Cryptogenic Pneumonia…You cannot make this Sh*&t Up

Maybe it’s written in my lucky stars, or maybe life simply isn’t always fair.

About two weeks before our trip to the Dominican Republic, I developed a cough. No fever. No congestion. No other symptoms. Just a lingering cough that slowly became more annoying every day.

After about 10 days of dealing with it, I finally went to see my primary care doctor. She listened to my lungs, said everything sounded clear, and told me to take Mucinex twice a day until it resolved or come back if it was still happening after six weeks.

If you know me, you know I rarely take conventional medications unless absolutely necessary.

I was raised around homeopathy, natural remedies, and the belief that if you nourish your body properly, it is capable of incredible healing. There’s honestly a dark humor to that now because despite living a mostly clean and organic lifestyle, cancer still found me.

At that point, though, I was desperate for relief, so I took the Mucinex exactly as prescribed.

Nothing changed.

The cough stayed persistent and annoying.

Oddly enough, while we were in the humidity of the Dominican Republic, it improved significantly. But the moment I returned to Colorado, it came right back, worse than before.

I waited out the six weeks like they told me to.

Then one morning, I woke up struggling to take a deep breath.

That immediately scared me.

I went back to the doctor and had a chest X ray done, which showed nodules throughout my lungs.

Unfortunately, because of my medical history, doctors can never completely rule out cancer. The nodules also didn’t appear typical for standard pneumonia, which made everything even more unsettling.

Reading radiology reports is honestly terrifying, especially when phrases like “recommend CT scan” start appearing in bold medical language.

At that point, I was officially spiraling.

The only person I truly wanted to speak to was my oncologist.

Even though Dr. Embry-Schubert is a gynecologic oncologist, she knows my history and understands the anxiety I carry surrounding all of this. Her reassurance has always meant so much to me.

Thankfully, because she is the chief of her department, she was able to fast track my CT scan. She told me she personally believed this looked more like an infection, but agreed we absolutely needed imaging to be safe.

While we waited for the CT scan, my PCP prescribed antibiotics.

The CT scan was scheduled for the following Monday.

By that point, the antibiotics had done absolutely nothing.

In fact, I felt worse.

I was exhausted to the point where lifting my arms felt difficult, and I had started developing chest pain as well.

When the CT results finally came through, I at least had some answers.

The scan suggested multifocal organizing pneumonia, also known as cryptogenic organizing pneumonia, but it also could not rule out metastatic cancer.

That sentence alone was enough to stop my heart.

The radiologist recommended repeating another CT scan in three months, while my oncologist encouraged me to see a pulmonologist.

At this point, I genuinely started joking that by age 50 I might meet every specialty doctor in existence 🙃

Thankfully, I was able to get into a pulmonologist the following week.

In the meantime, I was started on a low dose of prednisone.

Almost immediately, the prednisone felt noticeably different from the antibiotics. For the first time, it actually seemed like something was helping my body respond.

I was desperate to feel better before Victor arrived. I didn’t want another medical issue stealing emotional energy away from such an important chapter of our lives.

My pulmonology appointment ended up being on Tuesday the 21st.

Ironically, that same day our gestational carrier ended up in the ER with contractions, and I was also heading to the airport for Nevada.

Talk about stress levels.

I walked into the pulmonologist’s office and saw my CT scans displayed across a giant screen. He explained that while the imaging strongly resembled cryptogenic organizing pneumonia, he could not completely rule out cancer without doing a biopsy.

He laid out all of my options:

Option A: Surgical lung biopsy.

Option B: Needle aspiration biopsy, which is less invasive but less accurate.

Option C: Treat this as cryptogenic organizing pneumonia with a higher prednisone dose, repeat the CT scan in two months, and determine whether the nodules shrink. If they improve, it would strongly support the pneumonia diagnosis rather than cancer.

After discussing everything thoroughly, we chose Option C based on his professional recommendation.

So what exactly is cryptogenic organizing pneumonia?

Most people are familiar with infectious pneumonia, where bacteria or viruses infect the lungs and antibiotics help treat the infection.

Cryptogenic organizing pneumonia is very different.

It’s a rare inflammatory condition where the immune system essentially behaves as though there is an infection even when there isn’t one. The body continues attacking the lungs unnecessarily, creating inflammation and nodules.

Prednisone works by suppressing that immune response so the lungs can calm down and heal.

The difficult part is that prednisone can’t simply be stopped abruptly because the immune system can rebound aggressively again. Instead, you have to slowly taper off the medication while monitoring symptoms carefully.

And of course, prednisone comes with its own lovely list of side effects:Headaches.Nausea.Mood swings.Irritability.Insomnia.

FUN 😫

The cause of cryptogenic organizing pneumonia is still largely unknown, and it’s considered relatively rare.

But honestly, I will gladly take this diagnosis over the alternative.

Once cancer touches your life, whether personally or through someone you love, it changes you forever. There’s a level of fear that quietly follows you into every future scan, every unexplained symptom, every doctor appointment.

You become painfully aware of how fragile life really is.

Thankfully, compared to what many people face, my cervical cancer journey was considered manageable. But even still, the yearly scans and constant monitoring are emotionally exhausting.

So when my CT scan included the words “possible metastatic disease,” it became very difficult not to spiral into fear.

But this is also where trust becomes important.

Trusting the doctors.Trusting the process.Trusting that if they truly believed this looked aggressively cancerous, they would not feel comfortable waiting several months while treating it conservatively with prednisone.

I’ve now been on the higher prednisone dose for about a week, and thankfully I do seem to be improving.

The cough has slowly started fading, which I hope is a very good sign.

My next CT scan is scheduled for January 15th, and my hope is that it brings reassuring news so I can fully focus on simply being present as a mom without another dark cloud hanging over my head.

Until then, I’m reminding myself to stay present.

To stay grounded.

To trust my body.

And to remember that fear and anxiety have never healed anything, but peace just might ❤️