Making a Way in the Wilderness

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 ...

We drove to Pittsburgh for my quarterly appointment last Thursday. Everything went well. Nothing new on my scans. Scarring is what distinguishes my lungs from "normal" lungs. When I asked Dr. Villaruz if there are any signs of cancer, she said that if they did 100 biopsies and looked at the cells under the microscope, they could maybe find some cancer, but there's nothing visible on the scan. I do, however, have to continue taking Tagrisso or the cancer will return.  Hearing that there are no visible signs of cancer was fantastic news! I've now graduated to scans and appointments every 4 months instead of 3. This was a bright spot for us in an otherwise bleak, depressing week. Also, last week I started biking without my oxygen for the first time. I was a bit apprehensive, but I didn't feel short of breath, even during my speed workout. So now I'm only using oxygen on flights longer than 1-2 hours! I drove up to Ithaca for the weekend to see grad school and run...

November is lung cancer awareness month. I never knew anyone with lung cancer; I assumed that it only affected people who smoked. But anyone with lungs can get lung cancer. In fact, lung cancer rates are rising among female never-smokers under 55 – particularly Asian and Asian American women. I was diagnosed at age 49; I had no risk factors and had never smoked a single cigarette. The material below is adapted from https://www.lungcancerresearchfoundation.org/for-patients/free-educational-materials/lung-cancer-facts/ Lung cancer is the leading cause of cancer death worldwide. -About 234,580 people will be diagnosed with lung cancer in 2024 in the U.S. -1 in 16 people will be diagnosed with lung cancer in their lifetime (1 in 16 men and 1 in 17 women). Lung cancer kills almost 3 times as many men as prostate cancer and almost 3 times as many women as breast cancer. Lung cancer claims about as many lives each year as breast, pancreatic, and prostate cancer combined. But these three canc...

I’m thrilled to report that my transatlantic flights were uneventful! It was my first time flying out of State College during a home football game. It was pretty cool to see the filled stadium.  For those who don't know, the stadium is the 2nd largest in the US and 4th largest in the world. Flying out of Philly, there was the brightest rainbow I’ve ever seen – a double rainbow at that. I’m not really into signs or omens, but I took comfort and joy in seeing the rainbow. I don't need extra O2 for short flights (<1 hour) at lower altitudes, but I definitely needed it on the transatlantic flights. At one point, I unhooked from the oxygen and got up to use the bathroom. I was gone maybe 3 minutes, but when I measured my O2 saturation, it was only 77%. I didn't really feel short of breath. This indicates that my O2 on the 2022 return flight from Germany must have been horrifically low, because I couldn't even walk a few steps.  In Manchester, my friend/colleague Carol...

The last time I took a transatlantic flight, I barely survived. I had to be carted off the plane by EMS personnel because I was too short of breath to walk even a few steps. Tomorrow I'm flying to England. Needless to say, I'm hoping this flight is uneventful. I'm relieved that my friend and colleague Carol is flying with me (we are presenting at the British Educational Research Association conference in Manchester). I wouldn't have felt comfortable making the trip by myself. I will bring a heavy backup battery for my portable oxygen concentrator because airlines stipulate that you need enough battery power to last 1.5 times the flight duration. I'm not looking forward to having to wear the concentrator tube plus my glasses and a mask (too much COVID still going around) for the 7- to 8-hour flight -- lots of tubes, bands, and apparatuses on my ears, nose, and face. I am grateful that my blood thinners are working and that my lungs have improved enough that I can o...

I began my quarterly oncology appointments with Dr. Villaruz at UPMC two years ago. They are now becoming more routine and less anxiety-inducing. I slept well the nights before my CT scan and the appointment. At my appointment on Thursday, Dr. Villaruz said my scans still look stable! The small nodules she has been monitoring have not grown. She showed us the scans from August 2022 and now. Then, my lungs looked like they were draped with cobwebs. They were mostly white (on lung scans, black/clear = good and white/cloudy = bad). She said, "Frankly, they looked terrible." Now they are mostly clear, with some scarring and nodules. I can certainly feel this difference in my daily lung function, but the visual contrast was striking evidence of Tagrisso working its magic. One thing I haven't yet described in this blog is a typical CT scan and oncology visit. Before the CT scan at the local hospital, they put in an IV for the contrast (an iodine-based liquid that makes you feel...