As a professor, I write for a living. So it's only natural that I would turn to writing as I face a diagnosis of lung cancer. Instead of creating a CaringBridge site to keep people updated (I don't appreciate their donation pitches), I decided to start a blog. The first few entries are edited versions of what I posted on Facebook and sent via email in the first 2 weeks of this journey.
June 9, 2022
Well, this is an unexpected turn of events. I am stuck at a hospital outside of Hamburg because they are testing me for TB. They can't do it until tomorrow and it takes a while to determine if I have it and if so, whether I'm infectious. Best case scenario is a couple days. If I have TB and am infectious, I will have to stay here 2 weeks.
I started experiencing shortness of breath/fatigue while running last fall. Had a full work-up done of heart and lungs; everything came back normal except for iron. I figured the exercise fatigue was due to low iron plus menopause. Iron is back to normal and I'm on HRT, but I still feel out of breath after climbing stairs or walking up a steep hill. I gave up running a few months ago and switched to biking.
Over the last few months I developed a minor, occasional cough. A blood test and chest x-ray from last week showed some inflammation, so I had a CT scan done today. Based on the results, they think I might have TB. Unfortunately this lung hospital is an hour train ride from our apartment. I can't leave the room or see Leland or Lily until they know if I have TB. I didn't bring anything with me because I thought it would just be a simple test. So Leland, being the awesome husband that he is, took the train home and will return with my things, then go back home again. That's 4 hours of train travel in one afternoon/evening.
I feel fine. I just hope I don't lose my mind.
June 10, 2022
Anyone want to guess the nightly cost (for self-pay patients) of a private room at this hospital? It's bigger than a studio in NYC and has 2 small desks, small table, reclining chair, 3 comfortable chairs, bureau/storage unit, and a gorgeous view (not to mention unlimited bottled sparkling water).
140 Euros ($147)
Let that sink in.
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| view from my hospital room |
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A war memorial in Grosshansdorf
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| looking down 8 floors |
June 10, 2022
No big updates. Slept pretty well, considering the stressful situation. I'm moving to a room on another ward (a nurse told me this hospital is THE place to be if you have TB) and then I will get to talk to a doctor. Three attempts to get a vein for a blood sample (ugh). And I have to stay here through the weekend while we wait for test results.
Germany seems to be bad luck for Leland's and my health. He was briefly hospitalized in Munich during our 2008 sabbatical (we were visiting from Ireland). And now here I am in a German hospital on our second sabbatical!
Edited to add: I had a long talk with the chief physician. He is fantastic and also a runner, so he understands how finely attuned we are to changes in fitness levels, exertion, etc. We don't have any test results yet, but based on the CT scan and my description of symptoms, he doesn't think it's TB. He laid out 3 possibilities: bacterial infection, interstitial lung disease, or cancer. He doesn't think cancer is likely. His hunch is the lung disease. Not gonna lie - what I've read is kind of scary (irreversible scarring, no cure - just medication to manage symptoms and prevent progression). They're going to put me under general anesthesia on Monday so they can go into the lungs, gather cells, take a closer look.
I am really angry that neither my doctor nor the pulmonologist ordered a chest x-ray last fall when I first complained of shortness of breath--and kicking myself for not insisting on one sooner.
In my coping with insomnia over the past year, I've been practicing skills from metacognitive therapy, mindfulness, and acceptance and commitment therapy. I'm definitely going to need those tools now (i.e., acknowledging anxious thoughts and letting them pass).
June 11, 2022
Good news! I can go home and then return to the hospital on Sunday evening with a negative rapid covid test. Bronchoscopy will be on Monday.
June 13, 2022
Bronchoscopy is today at 11am (5am EST). The doctor assured me I'll be able to join a dissertation defense on Zoom at 3:30pm, so that's the plan! Hopefully that's the last defense I'll ever need to do from a hospital room... I should be able to go home tomorrow after they do a sonography of the abdomen.
It's now 11:30 and I'm still waiting!
Update: Everything went well. They could have some answers as soon as tomorrow. Dissertation defense was successful, too!
June 14, 2022
Our world has turned upside down. The chief doctor at the lung hospital, Prof. Dr. Rabe, told me this afternoon that I have lung cancer (adenocarcinoma). I am prone to catastrophizing and excessive worry, yet I never really imagined this as a possible outcome. I'm probably one of the world's least likely candidates for (lung) cancer. I've never touched a cigarette.
One piece of good news is that the sonography of my abdomen today didn't show anything suspicious. Prof. Rabe thinks (but can't be 100% sure yet) that the tumor originates in my lung. I'm a candidate for targeted molecular therapy, a new kind of treatment that involves taking medication that is "designed to treat cancer by interrupting unique molecular abnormalities that drive cancer growth. The drugs used in targeted therapy are designed to interfere with a specific biochemical pathway central to the development, growth, and spread of that particular cancer." http://www.pennmedicine.org/.../immunoth.../targeted-therapy No surgery, no chemo (although the latter could be an option depending on biopsy results).
Leland and I deliberated about whether I/we should go home asap or start treatment here and continue when we return home at the end of July. For a variety of reasons we feel less stress and more peace about staying here. Prof. Rabe can do a biopsy on Thursday and I can start treatment as early as 10 days later. It would take longer than this -- and a day of driving to/from Pittsburgh or Philly for every appointment -- to do treatment in PA. Prof. Rabe is a world-renowned expert in pulmonology and just a superb doctor and human being. His wife is even a lung cancer survivor.
I am still in shock/stoic mode and focused on problem solving. I know there's nothing anyone can say to make it better, and that's ok. I don't know what to say in such situations, either. We may need various kinds of tangible support when we get home. For now it's enough to know that we are loved.
June 16, 2022
We found out a bit more information yesterday. The sub-type of cancer that I have is lepidic adenocarcinoma. Lepidic spread means that the cancer grows along the lining of the alveolar structures of the lung. This is why my CT scan looks like "ground glass nodules," with no tumors that can be surgically removed. The doctor said they only see 4-5 patients a year with this presentation on their CT scan, i.e., it's fairly rare. They're not even sure that an x-ray last fall would have shown anything amiss because the cancer isn't growing in a more easily detectable mass.
Leland explained the biopsy process this way: "The biopsy will be evaluated to determine any genetic markers on the cancer cells. If they find those genetic markers, they will be able to tell [my] immune system to attack any cell with those genetic markers. It's almost like a personalized vaccine for those cancer cells. This is the best-case scenario. The immune system just takes care of business, with few side effects."
Prof. Rabe said there's a 50-50 chance of finding a genetic marker that can be treated with medication (compared to what he said was usually a 15% chance). He personally spoke with the pathologists/analysts to tell them to leave no stone unturned when searching for (possibly rare) genetic markers, because if they find the marker, the treatment is simple and straightforward (taking a pill with few side effects). This means the analysis could take a bit longer than normal. If it's not possible to identify the genetic marker or come up with a program for the immune system, then I will need to have chemo. This obviously has more side effects. Surgery is not an option due to the diffuse, thin spread.
We will find out in the next 10-14 days whether I'm a candidate for targeted therapy. It will be a long wait. I'll be discharged tomorrow and we've been cleared to keep our plans to visit Berlin this weekend.
June 16, 2022
You know how sometimes a person says just what you need to hear in that moment? That happened to me this week when my pastor, Kate Heinzel, sent the following email (excerpted here):
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."
This verse is the source for my blog title: Making a Way in the Wilderness.
June 22, 2022
Before we left for Germany last summer, I ordered a copy of Christian Brady's* new book, Beautiful and Terrible Things: A Christian Struggle with Suffering, Grief, and Hope. I planned to read it when I returned home, not knowing I would need it now (it's still at home). The title comes from this quotation by Frederick Buechner: "The grace of God means something like: 'Here is your life. You might never have been, but you are, because the party wouldn't have been complete without you. Here is the world. Beautiful and terrible things will happen. Don't be afraid. I am with you.'"
I need these words today: I will have a brain MRI this afternoon. I'm experiencing what cancer patients/survivors refer to as "scanxiety." I don't know how long we'll have to wait to find out results -- could be as late as June 30 (my oncology appointment).
Update: scan is done and they gave us results right away. ALL CLEAR!! Hallelujah. We needed some good news.
Also, the MRI was EUR 843 ($890). The last one we had in the US (some years ago) was $3,500.
*Christian is the former dean of Penn State's Honors College, as well as an ordained Episcopalian priest and a fellow Wheaton alum. He wrote this book after his son Mack died at age 9. In response to my FB post, he kindly sent me a PDF of his book so that I can start reading it before returning home.
This is the best news ever ! Enjoy your trip/trips :)
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