Making a Way in the Wilderness

Leland and I made the trek to Pittsburgh 1.5 weeks ago for my regular appointment, the first since my scan in March showed another 1mm growth on a nodule and my pulmonologist freaked out. First, a resident met with us. (We'd met him once before in the last couple years.) He laid out various scenarios -- wait and see, get radiation done now or in the future -- and then said I could also "wait until symptoms develop." This seemed like an obviously terrible idea. So I said, "Um, by the time I noticed symptoms in Germany, my lungs were full of cancer..." Then he kind of backtracked. He also asked, "So, what do you think you want to do?" as if that little 10-minute talk was sufficient to make a decision. I replied, "Wait to talk to Dr. Villaruz and the radiologist." So that was definitely a less-than-helpful discussion.  When I mentioned the "wait until symptoms develop" comment to Dr. Villaruz she immediately said, we would notice any c...

Dr. Villaruz, my oncologist, called me on Tuesday, March 31 about my blood biopsy results. I have been too busy to post this update until now. I was standing in line to ask the Provost a question during the Faculty Senate plenary when my phone rang (thankfully, it was silenced). When I saw the 412 area code, I knew it was UPMC. There were like 4 people in line ahead of me, so I stepped out to take the call. In sum: There is no evidence of cells with the EGFR mutation, which is what Tagrisso is targeting! So that is great news. There are some other mutations, but apparently there is no way to determine if they come from cancer tumors versus benign sources. (Dr. Villaruz said something about a condition where the body generates mutations that aren’t cancerous. I was not at my computer, so I couldn’t write anything down. I’m still kind of vague on this point.) Since the nodule has grown 3mm since last August (now 13mm), Dr. Villaruz is going to consult with a radiologist about radiation...

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 fe...

I was considering skipping this update because there’s nothing much new to report and I didn’t have that much to write. But it turns out I had a lot to say. This is why I tell my students that writing is a way of thinking: You don’t wait to write until you know what you think; you write to figure out what you think. We had an uneventful 4-month check-up in Pittsburgh yesterday. Well, I did develop a UTI right before going to bed on Monday night, so that was eventful! (Why do such problems always pop up after all the clinics are closed?) I took over-the-counter meds -- thank goodness I had some on hand -- to get me through the night and the drive to Pittsburgh. Then my oncologist wrote a script for antibiotics, which we picked up when we returned to State College. I’ve discovered that UTIs are a common side effect of Tagrisso. I had one in my entire life pre-Tagrisso, and in the past 2.5 years, I've had at least 4 (a month of recurring UTIs in 2023, last September, and now). Fun t...

September 18 marked 38.6 months (3 years, 2 months, 18 days) since I first started taking Tagrisso. Why is 38.6 months significant? Because it is the median overall survival in the FLAURA study, a landmark study (2014-16) comparing Tagrisso and older targeted therapies among patients with advanced non-small cell lung cancer, EGFR mutation, and no prior treatment. 279 patients received Tagrisso and 277 people received an older drug (in addition, all patients received at least one dose of a trial drug). Nearly 58% of patients had died when data collection stopped. However, patients in the Tagrisso group lived nearly 7 months longer (median) than the control group. When Leland and I initially read that number – 38.6 months – in the Tagrisso promotional materials, we were stunned. This was supposed to be good news? The median age in the FLAURA study was 64 and at the time (August 2022), I had just turned 50. But still, it was a sobering statistic. For the longest time, I didn't feel ...

I had my regular oncology appointment in Pittsburgh yesterday. Dr. Villaruz said the scans look good and everything is stable. Although I don’t have much scanxiety nowadays, it’s always a relief to get good news. Just to be sure that my understanding was correct, I asked her why I’m not a candidate for surgery. It’s because of the cancer’s growth pattern. The one nodule that’s visible on the CT scan could just be scarring; she’s not sure if it’s a tumor. When I was diagnosed, I was told the lung cancer was “lepidic.” This means that the tumor cells were growing along the lining of the alveolar structures (air sacs).* That’s why my lungs looked like they were draped in cobwebs. You can’t do surgery in enough places to get all of it. Thankfully, Tagrisso swept out those cobwebs – and continues to do so. We go back in December for a regular appointment. *Lepidic spread tends to be slow-growing, with minimal invasion of nearby tissues, less chance of metastasis, and overall better progno...

June 14 marked three years since my Stage IV lung cancer diagnosis and on June 30, I will complete three years on Tagrisso targeted therapy.  with my first Tagrisso pills (a sample from my oncologist), June 30, 2022 Every year as June approaches, I feel like I am reliving my own Stations of the Cross, recalling what happened each day as I walk toward the inevitable, gut-wrenching diagnosis: my GP telling me the x-ray showed “infiltration” and recommending a CT scan, getting the CT scan and the radiologist (and Leland) thinking I had TB, being sent to the LungenClinic, the doctor ruling out TB and telling me cancer was one of 3 possible explanations for my symptoms, but that it was "unlikely" because of my age, and so on. Not long ago, a Stage IV lung cancer diagnosis was a sure, quick death sentence. A researcher who wrote an article  commemorating the 20 th anniversary of the discovery the EGFR (epithelial growth factor receptor) mutation driving my cancer recalled that i...