Making a Way in the Wilderness

Since last September, Josh Moyer, a local newspaper reporter, has been working on a story about how Penn State handled my health situation. The article kept getting delayed because he had to work on covering all the @*&$#* going on at PSU last fall - the Proud Boys speaker event and the president blaming peaceful protesters for the ensuing chaos, cancelation of the proposed Racial Justice Center, surprise announcement about merging the two law schools, etc. During a news lull, the article finally hit the front page! I wish there had been space to mention that I was re-hospitalized twice after being discharged from the hospital in Virginia, i.e., not teaching for the fall semester was the right call. https://www.centredaily.com/.../pen.../article272439458.html The story is behind a paywall, so the hyperlink in first sentence and here goes to a PDF that I've uploaded to Google Drive. A friend also sent me a link to a free version .

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 k...

All options have been exhausted. I will have to pay $210-250 per month for my blood thinner medication (up from $41). There are no coupons, cheaper pharmacies, or co-pay programs. There is one blood thinner I haven't tried that is supposed to be as effective as enoxaparin and costs $50 (ironically, it's a more expensive medication so it qualifies for the specialty medication $50 co-pay). However, my hematologist doesn't want to "rock the boat" yet. I will touch base with him after my next oncology appointment in Pittsburgh.  To be clear, we can afford this cost. But the price increase is infuriating, even more so because it's clear I'm not the only employee facing higher prescription costs. One way PSU will save $20 million with switching to Highmark is by passing on higher prescription costs to employees. Yesterday I learned about a horrendous health insurance situation with a PSU student whose parents are professors (the dad is also in the College of Edu...

I didn't anticipate writing another blog post until my next oncology check-up in February. But Penn State's switch from Aetna to Highmark on January 1 has created medication chaos for me. I did not think I would have to spend hours making phone calls and writing emails to make sure that my very expensive targeted therapy medication (Tagrisso) and my blood thinner (enoxaparin/Lovenox) will be covered and that I have no gaps in doses. It has been very time-consuming and stressful. The short story is that I will still pay nothing for Tagrisso and I have 2 months of enoxaparin at the price I was paying with Aetna ($41). Here's the longer story. Due to the New Year's Eve holidays, I first called my oncology nurse on January 3 or 4 to get a new Tagrisso prescription submitted and pre-authorized with Highmark. Once it was approved I called the mail-order specialty pharmacy (Accredo) to find out the cost. $5000 per month. I was livid. After several rounds of phone calls with Hi...

I did not know until reading Kate Bowler's Advent devotional that the period between Christmas and Epiphany is called Christmastide--the 12 days of Christmas popularized in the song. She writes, "Christmastide (December 25 - January 5) is about the gradual departure of darkness and the gentle dawning of light at Epiphany." The symbolism of light and darkness was especially meaningful to me this year. We quoted this verse in our holiday card:  By the tender mercy of our God, the dawn from on high will break upon us, to give light to those who sit in darkness and in the shadow of death, to guide our feet into the way of peace. (Luke 1:78-79) I have felt the light begin to pierce the darkness -- in being able to travel to see family for Thanksgiving and Christmas, in the Weihnachtsmarkt (German Christmas market) indoor/outdoor party we hosted, in needing less oxygen than I did some months ago (I sometimes forget my portable concentrator as I'm walking out the door), in ...

I belong to a Facebook group for people taking Tagrisso (Tag for short). Occasionally people  post pictures from their travels with the caption "Tag on Tour" to show that Tagrisso is enabling them to travel and living a full life despite cancer. Well, I'm now at the point where I can start my own tours on Tag. We drove to 8 hours Grand Rapids, MI for Thanksgiving--the first time seeing my Michigan family (including my 95-year-old dad) since July 2021. I arranged to get a portable oxygen concentrator with continuous flow and used that in the hotel room overnight. So I knew I could travel safely by car. But what about flying? The missing piece was a test to determine how much supplemental oxygen I would need at altitude. My pulmonologist ordered a high altitude simulation test, but--of course--it wasn't available at any hospital within a 2-hour drive of State College. Leland was out of town, so my friend Allison got up at the crack of dawn to accompany me to Pittsburgh ...

On Monday I had a follow-up CT scan to see whether the cancer medication is working. Yesterday we drove to Pittsburgh to meet with Dr. Villaruz and find out the results. She confirmed that the lower lobes of my lungs are beginning to clear up! We saw this ourselves on the CT scan. (Because my cancer grows in the lining of the alveolar structures of the lungs, there is no tumor to remove or monitor. This is why my previous CT scans looked very cloudy.) This means that Tagrisso is doing its thing and blocking cells with the EGFR (epidermal growth factor receptor) mutation from copying themselves. There is some fibrosis (thickened, stiff tissue) that may be scarring; only time will tell if the damage is permanent.  We were relieved and elated to hear the overall great news. Leland predicted we would get good news because I've been using less oxygen and walking faster on the same amount of oxygen, I don't cough anymore, and none of my symptoms have worsened. So I will just keep ta...