Adjusting expectations, with bonus post, twisted theology (or, what not to say to someone with cancer)

Leland and I drove in our new car (Hyundai Ioniq 5 electric vehicle - yeah!) for my 3-month follow-up appointment in Pittsburgh on Thursday. My oncologist is on maternity leave, after having her 4th (!) baby. When the physician's assistant (a PSU grad, of course) and doctor said that the cancer looks "stable," my heart fell. They explained that from their perspective that is good news because Tagrisso is holding the cancer in check and it's not spreading. So they think it's working as it should.

I have read a lot about targeted therapy and Tagrisso and both Leland and I were under the impression that it would reduce (and maybe even eventually eliminate) the existing cancer cells. In the Tagrisso Facebook group there are lots of people who now have "no evidence of disease" (NED). That is what everyone with lung cancer is hoping for...but now I'm realizing that I have to adjust my expectations about what Tagrisso might do for me. Tagrisso doesn't kill cancer cells. I may never get to NED. So although the doctors said that stable is good, it didn't really feel like good news because I was expecting to hear the cancer was clearing out. It was a big reality check that the existing cancer cells may be there to stay and that stable is good. And it made me furious all over again that my doctor and pulmonologist in Germany never ordered an x-ray when I first saw them about shortness of breath in January and March 2022, respectively. The cancer kept slowly spreading until June 30, when I first started Tagrisso.

My Hillman Center doctors also noted that there's reduced inflammation, what seems like evidence of reduced scarring, and generally more dark (clear) areas in my lungs. I'm now only using O2 while walking to/from campus and for exercise, and recently reduced the O2 from 4 to 3 liters/minute. My goal is to get 13-15K steps per day. I don't feel out of breath climbing the steps in my house. I frequently do errands like grocery shopping without my portable. So that is all progress.

But if I'm honest (as Paul Hollywood would say), I am becoming more doubtful that I will be able to walk without O2 in the foreseeable future, much less hike, bike, or run. If I didn't still have shortness of breath on exertion, I would feel differently about the cancer cells hanging around. But I still can't do anything more strenuous than walking. As an experiment, I recently walked uphill from my house with no O2; my saturation dropped to low 80s in less than a minute (it's supposed to be at least 94%). Last night I dreamed that I was biking without O2 and was disappointed to wake up and realize that it was just that: a dream.

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I posted yesterday morning in the Tagrisso FB group with a question about what Tag does and if it doesn't kill cancer cells, then why do some people achieve NED (no evidence of disease) status? Here was one response from a man whose last name happens to be "Lucky":

This kind of glib response and chalking it up to answered prayers makes me want to scream. What a twisted theology. So all those people who don't respond as well to Tagrisso or X treatment plan just need to get more people praying for them? Or God just chose not to answer their prayers?

I feel like writing Kate Bowler (professor, ordained minister, cancer patient, and author of No Cure for Being Human) about this exchange because I know she would share my outrage and maybe even rant about it in her podcast.