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My Mesothelioma Story | Part 1: Symptoms Leading to My Cancer Diagnosis


A photo of pleural mesothelioma survivor Heather Von St. James

I’d never felt so tired. I could hardly function, but that is the life of a new mom, right? That’s what I told myself anyway.

This fatigue was beyond anything I’d ever experienced. When I think back to those first few months of my baby’s life, I remember that fatigue. In hindsight, it wasn’t just postpartum symptoms, as I had thought. I had something much more wrong with me.

The First Signs There Was a Problem

Newly diagnosed patients often ask me how my doctor figured out it was mesothelioma. Thinking back, I remember my fatigue was the number one symptom. Beyond just the fatigue, though, I had other puzzling symptoms.

Major Weight Loss

I had been losing so much weight — about 5 to 7 pounds a week in the beginning. I realize now that was also a telltale sign.

When I was pregnant, I had only gained 5 pounds. My baby was growing and hitting all the targets during the pregnancy, so my obstetrician-gynecologist (OB-GYN) was not at all worried. We just chalked it up to healthier eating and increased activity.

By the time my baby turned one month old, I had lost close to 30 pounds.

Strange Low-Grade Fever

Then, every evening around 6 p.m., a low-grade fever spiked. It usually hit 100 – 100.5 degrees. They weren’t serious, but I didn’t feel right. I would take some Tylenol®, and it would go away until the next evening at the same time.

I called my doctor, and they just told me to keep an eye on it. If the fevers got worse, I was supposed to get an appointment and have some tests. But it never got worse.

Flu-like Symptoms

While the fatigue continued to plague me, I also had no appetite. Then suddenly, it felt like a truck parked on my chest. I could not breathe well. I thought maybe I had the flu.

By mid-October, I had never felt so sick. One day when I went to bed, I woke up in a pool of sweat. I was drenched. I had to change my pajamas and pillow and put a towel down to try and go back to sleep. But it kept happening. I thought either my fever had broken, or my hormones were seriously out of whack. I stayed in bed most of the weekend, only getting up to feed my baby.

By the end of October, I knew that something was seriously wrong. I sent my sister a picture my husband took of me and my baby, sleeping curled up on the couch. She took one look and called me in a panic. She said I looked dead in the photo and to call my doctor right away.

A Visit With the Doctor

I made an appointment for the soonest I could get in. My doctor, Dr. Flink, took one look at me and ordered blood work.

We found that my hemoglobin was dangerously low, close to levels needing a transfusion. My doctor prescribed me some iron supplements and told me to call back if I didn’t feel any better in a week.

I was back in my doctor’s office a week later, where he ordered more extensive blood work. After the results came back, he sent me for a chest X-ray. He worried I had contracted a heart virus some women get after giving birth. But the X-rays showed fluid gathering around my left lung.

His face was etched with worry. He excused himself from the room to call and schedule a thoracentesis appointment at the hospital.

A Trip to the Hospital

The next thing I knew, I was wearing a gown in a hospital room. A pulmonologist was sticking a needle in my back to drain more than a liter of fluid off my lung.

He mentioned that the fluid was an odd color. Usually, it is straw colored, but mine was the color of strong tea. After the fluid was drained, I went to get a CT scan of my chest to see what was causing the fluid buildup.

For the CT scan, they gave me an intravenous (IV) contrast fluid. This substance helps show differences in tissue.

It was all so surreal. Until I’d had my baby, I’d never been in the hospital—not even the emergency room. Now, I was walking down the endless, stark hallway for a CT scan. It felt like a dream, lying on the hard table, draped with a heated blanket.

Waiting

When I was done with the CT, they put me in a private waiting room meant to be a comfortable place to wait for bad news. But, the dim light emitted from the fluorescent lamps made the room bleak and depressing.

I had a million things running through my mind. Cancer was at the top.

Dr. Flink arrived about 15 minutes later and delivered the news I did not want to hear: There was a mass causing the fluid buildup. Until it was biopsied, we’d have no way of knowing what I was up against.

My day of medical appointments turned into two. I was back at that same hospital the next day for a CT-assisted needle biopsy.

Then the hard part started. The waiting.

Getting the News

After a week of waiting, my doctor called to tell me he had sent the biopsy to Mayo Clinic for a second opinion. In my heart, I knew this was not a good sign. I assumed I had lung cancer, having smoked for years before quitting when I wanted to get pregnant.

I went over the last three months, taking stock of my health and how quickly it had degraded. I had to take a leave of absence from my job because I was too sick to work. It took all my energy just to care for my baby.

I got the call on Friday of the next week. Dr. Flink wanted both my husband and I to come in the following Monday to discuss what was going on.

On Monday, November 21, 2005, my life as I knew it was turned upside down. I was diagnosed with malignant pleural mesothelioma and told I had just 15 months to live. But that was just the beginning of my story.