Making a Way in the Wilderness

A year ago today, I was discharged from the hospital after a 3-day stay due to shortness of breath and recurring blood clots. My blood thinner had failed...for the second time in 5 weeks. This was my third hospitalization in 2 months. For a long time afterwards, my daily goal was simple: stay out of the hospital. Every day I didn't return to the hospital felt like a victory. I am still nervous about being too far from medical care.  Getting a shot twice a day is not fun. The injection often hurts, and I always have bruises and/or hard lumps on my stomach and arms. But the blood thinner is working: I haven't had any more blood clots. I'm thankful for the attending doctor and my oncologist who figured out and tested a solution during my hospital stay, and follow-up telehealth appointments with my hematologist at UPMC. I'll meet with him next month to discuss switching to a less expensive blood thinner (my medication was $41/month with Aetna and now costs $180 with Highmar...

Before cancer, my life used to revolve around 3 calendars: the university academic calendar, Lily's school calendar, and, in church, the liturgical calendar. Now, I find myself living life in 3-month increments, from one scan to the next. August, November, February, May: those are the signposts that indicate what direction I will go and what I can expect. Even though I've been stable and have stayed out of the hospital since last September, making plans much beyond a 3-month timeline still seems risky. Other than needing to use oxygen while exercising, I feel great and perfectly healthy. And yet, I keep waiting for the other shoe to drop. I'm living a full and joyful life, but there is still background noise, the unbidden thoughts of how long Tagrisso will keep working. Yesterday Leland and I traveled to Pittsburgh for my 3-month oncology appointment. I was more anxious than usual because I had read the CT scan report from Mt. Nittany Hospital on Tuesday...but I had no idea...

Yesterday I was listening to a Kate Bowler interview with  theologian Miroslav Wolf  about what makes a good, meaningful life. She said, "When we look at the reverse of this sort of happiness obsession [in US culture] and we look at what it means to live with what the world views as losing--illness, pain, grief, suffering-- what what do you think that flourishing might look like when we are, on the surface, losing in the game of life?  Wolf's and Bowler's thoughts on this are worth pondering.  One that thing that flourishing means to me is re-inhabiting my body and reclaiming some physical strength. Tomorrow (July 28) marks one year since the terrifying flight home from Germany with what turned out to be pulmonary emboli, plus COVID to boot. I can't describe how weak I was during the flight and even after I was hooked up to a massive oxygen flow in the hospital. I couldn't walk or lift my butt off the hospital bed. Turning over in bed was a Herculean effort.  Wh...

I named this blog "Making a way in the wilderness" after my pastor sent me this verse and message last June: Do not remember the former things, or consider the things of old. I am about to do a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert… -Isaiah 43: 18-20 "As you step into the wilderness, the unknowns and new paths ahead, remember. And when you forget, again, remember. Remember that God is doing a new thing; making a way in this wilderness; making a way with you. You don’t walk this journey alone. Remember, you are never alone. The God of abundant life is here, in the dryness of the desert, in the promise of newness – here, with us." Now, one year after my diagnosis, I can attest that I haven't walked this journey alone, that I have found (or forged) paths in the wilderness and rivers in the desert, albeit sometimes just a trickle of water: calls, notes, emails, texts, cards, and visits ...

Not to compare my suffering to that of Jesus, but I've been thinking about how approaching the one-year anniversary of my diagnosis feels like going through the Stations of the Cross during Holy Week. Every day there's another significant or traumatic event to remember, every day another step closer to the inevitable, culminating moment.  today, June 7: The day my general doctor in Hamburg told me that my x-ray indicated I should get a CT scan. All he could say is that the x-ray showed "infiltration." I had no idea what that meant, or could mean.  June 8: I put off getting a CT scan because I had registered for a photography walking tour with American Women's Club of Hamburg and didn't want to miss it. This was an intentional decision; I didn't want to cancel plans out of fear. I didn't think getting a CT scan was urgent. The thought of cancer never crossed my mind.  On the photography tour, stopping to photograph (and smell) the roses, oblivious to th...

I met with my pulmonologist, Dr. Vilensky, on Thursday to go over the pulmonary function test results and discuss the bronchoscopy. He confirmed that my results improved dramatically compared to last October. I actually was surprised to learn how much I had improved on each of the key measures.  FEV1 (forced expiratory volume) measures "the air you exhale in 1 second. A low FEV1 suggests a breathing obstruction."* May 2023: 91% (vs. 73% in October 2022) (The percentage indicates my result compared to the expected result for a woman my age.) TLC (total lung capacity) is "the total volume of air in the lungs after a maximal inspiration."  May 2023:  83% (vs. 72% in October 2022 and 69% in June 2022) DLCO (diffusing capacity of lung for carbon monoxide,   aka diffusion) " is the extent to which oxygen passes from the air sacs of the lungs into the blood. "  It's an indicator of the extent of lung damage. I believe this indicator is what helps explain my s...

I had a pulmonary function test this morning, 7 months after my last one.  Let me put this test in context. I had 3 PFTs in Germany, including one on March 23, 2022 with a pulmonologist (Dr. Iwansky) who claimed my results were normal (I don't see how that is possible, given how short of breath I was at that time). She never did a chest x-ray or even asked if I already had one, but at the time I didn't know any better. I didn't realize the gravity of her error until after my diagnosis. The possibility of cancer or serious illness had never entered my mind. I returned on May 31 because of a persistent dry cough and continued shortness of breath. She still didn't order an x-ray. I had to ask for it. The only thing she mentioned was using an inhaler.  My doctor at the LungenClinic, where I was diagnosed, was dumbfounded that she didn't do an x-ray. I emailed Dr. Iwansky in June to tell her I had lung cancer and to ask why she hadn't ordered an x-ray. She admitted-...