Life Goes On 2026 Travel Edition

When you learn you have an unpredictable chronic disease, you have two choices: give up or keep living. So, I decided to keep living. Living doesn’t look like it used to. Some days I. Just. Can’t, and I spend most of those days as immobile as possible (I’ve finished a lot of novels since this all started). I give you: Life Goes On 2026 Travel Edition.

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Ren and I have wanted to take the kids to Europe for a while, but our first attempt at making that trip was thwarted by COVID-19. So, when Sky registered for a summer term in Prague, we decided to go visit. Of course, when we made this plan, we didn’t know about the giant mass in my chest. We decided to do it anyway. Why let a major surgery keep you down? Sitting in Europe is more fun than sitting in my living room, I reasoned.

By our July departure date, I was in better shape than before the surgery, if only because I was no longer coughing. But I wasn’t good enough to walk much, so I planned to spend most of the trip sitting in cafes while Ren and the kids explored. 

Things got off to a bumpy start. The second full day, I stepped into a hole in the middle of the sidewalk and fell flat on my face. Why there was a hole in the middle of the sidewalk with no warning signs, I can't tell you. But I discovered it when I was looking at my phone trying to figure out 1) where to find our rideshare driver, and 2) why they were sending a Prius. None of my family members saw me fall, but a German woman passing by felt strongly that I should go to the hospital (and she didn’t even know about the major thoracic surgery I’d just had). Ren and the kids mostly wanted to know why I was on the ground.

Since we had JUST arrived in Munich, I didn't want to cause a bigger scene than I already had when I dropped my suitcase, chucked my purse across the sidewalk (I fell HARD, you guys), and fell on my face. I rolled over and peeled myself off the ground. Surprisingly (and importantly), I did not seem to injure my recently surgerized thoracic region. I did, however, twist my ankle, skin my knee and elbow, and knock the wind out of myself. All things considered, I felt pretty lucky. 

Eventually, I convinced the kind passerby I was ok, and we tracked down the ride-share. The Prius driver asked why I requested a Prius when we clearly couldn't fit into a Prius. I asked the Prius driver why they sent a Prius when I asked for a ride for 6. By this time, my sternum was starting to hurt, but people were reaching the limit of what they could handle in a day, and we just needed to get to the hotel. We got the Prius canceled, caught our rideshare van (at an entirely different pickup location because of course it was), and made it to the hotel. 

Clearly Munich was messing with me because when we got there, they told me I had only reserved a room for four. Since our family has five people, I find that hard to believe, but I was ready to sleep on the couch in the lobby if it came down to it. The woman must have seen the desperation in my eyes because she worked some magic and found two rooms that would hold us all. 

When we got to our room, I told Ren I was pretty sure I'd broken my ribs. One way to find out: I lie down in bed. Yep. Broken.*** 

The next day I sent Ren and the kids out together; they lost one another--long story--and ended up coming back to the hotel in groups, but eventually everyone made it back. Days after that, I walked very, very slowly. And by our last stop, I was finally convinced maybe I should see a doctor, which I did in a tiny village in France. There, the doctor, who was busy ordering her lunch when I went in, spent 2 seconds looking at the X-ray before telling me I was fine. 

I mean, define fine. 

I paid 100 euros for that experience, and it was totally worth it. How often do you get an X-ray and a consultation for that price? I mean, she was wrong (which my thoracic surgeon confirmed later when she looked at the X-ray during a post-op follow-up appointment), but that's ok. 

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My takeaway from the Europe trip (other than don't step in a hole and face plant) is that the five of us should probably not travel together unless we are taking a tour. Too many cooks in the kitchen and all that. But life is short, so on Stow's fall break, we decided to take a road trip. He's driving now 🤯, and we took turns and made our way to the UP. I don't have any stories to tell because there were no injuries, we didn't get lost, and we had an all-around good time. But I DO have pictures, so here you go:

We couldn't have gotten luckier with the weather and the leaf colors. I'm glad we just keep living through our imperfections because sometimes we end up encountering something spectacular!

***If you have ever broken your ribs, you know what I mean. This wasn't my first rib-breaking rodeo. I fractured two ribs 25 years ago when I slipped while hiking. At least this time I only had to track down a van and get to a hotel. The first time, I had a four-mile hike down a mountain. 

To Breathe or Not to Breathe

My highly accurate illustration of what my lungs look like

Here are ssome of the things that are hard to do with a paralyzed diaphragm:

Sleep, go up stairs, pick up something off the ground, most yoga positions, walk the dog, walk farther than 1/4 of a block, swim, hike, get ready for the day, dance, keep up with children and puppies, stand up from a chair, hurry, carry things, go shopping, stand for more than a few minutes.

Instead of swimming, I kick around in the pool. I don’t even try basketball or tennis. Sometimes, when I’m someplace like Costco or Walmart, I forget I can’t breathe and set off at my pre-surgery pace. Somewhere around the clothes section at Costco or kitchen goods at Walmart, I realize my mistake as I run out of breath and get lightheaded. The fatigue is deep and all-encompassing. It’s unnerving to go from going about your day to feeling like you might collapse on the spot. I stop going places alone because I am never sure I can get there and back safely. 

One day I might be able to sustain a near-normal level of activity, but the next it will take all I have to go from the bed to the chair. I almost always have a headache and a stiff neck. The chiropractor tells me it’s because of all the work my body is doing to breathe. The weird thing is that I don’t notice the effort it takes to breathe until I am already out of breath. At the end of the day, my Apple Watch tells me I did 30 minutes of hard exercise; all I actually did was walk from my car to my office and back. Does it count as exercise if my watch thinks it was?

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The one thing that was abundantly clear from all of the Mayo appointments is that the loss of a functioning diaphragm in my left lung is having a sizable impact on my life and health. Everything else going on is manageable, but the diaphragm is an issue. When I did a “sniff test” (perhaps the easiest and shortest medical test there is), I saw a video of what my lungs do when I breathe in. The functioning diaphragm dutifully pulls downward, increasing lung capacity. The paralyzed one that is already crowding out my lung pushes up, lessening the capacity even more. Talk about useless!

It may seem obvious that losing half of a lung would make it hard to breathe, but, apparently, there are people who live perfectly happy lives without a phrenic nerve. They reach a point where they experience no significant difference between their pre- and post-surgery activity level. At my surgeon's urging, I’ve spent the months since surgery trying to push myself back to my normal activity levels. I can't even get close. 

I have two options. I can adjust to the limited activity level that is my new normal, or I can have surgery to try to improve things. The surgery* is major (with a 3-4-month recovery time), and the success rate is lower than I’d like. Also, at best, I can only expect things to get 50% better than they are now. I have no idea what that means in practice. Before the mass was removed, my lung function had been reduced to 80%. After the surgery,  sans phrenic nerve, it decreased by another 20-30%. Does that mean my current capacity is 50%, and the surgery could potentially get it back to 75%? No one can tell me for certain. 

I tend to err on the side of not doing surgery. I had carpal tunnel for 17 years before finally breaking down and having it fixed. During those 17 years, I couldn’t hold a phone to my ear for more than a few minutes, my hands tingled whenever I drove, I couldn't carry bags without losing feeling in my fingers, and I woke most mornings to hands on fire. It wasn’t until I could no longer function that I had the procedure. Ditto my tennis elbow. 

I don’t like playing the odds, and I’m not eager to have a big surgery that might not help all that much. But I know that if things are this bad now, they will only get worse as I age. For the pulmonologist, the decision is a no-brainer. Someone my age shouldn't be this limited in terms of lung function. Still, I really don't want to have robot arms forced through my ribcage again. 

This is not how I thought I would be spending my sabbatical semester, but when I am being rational, I can admit that I’m too young to be done with tennis and hiking and walking the dog. I’m too young not to be able to take the stairs. Here’s hoping it helps!

*  The surgery involves folding the diaphragm down like an accordion and stitching it in the folded position. It won’t fix the diaphragm, but it will give the lung a bit more room.