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Inspirational Stories


Hodgkin lymphoma (HL)

In April 2023, I started to notice that I was having trouble breathing. I was a perfectly healthy 34-year-old woman who did kickboxing three times a week and was very physically active. I ended up going to a doctor who, for three months, misdiagnosed me with asthma and acid reflux. After about three visits to his office, I was crying to him, begging to be referred to a specialist. I really felt that there was something wrong with me that wasn't asthma. He looked at me and informed me that he wasn't going to refer me because I wasn't at the "proper level" that warranted a serious referral.

A few weeks later, I ended up having severe breathing issues, two incidents that warranted visits to the ER, and paramedics being brought to our house. One of these incidents happened when I was sleeping where I woke up grabbing at my husband and gasping for air. This didn't feel like asthma. After a weekend where I truly felt like I didn't recover from one of these episodes, I ended up going into the ER for treatment. It was there that my husband and I had to beg them to do a CT scan. They obliged while simultaneously shrugging it off, saying "Eh, we really don't think you need it but okay." I laid in the scanner for three minutes and felt like my throat was closing. It was one of the scariest moments of my life.

The results showed that there was an 8 cm mass crushing my windpipe. There was no way of knowing if it was cancerous or not without some kind of biopsy. My whole family came down. At that moment, I didn't know what was going to happen. The ER doctor told me that I would probably need to be intubated for four to six weeks. When I say that everyone's face in the room went ghostly white, I'm not exaggerating. My husband almost fell to the floor.

After 24 hours, a team informed me that I would be transferred from one hospital to another to get a tracheal stent placed in my airway. A normal trachea is open about 22 mm. Mine was open only 2 mm. If I hadn't gone to the ER when I did, I don't know what would have happened, and I shudder to think about it. Because the mass was in such a delicate place, I was not able to be put under anesthesia for the procedure. If I had been put under, the mass would have closed my airway completely, and I would have died. In the simplest terms, I was choked by doctors as they placed the stent in my airway. But it was a necessary evil. It kept me alive.

Next, I needed a biopsy. They took a needle biopsy (minimally invasive) which came back inconclusive but "suspicious for Hodgkin lymphoma" (HL). Two more needle biopsies followed, all inconclusive, yet still suspicious. The anxiety that I felt in these two months it took to get a diagnosis has been unmatched by anything I've ever felt in my life. We met with a thoracic surgeon who was planning to do a more invasive biopsy, but he had never worked with a patient who needed the use of a tracheal stent. In fact, most of the surgeons we had consulted with were too scared to operate on me. They were afraid that I would die in the procedure.

The placement of the stent, while necessary, caused me to cough and choke a bit. It's a foreign body, so my body reacted by giving me pneumonia. For weeks I coughed up mucus and brown sludge while running a fever. After a period of time, I felt like I wasn't getting better, and it necessitated another hospital stay. This ended up being the longest stay of the entire ordeal, 14 days. In those 14 days, I met a godsend of a surgeon who performed my biopsy, received an official diagnosis of stage 1E HL, had my face blow up with air as a side effect of the procedure (more to come on that later), and received my first chemotherapy infusion.

Now, remember what I said about my face blowing up with air? Well, the surgeon thought that they had accidentally caused a hole somewhere in my airway during the procedure. This is a risk of procedures like bronchoscopies. Unfortunately, this wasn't the case. In October, I had the stent removed as the tumor had already begun to shrink significantly due to a combination of the first chemo sessions, the biopsy, and steroids. Within a few hours post-stent removal, I started coughing. Something was wrong. I couldn't swallow anything without feeling off. A trip to the ER later revealed that the stent had created something called a fistula (i.e., a hole between two tubes in the body). My fistula was between my esophagus and trachea which means that everything I swallowed was going into my lungs.

This fistula necessitated the use of a feeding tube, first through the nose (which was removed after 10 days) and then one through the stomach. A repair procedure was planned but could not be done until after I finished chemotherapy. My world was crushed in that moment. Through every holiday, anniversary, and birthday, I was unable to eat and drink, all as I continued to undergo chemotherapy. I felt more defeated than I've ever been. But with every milestone passed, every moment became sweeter.

On January 11 at 11:11 a.m. (no, seriously), I received the results of my PET scan informing me that I was in remission and completely cancer-free. I got the best possible score on my scan. A few weeks later, my surgeon ― along with her incredible team ― repaired my airway. As of today, I took my first sip of water, and I am finally on my way to being able to have a normal diet again.

It's been hard to distill this down into a few paragraphs, and it's a story that I'm still learning to tell. But I know that I'm walking away from this as a stronger person than I've ever been. I still have a long way to go with my recovery, but I'm getting there.

Hodgkin lymphoma (HL)