Making a Way in the Wilderness

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...

I hadn’t written a blog post about my knee injury because I wasn’t sure whether it was related to cancer, but now I know how they are connected. The short version is that my knee swelled up so badly that I couldn’t walk on the night of May 6th/morning of May 7 th.  Because I am on blood thinners, the knee joint kept filling up with blood, a condition that I learned is called hemarthrosis. I’ve spent the past 4+ weeks meeting with a bazillion doctors (GP, orthopedic doctor, orthopedic oncologist, orthopedic surgeon, hematologist), going to the ER (twice), having my knee drained (3 times), and mostly lying on the sofa for 2 of those weeks, trying to get the swelling to come down. I still have a bit of swelling, but I’ve been able to walk 10-20+ minutes the past week without making it worse. I’m still wearing a compression sleeve, which is a step up from the brace and crutches I was using before. Now for the longer version. There was no particular event that caused the injury. The d...

My routine oncology visit to Pittsburgh last Tuesday was, thankfully, uneventful. I calculated that this was our 11 th trip. We were in and out in less than an hour – a new record! Typically, my bloodwork is scheduled for noon and then we wait for nearly an hour (or more) to see Dr. Villaruz at 1pm. This time, we walked out at 12:52pm. My scans are stable, and I return in 4 months. I also learned last week that my pulmonary function test results are back in the normal range. That is a big relief. It seems the lower number from my January test was a fluke. This Wednesday is the launch of the book I co-edited with Rakhat Zholdoshalieva at UNESCO Institute for Lifelong Learning (UIL). in Hamburg, Germany.  Family and Intergenerational Literacy and Learning: International Perspectives is a free, open-source book published by UIL. (You can register for the April 2 book launch here .)  Why do I mention this in my cancer blog? Because this three-year book project is intertwined w...

Thankfully, I haven’t had much to report health-wise. I’m continuing to feel well, and now only use oxygen while flying. I did have a major skirmish with insurance because I noticed that the oxygen supply company said I owed over $550 in unpaid bills, instead of the usual $16/month. After hours of sleuthing and contacting PSU’s Highmark concierge, I learned that the oxygen company somehow neglected to submit the in-network renewal paperwork, so I was being charged out-of-network prices for 5 months. Earlier this month, I spent nearly an hour on the phone filing an appeal. I learned this week that it was approved…but I still wasted probably 3-4 hours of time and a lot of mental energy because of someone else's incompetence. I had my pulmonary function test today, the first since May 2024. One indicator increased, another decreased slightly, and the third decreased from 86% to 75% (% of expected value for women my age). (see below) My pulmonologist thinks this may be a function of ...