So, it wasn’t cancer. What was it? We will get there, but I want to start at the very beginning…..
It started with a cough, or at least that’s when I think it started. Looking back, I’m not so sure. Anyway, in April 2023, I started coughing. At first I thought it was my annual sinus infection, and then I thought it was allergies. And then I took students to Japan, and I thought it was allergies to the trees in Akita or the stale city air of Tokyo. Then I blamed jet lag and my busy schedule. Then the new school year started, and the cough just became part of my existence.
In October, after I’d been sleeping in a chair for six months, I finally went to the doctor. I asked for a chest x-ray and got a GI referral. The chest x-ray was clear. The GI testing showed I had poor mortality, severe esophageal GERD, and Barrett’s esophagus, so I changed my diet and started some medications. I got a second opinion.
The diet changes and new med helped except when I got even a little bit too tired or caught the slightest cold. Then I was right back at the beginning. My voice started to change. I lost vocal range. Looking back, I know the voice change had started much earlier; when we took students to karaoke in Japan in May, I could no longer sing my standard karaoke repertoire. Like most women, I assumed it was age, exhaustion, menopause.
Still, I went to an ENT and then a different ENT and learned I had paradoxical vocal cords, vocal cord nodules, and an irritable larynx. I did speech therapy to keep the cough at bay. And, it worked until it didn’t. The speech therapist told me it was a mystery. I stopped singing.
Maybe it is sleep apnea, my doctor suggested, so I saw a pulmonologist and did a sleep study. The results were normal. The pulmonologist told me he couldn’t help me. I asked the GI doctor whether my esophagus issues caused my throat issues and the ENT whether my throat issues somehow caused my esophagus issues. I was desperate to stop coughing. The GI told me to consult with the ENT and the ENT told me to consult with the GI. I asked where the ENT’s specialization ended and the GI specialization began. No one answered that question.
By this time, three years have passed. What started not long after I lost my dad continued until a year had passed since losing my mom. The consensus was that the cough was just a cough, even though it took my breath away and forced me to gasp for air. Even though it made it hard to talk for too long, hard to teach. Even though I constantly carried a pocketful of mints and a huge cup of ice water and prayed I wouldn’t be overcome with a cough when I had to say something at a meeting.
The spring break after the first anniversary of Mom’s death, I decided to drive to Indiana for a time of rest and self reflection. Ten days or so before I was set to depart, my BP went nuts. It took longer than it should have to convince my doctor that something was up with my BP because it was mysteriously normal ONLY when I was in his office. He told me to get a new BP cuff. I did. The results were the same. I insisted on coming in and having my BP checked again and again, and finally he saw what I saw and put me on one then another and then a third medication. He ordered more testing.
I refused to let this stop me from going to Indiana because I knew I needed some time to reflect on losing both parents so close together. I backed off of the Clonidine because I knew it would make me too fatigued to drive. During the six hours it took me to get to Indiana, I resolved to let this trip be the catalyst for a change in perspective. I decided to try to let go of the some of the grief from all of the loss and all of the heartbreak—not only from losing my parents but from years of dealing with spine issues and special needs parenting. I decided to stop looking backwards and to start looking forward. Everyone has heartache and loss, I told myself. Time to get over myself.
Within 36 hours I was in the ER learning I had a large mass in my mediastinum. The ER doc could not emphasize enough that the likelihood of it being cancer was high. It was 2:30 in the morning. I was too tired for this kind of news.
As I tried to sleep (alone, in a hotel, far from home after just being told I probably have cancer), I berated myself. How could I have missed THAT? Why didn’t the SEVEN doctors I consulted look there? I was mad at them for not finding it, mad at myself for not somehow pushing harder. Then I learned how incredibly rare it is to develop a mass there, and I realized I couldn’t blame them for playing by the rules of probability. The chances of cancer of the thymus? One in a million.
