Making a Way in the Wilderness

Last week, I listened to a conversation on Kate Bowler's podcast, Everything Happens. Bowler and her guest, Suleika Jaouad (author of Between Two Kingdoms ), who were both diagnosed with different types of cancer in their early 30s and early 20s, respectively. They discuss what it's like to live in a perpetual waiting room, waiting for the next thing (scan, biopsy, treatment, etc.) before you feel like you can make any solid plans. What I took away was the need to make plans to live my life, despite the health uncertainty: plan that trip, pursue that project, dream about something I want to do. Here are some quotations that struck me: Suleika: " I learned right before my book tour that there was a possibility I was going to have a third [bone marrow] transplant over the summer. And when you get news like that, there’s a way in which you just become suspended in a waiting room . And I waited to make any plans for the summer, waited to commit to trips, thinking this may or...

We met with my oncologist (Dr. Villaruz) and radiation oncologist (Dr. McCall) at UPMC in Pittsburgh yesterday en route from visiting family in Grand Rapids, MI. The main nodule we were watching grew by another millimeter or so. Dr. Villaruz described it as “indolent.” I asked what that meant and as she started to say “growing very slowly,” I recognized the word and blurted out “lazy!” I remarked I’d never heard indolent used in a medical context, and Dr. Villaruz said she’d never heard of it outside of medicine. So we both learned something. She and Dr. McCall said that there is no urgency, but that within the next 9-12 months, they would want to radiate the more clearly defined nodule and another one close to it. A third one looks like “ground glass,” a term for something that is hazy and not quite solid, but you can’t radiate something that is ill-defined and can’t be clearly imaged. It will be much easier to do radiation in the summer than during a busy semester or the winter b...

With apologies to Alanis Morissette... Today marks 4 years on Tagrisso, my magic little pill. I owe this pill my life and my markedly improved lung function. My lungs still aren’t normal – there is a lot of scarring, and I have to use a portable O2 concentrator when I fly. But I can now walk up hills, climb stairs, lift, bike, and hike without feeling short of breath. Four years ago today in Prof. Dr. Reck’s office at the LungenClinic, we received the joyous news that I was a candidate for targeted therapy. It felt like winning the lottery because I could avoid chemo and have much better chances of managing the cancer. Genetic analysis showed I had the EGFR (epidermal growth factor receptor) mutation, and that there was a drug to target this mutation and stop the cells from reproducing. I also have the TP53 mutation, but there is no drug that targets it. Tagrisso (osimertinib) was invented by AstraZeneca researchers in 2009 and approved by the FDA in 2015. It and other targeted therapi...

Sunday, June 14 marked 4 years since I was diagnosed with lung cancer while living in Hamburg. Those of you who have followed my journey from the start know that my family and I went to hell and back several times during those first six months. Here I am before, during, and after. The photo below was the last taken before my life unraveled. I went on a photography outing with the American Women's Club of Hamburg. When my doctor said my x-ray showed "infiltration" and I should get a CT scan, I put it off for a day so I wouldn't miss this event. That's how unconcerned I was. The possibility of cancer never crossed my mind, despite my severe shortness of breath. This was my hospital room at the LungenClinic, where I learned my shocking diagnosis. I was sitting at the little table with the doctors and Leland was on Zoom. Leland had to travel to the hospital by train (an hour-plus trip) before we could process the news together, shellshocked. This photo shows me in the...

Leland and I made the trek to Pittsburgh 1.5 weeks ago for my regular appointment, the first since my scan in March showed another 1mm growth on a nodule and my pulmonologist freaked out. First, a resident met with us. (We'd met him once before in the last couple years.) He laid out various scenarios -- wait and see, get radiation done now or in the future -- and then said I could also "wait until symptoms develop." This seemed like an obviously terrible idea. So I said, "Um, by the time I noticed symptoms in Germany, my lungs were full of cancer..." Then he kind of backtracked. He also asked, "So, what do you think you want to do?" as if that little 10-minute talk was sufficient to make a decision. I replied, "Wait to talk to Dr. Villaruz and the radiologist." So that was definitely a less-than-helpful discussion.  When I mentioned the "wait until symptoms develop" comment to Dr. Villaruz she immediately said, we would notice any c...

Dr. Villaruz, my oncologist, called me on Tuesday, March 31 about my blood biopsy results. I have been too busy to post this update until now. I was standing in line to ask the Provost a question during the Faculty Senate plenary when my phone rang (thankfully, it was silenced). When I saw the 412 area code, I knew it was UPMC. There were like 4 people in line ahead of me, so I stepped out to take the call. In sum: There is no evidence of cells with the EGFR mutation, which is what Tagrisso is targeting! So that is great news. There are some other mutations, but apparently there is no way to determine if they come from cancer tumors versus benign sources. (Dr. Villaruz said something about a condition where the body generates mutations that aren’t cancerous. I was not at my computer, so I couldn’t write anything down. I’m still kind of vague on this point.) Since the nodule has grown 3mm since last August (now 13mm), Dr. Villaruz is going to consult with a radiologist about radiation...

I have emotional whiplash. Two weeks ago, I had a routine pulmonary function test. The results were great – my numbers have held steady for the last year and are vastly better than when I was first diagnosed. But then my pulmonologist (Dr. Vilensky) pulled up my CT scans from August and December 2025. He showed me that a nodule that measured 1cm in August had increased to 1.2cm in December. I was angry that my oncologist didn’t bring this up at my December appointment. Dr. Vilensky said he wanted me to have a CT scan done asap and that if the nodule had grown more, I should have a bronchoscopy (biopsy) to determine if the nodule is malignant, if Tagrisso isn’t working or working as well anymore, if it’s a new genetic mutation, etc. He reassured me that radiation is very effective option. I didn't show it, but I freaked out. I called Leland, went back home, asked on the Tagrisso Facebook group whether others had experienced nodule growth without cancer reccurrence, and texted a fe...