Emotional whiplash

I have emotional whiplash. Two weeks ago, I had a routine pulmonary function test. The results were great – my numbers have held steady for the last year and are vastly better than when I was first diagnosed.

But then my pulmonologist (Dr. Vilensky) pulled up my CT scans from August and December 2025. He showed me that a nodule that measured 1cm in August had increased to 1.2cm in December. I was angry that my oncologist didn’t bring this up at my December appointment. Dr. Vilensky said he wanted me to have a CT scan done asap and that if the nodule had grown more, I should have a bronchoscopy (biopsy) to determine if the nodule is malignant, if Tagrisso isn’t working or working as well anymore, if it’s a new genetic mutation, etc. He reassured me that radiation is very effective option. I didn't show it, but I freaked out.

I called Leland, went back home, asked on the Tagrisso Facebook group whether others had experienced nodule growth without cancer reccurrence, and texted a few friends with my news. Within the hour I got called back to the hospital for the CT scan. I returned to work and was in the middle of a student dissertation proposal defense when Dr. Vilensky called. I stepped out into the hall. He told me that the nodule grew one more millimeter and that I should have a bronchoscopy (biopsy) asap. Since we planned to leave town for spring break, this would mean the following week (last Thursday). 

I returned to the meeting and a colleague looked at my crestfallen face and kindly asked if I needed to leave. (She knows my health situation, and I had told the group that if my phone rang, I would need to take it.) I said yes, called Leland, and numbly walked home. I felt completely blindsided, gut-punched. I was terrified that my Tagrisso honeymoon was over and I would have to start new treatments. All the cancer anxiety that has gradually subsided over the past three years came flooding back. I couldn't shake the thought that Tagrisso had stopped working (the median time until cancer progression is ~1.5 years, and I'm at 3 years, 8 months). Knowing I wouldn't get around to writing a blog post for a while, I hastily texted many of my friends and family about this development - including many of you reading this post.

After my pulmonology appointment, I had called my oncologist’s office to ask why Dr. Villaruz didn’t discuss this nodule growth in December. She called around 5pm, a few minutes after I sent that frantic text. She said that she is not concerned, that small growth in nodules is common for people with the EGFR lung cancer mutation, that the nodule is so small that a biopsy would be very difficult and possibly inconclusive or inaccurate, and, most importantly, that Dr. Vilensky should have consulted with her before deciding on a course of action. She reassured me that she is not worried and that there are still many treatments that I can try if Tagrisso does stop working. This conversation shifted my anger from Dr. Villaruz to Dr. Vilensky. I spent 6 hours in emotional turmoil for no reason. It could have been avoided if he had just talked with Dr. Villaruz before telling me I needed a CT scan and biopsy.

Her plan was to order a mobile phlebotomist to come to our house and take a blood sample so that it can be tested for cancer markers, including my EGFR mutation and any other mutations. (It’s called Guardant 360 and it costs $10K+ but I will only pay about $100.) I didn't even know mobile phlebotomists existed! The phlebotomist came to our house last Friday. She was in and out in less than 15 minutes. The results will be ready in about two weeks. The waiting isn't as excruciating as that first wait for genetic testing in Hamburg, when the results would determine if I got to take the "easier" road (targeted therapy) or the harder road (chemo). I have been too busy to think about it much. I am trying to take comfort in Dr. Villaruz's confidence and competence.

Cancer has also been on my mind because we visited Hamburg for the first time since my diagnosis. I gave a keynote on literacies and far-right extremism at a literacy conference at the end of February. It was wonderful to be back in this beautiful city and reconnect with colleagues and our friend Hilia (and her dog, Calia - see below), but it was also bittersweet. Walking along the Alster reminded me of my running route and how, after being a hardcore runner for 33 years, I had to give it up because I was so short of breath (before I knew I had cancer). I still haven't forgiven the two incompetent doctors who didn't order chest x-rays despite my severe shortness of breath. I have fantasies of putting up flyers warning people to avoid them. In some ways, I relived my medical trauma by returning to the place it all began. I also met a kindred spirit, a professor at the conference who had recurrence of breast cancer. We talked for a long time about our shared experiences. 

I also experienced the joy of walking around beautiful Hamburg, eating scrumptious food (Georgian, Turkish-German Döner, bread and pastries, Rhabarberschorle [rhubarb soda/spritzer], quark, and more), experiencing conviviality with colleagues, walking and climbing stairs without being short of breath, and capturing city scenes with my new camera. I spent an ideal Saturday: Leland and I visited our favorite cafe and while L&L did their own things for the day, I walked through Planten Un Blomen (a 116-acre park) to the harbor. I had Fischbrotchen for lunch, viewed an exhibit by a Lebanese artist, Huguette Caland (thanks to Amy Pickard for the recommendation), and went shopping. I limited myself to one sweater from my favorite department store and two items from WMF. The day ended with dinner at a Lebanese restaurant with Hilia and Calia (dogs are welcome everywhere in Germany). I logged 20,284 steps. Thanks to Tagrisso, my lungs powered me through every step.

reunited with Hilia and Calia

Rathaus (City Hall)

What is this orb that blinds our eyes?

Planten Un Blomen

a scrumptious Georgian meal

at Laya Cafe & Bakerei

Pflaumkuchen

more scenes from Platen Un Blomen

the specter of capitalism

the harbor

Elbphilharmonie

Fischbrotchen

Huguette Caland exhibit

close-up of work below

Iran anti-war protest

Lily and Calia

view of NYC metro area as we approached DC