Making a Way in the Wilderness

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...

Yesterday (June 30) marked 2 years since I started Tagrisso targeted therapy. The 2-week wait between my biopsy and finding out the genetic testing results was excruciating. Until that point, we couldn't plan anything for the coming weeks or months because we didn't know if I would have to take hard path (chemo or radiation and all the side effects) or the easier path (targeted therapy). Although 2 weeks seemed like an eternity, it was a very quick turnaround. Genetic testing can take as long as 4 weeks. This was one of the main reasons we decided to stay in Germany for the remaining 6 weeks of our sabbatical rather than rushing back home: I could start treatment just 14 days after my biopsy! When Dr. Reck, the German oncologist, told us that I was a candidate for targeted therapy, we were elated and flooded with relief . I felt like I had won the lottery -- which is a bizarre thing to say when you've been diagnosed with inoperable, incurable lung cancer.  Tagrisso has been...

Today marks the second anniversary of my cancer diagnosis. I would sum up the past year like this: less trauma, more normalcy.  No hospitalizations. No bad news (other than the less painful/less expensive blood thinner making my hair fall out). Fewer health insurance hassles. I got COVID, but it didn't affect my lungs at all. My lung function has improved dramatically, and I'm still making gains every week with strength training. I'm now at intermediate level on nearly every exercise, having progressed from beginner and then novice.  When I was first diagnosed and endured the pulmonary embolism nightmare, I wasn't sure I would be alive in 2 years (the 5-year survival rate for lung cancer is very low -- most of us are diagnosed at late stage, in part because there is no screening for non-smokers). Tagrisso has turned out to be a miracle drug. Compared to 2 years ago, I am able to live a normal life...about 95% of the time. And yet, cancer is never far from the surface. I...

It's time to report my bi-annual pulmonary function test results. Drum roll... I am continuing to improve, although my pulmonologist told me that I will plateau at some point. In addition to Tagrisso working its magic, I have to think that strength training and biking (including 2 short interval training [SIT] workouts/week) are a big contributing factor. The percentage below indicates my result compared to the expected result for a woman my age. FEV1 (forced expiratory volume) measures the air you exhale in 1 second. May 2024: 98% (34% improvement since 10/22) Nov. 2023: 95% May 2023: 91% Oct. 2022: 73% TLC (total lung capacity) is the total volume of air in the lungs after inhaling as much as possible. May 2024: 102% !! (48% improvement since 6/22) Nov. 2023: 95% May 2023: 83% Oct. 2022: 72% Jun. 2022: 69% DLCO (diffusing capacity of lung for carbon monoxide, aka diffusion) is the extent to which oxygen passes from the lungs into the blood. It indicates the extent of lung damage....

I had my CT scan on Monday and oncology appointment yesterday. This time I scheduled the scan and appointment back-to-back so that I didn't have to resist temptation: reading the CT scan report before my appointment (see my previous post ). Dr. Villaruz said my scan looks stable. The 8mm nodule is still there, but she thinks it might be scar tissue and isn't concerned about it. Although my lungs don't look "normal," the cloudy webbing that draped my lungs in 2022 is much less visible now. There is always some anxiety before these appointments, but they are getting easier for us as I have stabilized. Stable is good.  In other news, Penn State employees don't know it, but we won a major behind-the-scenes healthcare battle this week. As a faculty senator, I'm serving on the Faculty Benefits Committee for the first time. ( Faculty Benefits is a misnomer: we discuss benefits, including health insurance, for all PSU employees, not just faculty.) I have zero scho...

While reading the newspaper on Friday evening, I was shocked to see an obituary for a State College friend who has lung cancer. The last I had heard from Nina Fosnacht  was a Facebook post saying she was admitted to the hospital on April 1. She passed away 6 days later, just shy of her 61st birthday. I met Nina because I joined a Facebook lung cancer support group, soon after I was diagnosed in Hamburg. I noticed that Nina and I had 3 mutual friends, so I sent her a message to inquire. Not only did she live in State College, but we also had the same primary care doctor (the fabulous Dr. Brian McCleary). Since I was in Germany at the time, I didn't have a US oncologist yet and wasn't sure who to pick, or even which lung cancer center I should go to (University of Pittsburgh Medical Center, various options in Philadelphia, New York, or DC). It was Nina who recommended that I see her oncologist, Dr. Villaruz, at UPMC, and I'm extremely grateful for that recommendation. We ...

When I begin composing a new post in my head, I know it is time to write. I don't know if anyone has used the term "health innocence" before, but if not, I'm coining it now.* Since my lung cancer diagnosis, I have lost my health innocence. Health innocence is the belief that we and our closest loved ones will inhabit what Susan Sontag calls the Kingdom of the Well**, at least until we're senior citizens, when health problems can be expected and reciting a litany of ailments becomes the butt of jokes. Now that I've crossed over to the Kingdom of the Sick, I no longer think of X health problem as outside of the realm of possibility--for me or anyone. After all, what is the likelihood that a super-healthy, 49-year-old runner who's never held a cigarette or lived or worked in highly polluted conditions would develop lung cancer? Or that less than a year earlier, my nephew would be diagnosed with colon cancer, on the cusp of turning 36? Exactly.  Cancer was one...