Making a Way in the Wilderness

Sunday, June 14 marked 4 years since I was diagnosed with lung cancer while living in Hamburg. Those of you who have followed my journey from the start know that my family and I went to hell and back several times during those first six months. Here I am before, during, and after. The photo below was the last taken before my life unraveled. I went on a photography outing with the American Women's Club of Hamburg. When my doctor said my x-ray showed "infiltration" and I should get a CT scan, I put it off for a day so I wouldn't miss this event. That's how unconcerned I was. The possibility of cancer never crossed my mind, despite my severe shortness of breath. This was my hospital room at the LungenClinic, where I learned my shocking diagnosis. I was sitting at the little table with the doctors and Leland was on Zoom. Leland had to travel to the hospital by train (an hour-plus trip) before we could process the news together, shellshocked. This photo shows me in the...

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 ...