Still waiting

I'm still waiting for answers. No results yet on the bronchoscopy (to determine if there is an infection). It could take up to 5 days to get results from the various cultures. Dr. Vilensky thinks that at this point my breathing problems are due to the blood clots and pneumonitis (lung inflammation), not COVID. That is kind of a relief to hear. He said it can take up to 12 weeks for blood clots to dissolve. I had been under the impression that they resolved more quickly, so it's helpful to have a more realistic timeline. I may get to go home tomorrow if my oxygen levels continue to improve (I'm currently at 6L oxygen, down from 30 when I arrived on Monday). I need to get down to probably 4L before I can go home.

What is really freaking me out is the possibility that Tagrisso is causing the lung inflammation. This would mean having to stop Tagrisso (all other medications in this drug class would have similar side effects). The other treatment options are not nearly as effective. The hospital oncologist (Dr. Ajala) encouraged me not to get ahead of myself and emphasized that it will be important to get a second opinion from my new oncologist (Dr. Villaruz). I'm trying not to catastrophize, but it's hard not to go there. Not to be "that patient"...but I did tell Dr. Ajala I found some peer-reviewed case reports (not the University of Facebook or YouTube!) of patients who had Tagrisso-induced lung inflammation, took steroids treatment, and then successfully re-started Tagrisso some weeks or months later. She said this could be an option. 

I thought I had won the lottery with Tagrisso...but now I'm not sure. I seem to be on the rare/outlier end of everything: getting lung cancer as a youngish, healthy, non-smoker; only 4-5 patients/year at the LungenClinic have a similar presentation of cancer (lepidic growth along the lining of the alveolar structures); the axis of evil (cancer + pulmonary embolism + COVID); lung inflammation is a rare side effect of Tagrisso; etc. I don't want to be unique anymore.

A friend and fellow athlete/outdoor enthusiast wrote that my lung cancer diagnosis was an "existential slap. Followed by an ultramarathon you weren't intending to run and of unknown distance." That pretty much captures it. I have no idea if I'm running a marathon, 50K, 100-miler, multi-day adventure race, or some other hellish event, like that ultra that goes through Death Valley (Badwater 135). Moreover, I never signed up for whatever this race is!

Speaking of sports, my new room (I was downgraded from ICU last night) has a panoramic view of what I've dubbed Acropolis of State College: the hockey arena and football stadium where people come from hundreds of miles to worship. I will also have a great view at sunset. 

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Thanks to the friends who've texted, called, or visited, bearing treats, a book of Kamala Harris quotations, a kaleidoscope, and flowers (although apparently not allowed at the hospital). We found out that Lily made the middle school volleyball team (A team, mostly 8th graders). Special shout-out to alloparent/former babysitter Anjelica for helping her shop for volleyball workout clothes and practicing with her on Sunday.

Yesterday we had a Prins Google Meet to celebrate my dad's 95th birthday (see my retrospective of his adventurous life on Facebook). Most of the family is at a lovely house on a lake near Grand Rapids, with the rest of us in PA and Marrakesch. It was bittersweet to see family from afar, wishing I could be there in person.