday volunteering at her kids’ school with a huge pair of sunglasses covering her eyes, she could feel it getting progressively worse. The next morning, she woke up feeling horrible, so her husband, Brian, decided it was time to take her to the Capital Health emergency room. “I remember vividly my husband and my three kids, rolling up in the minivan to the front of the ER and dropping me off,” says Moog, who lives in Lawrenceville, NJ. “My husband had to take the kids to the soccer field because he coached two of their teams. I think he thought they were going to figure out why the drops weren’t working, give me something to fix my eye, and send me on my way.”
Instead, she was admitted to the hospital and her life took a turn.
Zebras, Not Horses
Capital Health doctors explained that they admitted Moog because initial blood tests showed worrying signs. She was severely anemic (below normal healthy red blood cells) and hypercalcemic (above normal calcium levels). The doctors told her she might have multiple myeloma, which Moog, who is now 48, had never heard of. While she didn’t match the profile of a more typical multiple myeloma patient (over 65, African-American, male, and overweight), they wanted more tests. The doctors sent her for x-rays because a common sign of the disease is lesions on the bones. However, when the x-rays came back, the bones seemed intact. “I remember texting my husband and saying the x-ray looks good. I told him that it didn’t completely rule out myeloma, but it was a good sign,” Moog says. “That’s literally just the last thing that I remember. Within a few hours the cold and the eye infection I thought I had—all that sort of spiraled.”
From there, Moog’s condition plummeted. Her kidneys began to shut down, and she was sent to the Intensive Care Unit (ICU), where they induced a coma. “They wound up putting me on a breathing tube, a feeding tube. I had dialysis twice because my kidneys were shutting down, and they took a bone marrow biopsy.”
While Moog was unconscious, the doctors also ran test after test to get to the bottom of why Moog’s condition was rapidly declining, but each one came back negative. “Each time the tests would come back negative, my husband was happy—he thought it was good news. After the third time, they said to him, ‘I know it seems like good news, but there’s something seriously wrong with your wife and we can’t figure out what it is.’”
Finally, results from two tests—the bone biopsy and a cytogenetic test to show chromosomal abnormalities—allowed the doctors to determine that multiple myeloma was the correct diagnosis. When Moog was conscious again (and after a night’s sleep), her husband reluctantly shared the diagnosis. Then doctors explained in more detail what she was up against. “They explained that it was a blood cancer for which there was no cure,” Moog recalls. “It affects your bones, your kidneys, and your entire immune system.”
Doctors told her that multiple myeloma is incurable but extremely treatable—she’d need to start chemotherapy right away and, eventually, she would need a stem cell transplant. From there, she’d need to manage the disease throughout her life with a variety of medical interventions and medication. Despite the seriousness of the diagnosis, Moog is grateful they got it right. “A lot of times multiple myeloma is misdiagnosed. People assume it’s a sports injury or arthritis. In many cases, they have this bone pain, and they ignore it off for a long time, and they get misdiagnosed for that reason. I just assumed I had a bad immune system,” she explains. “There’s an expression in medicine: When you hear hoofbeats, you think horses, not zebras. But doctors at Capital Health saw a zebra, not a horse. They realized it was not just a mom working too hard, burning the candle at both ends. There was something that wasn’t right, and they went deeper.”
There’s an expression in medicine: When you hear hoofbeats, you think horses, not zebras. But the doctors at Capital Health saw a zebra, not a horse. They realized it was not just a mom working too hard, burning the candle at both ends. There was something that wasn’t right, and they went deeper.
Different for Everyone
Although multiple myeloma symptoms vary from person to person, and the early stages of multiple myeloma may present no visible symptoms at all, here are common signs to know, according to the Multiple Myeloma Foundation.
Bone damage: About 85 percent of people with multiple myeloma have some type of bone damage (osteolytic lesions) or loss (osteoporosis). The most commonly affected areas are the spine, pelvis, and rib cage.
Impaired kidney function: When initially diagnosed, about 20 percent to 40 percent of patients with multiple myeloma will have some amount of kidney failure also known as renal impairment.
Impaired immune function: Myeloma is a disease of an immune system cell (the plasma cell), so it can impact the entire immune system.
Anemia: A condition in which you lack enough red blood cells to carry enough oxygen throughout the body.
Hypercalcemia: This condition, in which the calcium level in your blood is above normal, can lead to weakened bones.
Fatigue: Low red blood cell counts, known as anemia, cause fatigue. A low white blood cell count can lead to frequent infections, which also contributes to fatigue.
Battle for Life
Moog was first admitted to the hospital on October 19, 2014, and was eventually diagnosed 5 days later. It was a week later before she felt well enough to talk to her kids, who hadn’t seen her since they dropped her at the ER. “We didn’t want to FaceTime them because I had all these tubes, so we waited until everything was out and I looked a little better. The first thing they said to me was, ‘Will you be home for Halloween?’ which was later that week. I said to the doctor, ‘What do I need to do to get home?’ He said that just couldn’t happen. I said, ‘You don’t understand, I have three little kids. Halloween is like their Super Bowl. I have to get home.’”
To get a green light from the doctor to leave the ICU and head home, Moog had to satisfy a long list of to-dos, including getting her white blood cell count up, being able to walk the hallways, showing improved lung capacity, getting her temperature down, and more. But she did it. “I finally got home at 5 p.m. on Halloween. The kids came home, and they were scared at first because I was weak, and my husband scared the bejesus out of them, because he was like, ‘Don’t touch her!’ ‘Be careful!’ and ‘Be gentle!’ They went trick-or-treating, and I collapsed on the couch. The next morning we sat them down to explain that I had multiple myeloma.”
While telling the kids was emotionally taxing, Moog knew she needed them to understand what was happening because it would fortify her resolve to get through the next weeks and months, which the doctors warned would be grueling. Her medical team planned to attack the disease aggressively, especially because Moog was so young (42 at the time). There would be multiple rounds of chemotherapy. She’d have to undergo another bone marrow biopsy and induction therapy to prepare for the stem cell transplant. But the good news was that Moog responded well to the treatments and therapies, and her numbers improved very quickly. After her stem cell surgery in February 2015, Moog lost her hair, which was yet another painful blow.
But by the end of April, she went back at work. “I wasn’t prepared to say, I’m 42 years old and I can’t work anymore,” she says. But as understanding as her employer was, and even though she fully understood her diagnosis, Moog didn’t know how to work at a slower pace. “I didn’t know how to do it any differently than I had. So I was even working from a chemo chair. I would go to treatment once a week, and I’d sit in the chair and take work calls instead of taking the day off. Before I knew it, I was back to where I started,” she recalls. “I got really sick three times the first year that I was back to work. I was on a business trip to California, and I got a 104-degree fever. I came back early, and that’s when I realized I had to leave my job.”
Since the summer of 2016, Moog has been more focused on her own health and taking care of her family. With some soul-searching, she realized that while she deeply missed her career, she felt clear that she needed to stay healthy for herself, her kids, and her husband. “I would never want to look back on those years and think, I could’ve been with my family instead of working when I didn’t need to work, and I was getting sick all the time anyhow.”
For years, Moog held her breath each month while she waited for her blood work to come back clean. While there are many ominous signs doctors look out for, the most important one is a monoclonal spike (M spike), which, when present, indicates there are too many bad proteins in the blood. “For 39 months in a row, I think, it was zero. And then Valentine’s Day of 2019, my doctor called and said, ‘We need to do something different. Something’s not working.’”
The something different ended up meaning a switch to a new medication called Darzalex, which Moog calls “the big guns.” She was hesitant at first because she didn’t want to pull the trigger on it too soon and then not have an alternative down the line. “The doctor said to me, ‘If you have Michael Jordan on the bench, why would you save him for later in the game? Why doesn’t he come out now, when you need him?’”
The new medication was incredibly hard on the body at first, but she only needs the injection once a month, so it’s less onerous than her previous medical regimen. The freedom from the monthly blood tests and the anxiety they caused is giving Moog space to invest herself in other things, especially advocacy work. She was chosen as the 2019 Woman of the Year for the Leukemia & Lymphoma Society, and she raised $131,000 in 10 weeks for an event called Light the Night, which goes to blood cancer research.
While Moog feels healthy for the most part, and her last blood work in October looked good, she knows things can change at any time. But she feels grateful for that eye infection all those years ago, because she knows without that, a diagnosis of “nothing seriously wrong” could have kept her from the treatment that ultimately saved her life. “I need to feel like I can make some kind of sense of why this happened,” Moog says. “And that could mean just one person hearing about my symptoms that I ignored for months and going to get their own symptoms checked out.”