The Fungus Among Us

Fungus, Failure, and the Fight to Keep Living

I know what they’ll say when I die: “She fought for so long. She’s no longer in pain.” And they’ll be right—I have fought my whole life. But I still want more. I’m not ready.

In January, I’m going back to NIH to test if I’ve become resistant to the antifungal I’ve been on. I’ve spent 30 years on antifungals because my genetic mutation and immune deficiency mean my body doesn’t fight fungus at all. If the fungus breaks through, I get severely sick, often requiring long hospitalizations.

In October 2022, we did resistance testing on a biopsy from my esophagus. The results were terrifying: I was resistant to every oral antifungal except one. I’m still on that last option, but I’ve been having breakthrough lesions and esophagitis. It hasn’t been bad enough for a hospital stay yet—though my grief probably isn’t helping—but it scares me.

That’s why we tried the bone marrow transplant at Sloan Kettering in June 2023. My doctors said we were running out of time and options.

But the transplant trial failed. After the immune therapy, I spent three days nearly comatose in the neurological ICU. When I finally woke up, I didn’t know where I was.

It was too dangerous to go forward with chemotherapy and the transplant, though the doctors were willing to try. My dad wasn’t. He begged me to stop.

He pleaded with me. He was practically on his knees. He even yelled at the doctor running the trial, accusing him of treating me like a guinea pig. I had never seen my dad like that before, and neither had my mom. He wasn’t the same afterward.

I left Sloan Kettering that June knowing the only potential cure had just evaporated.

And then, ten months later, my dad died.

I can’t explain what his loss has done to me. My cortisol levels skyrocketed, I gained weight, and I could barely get out of bed. I’ve been fighting virus after virus. In September, I got pneumonia—the same thing that killed my healthy, vibrant dad. In October, I ended up in the ICU while on vacation in Los Angeles.

And yet, I’ve been able to find stability in small ways. I babysit a couple of days a week, started dating again, and even began walking 2–3 miles a day.

I’m okay. I haven’t written my book yet! So I’m not worried. I’ve never really been one to worry. I know when I know. I knew when I had a pulmonary embolism. I knew when the lump in my neck during college was cancer. I knew when I had staph and strep in my blood that I needed to go to the ER, even when I had no symptoms beyond a gut feeling. I know I’m meant for more.

But if January’s resistance tests confirm that I’ve run out of oral medications, I’ll have to start Micafungin IV infusions six days a week. Medicare only covers infusions at the hospital, so I’ll spend three hours a day at the infusion center. I’ve done it before. It inflames my liver and bums me out. I’m also running out of access points for IV lines. I’m no longer a candidate for a port, and I’m too immune-compromised for a Hickman line. That leaves PICC lines, which are temporary at best—a band-aid solution.

It’s hard to face this, especially while we’re all still grieving. My mom is adjusting to being my only caretaker. I have nightmares every night about losing her because, if I lose her, I have no one. She doesn’t want to relive the trauma of the failed transplant—18 months of testing, appointments, and city trips. I don’t blame her.

One step at a time. In January, we’ll know more. For now, we just take it day by day.

My doctor has encouraged me to reach out to Sloan Kettering about their ongoing trial. They’ve had incredible success with kids with my mutation. Adults? Only a few have done well, but every adult in the trial has survived. Still, I’m not ready to send that MyChart message to the doctor my dad yelled at—not yet.

The psychic I saw recently told me the same thing a psychic told me seven years ago: I will survive. I will write a book. I will show others the way.

And I believe that’s true.