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?

*****

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. 

In Which I Talk about My Health (Part 2)

In April, the mass is removed. The surgeon expected it to be the size of a lime. It is actually a small grapefruit. The surgeon is pretty proud of the fact she was able to get the mass out through my ribs, going so far as to reenact how she yanked it out. You know those cartoons where one of the characters has to put both feet on the wall and pull with his whole body weight to get his friend unstuck from a random hole? Her reenactment looks a lot like that.

I am happy to wake from surgery to find my sternum still intact, but having a grapefruit yanked through your ribs hurts.

With the grapefruit goes one of my phrenic nerves. The phrenic nerve controls the diaphragm which controls breathing. It turns out, not having a phrenic nerve is a drag, but I don’t learn that until later. During my four days in the hospital, I’m just happy to see my pulse ox finally get to 90%.

A text from Falcon/Pink on the day of my surgery. Lol.

When we receive the pathology report a few weeks later, we expect to learn about the stage and type of thymoma I have. Instead, we hear the words Castleman Disease (CD) for the first time. When they tell me I have Castleman Disease they do it with a combination of awe and happiness. The surgeon tells me she can’t believe my luck—the chances of my mediastinal mass being CD is infinitesimally small. She tells me when they come up with cases to try to stump med students, they don’t even consider using a case like mine because no one would ever be able to diagnose it correctly. It’s House-level rare.

I don’t know whether to be annoyed or thrilled that I have achieved this level of rarity.

*****

I read about Castleman Disease, and it’s not great. Flares land people in the hospital for months at a time. Treatment protocols require regular infusions of meds used in chemo. There is no cure. So little is known about it that newly-diagnosed patients are encouraged to share their tissue samples and test results to help build a database for future research. There’s a website, a Facebook group, and an annual summit where doctors and researchers update patients on new treatment protocols. After years of spine issues for Ren and a host of other health challenges with the kids, I feel infinitely tired of dealing with complicated health stuff. I feel like this is a battle I cannot fight.

When I see the hematologist, I learn I have Unicentric Castleman Disease (UCD) and not Multicentric Castleman Disease (MCD). I have UCD; I am lucky, but I still feel like sh*t, and no one knows why. The surgeon and the hematologist tell me it can’t be the UCD, but I wonder how they can be so sure since it seems I’m only one of a handful of people to ever have Castleman Disease of the thymus.

Although I recover from the surgery itself, I feel unwell all of the time. I wonder how I could go from a healthy, fairly active person to one who can’t do much of anything and takes 13 medications every day. If it isn’t the CD, then what is it? No one can tell me, so I get a referral to Mayo Clinic.

The Mississippi at the Wisconsin-Minnesota border

*****

Over the next few months, I spend a total of seven days getting evaluated in five different departments at the Mayo Clinic in Rochester, MN. I don’t live close to Rochester, MN, so this is not an easy feat.

Days at Mayo are long. The system is efficient, and everyone is incredibly nice, but appointments seem to beget appointments. Often you start the day thinking you have 2 or 3 appointments but end it having had 4 or 5. The ability of the Mayo staff to schedule and get people in and out of appointments on time is Olympic-level. Prior authorizations and ok from insurance companies happen almost instantaneously.

Mayo is a strange universe unto itself (Rochester, too, honestly). Hotels have Mayo rates and free shuttles to and from the hospital campuses. People chat about their illnesses over their free continental breakfasts or while waiting for the shuttle. They stay at the same hotel each visit and eventually make friends. At the clinic, everyone—from the doctors to the technicians to the people at information and check-in to the other patients—is unwaveringly positive and kind. Given that this is the place where people come when the other places have failed them, it’s both weird and totally understandable why people seem so glad to be here.

My seven days of appointments are enlightening in what they rule out as much as in what they discover. They help me put the pieces together. I learn more about how the Castleman Disease mass may have triggered many of the problems and get a better idea of which problems will and won’t resolve over time. I meet with a Doctor of Pharmacy to comb through my list of meds and come up with a plan to better manage side effects. I figure out which follow-up procedures I can avoid and which ones I need to do. In the process, I eventually stop coughing, and my voice edges closer to normal; my memory issues and brain fog are a lot less noticeable, too. I even start to sing again, albeit badly.

Statue along the Mississippi River

What’s the takeaway?

It’s complicated.

It’s possible that with more diligence by the doctors in 2023 and 2024, most of this could have been avoided. It’s also possible that the rarity of the thing was too much for them to grasp. It’s possible that the esophagus issues and the GERD and the brain fog and the crazy BP and the exhaustion weren’t related to the CD at all, but it’s also possible that they were.

The only thing that is abundantly clear is that I HAVE to do something about the paralyzed diaphragm because I miss being able to breathe. That surgery happens later this month.

In Which I Talk about My Health (Part 1)

 So, it wasn’t cancer. What was it? We will get there, but I want to start at the very beginning…..

It started with a cough, or at least that’s when I think it started. Looking back, I’m not so sure. Anyway, in April 2023, I started coughing. At first I thought it was my annual sinus infection, and then I thought it was allergies. And then I took students to Japan, and I thought it was allergies to the trees in Akita or the stale city air of Tokyo. Then I blamed jet lag and my busy schedule. Then the new school year started, and the cough just became part of my existence. 

In October, after I’d been sleeping in a chair for six months, I finally went to the doctor. I asked for a chest x-ray and got a GI referral. The chest x-ray was clear. The GI testing showed I had poor mortality, severe esophageal GERD, and Barrett’s esophagus, so I changed my diet and started some medications. I got a second opinion. 

The diet changes and new med helped except when I got even a little bit too tired or caught the slightest cold. Then I was right back at where I started. My voice started to change. I lost vocal range. Looking back, I know the voice change had started much earlier; when we took students to karaoke in Japan in May, I could no longer sing my standard karaoke repertoire. Like most women, I assumed it was age, exhaustion, menopause. 

Still, I went to an ENT and then a different ENT and learned I had paradoxical vocal cords, vocal cord nodules, and an irritable larynx. I did speech therapy to keep the cough at bay. And, it worked until it didn’t. The speech therapist told me it was a mystery. I stopped singing. 

Maybe it is sleep apnea, my doctor suggested, so I saw a pulmonologist and did a sleep study. The results were normal. The pulmonologist told me he couldn’t help me. I asked the GI doctor whether my esophagus issues caused my throat issues and the ENT whether my throat issues somehow caused my esophagus issues. I was desperate to stop coughing. The GI told me to consult with the ENT and the ENT told me to consult with the GI. I asked where the ENT’s specialization ended and the GI specialization began. No one answered that question. 

By this time, three years have passed. What started not long after I lost my dad continued until a year had passed since losing my mom. The consensus was that the cough was just a cough, even though it took my breath away and forced me to gasp for air. Even though it made it hard to talk for too long, hard to teach. Even though I constantly carried a pocketful of mints and a huge cup of ice water and prayed I wouldn’t be overcome with a cough when I had to say something at a meeting. 

The spring break after the first anniversary of Mom’s death, I decided to drive to Indiana for a time of rest and self reflection. Ten days or so before I was set to depart, my BP went nuts. It took longer than it should have to convince my doctor that something was up with my BP because it was mysteriously normal ONLY when I was in his office. He told me to get a new BP cuff. I did. The results were the same. I insisted on coming in and having my BP checked again and again, and finally he saw what I saw and put me on one then another and then a third medication. He ordered more testing. 

I refused to let this stop me from going to Indiana because I knew I needed some time to reflect on losing both parents so close together. I backed off of the Clonidine because I knew it would make me too fatigued to drive. During the six hours it took me to get to Indiana, I resolved to let this trip be the catalyst for a change in perspective. I decided to try to let go of the some of the grief from all of the loss and all of the heartbreak—not only from losing my parents but from years of dealing with spine issues and special needs parenting. I decided to stop looking backwards and to start looking forward. Everyone has heartache and loss, I told myself. Time to get over myself. 

Within 36 hours I was in the ER learning I had a large mass in my mediastinum. The ER doc could not emphasize enough that the likelihood of it being cancer was high. It was 2:30 in the morning. I was too tired for this kind of news. 

As I tried to sleep (alone, in a hotel, far from home after just being told I probably have cancer), I berated myself. How could I have missed THAT? Why didn’t the SEVEN doctors I consulted look there? I was mad at them for not finding it, mad at myself for not somehow pushing harder. Then I learned how incredibly rare it is to develop a mass there, and I realized I couldn’t blame them for playing by the rules of probability. The chances of cancer of the thymus? One in a million. 

Weird.

Trigger Warning: Navel gazing, overthinking.

So, what's it like to, you know, have cancer? The short answer? Very, very weird. (I guess the shortest answer would be, "weird," but I don't think that does it justice).

On that drive to Indiana, when I went to spend a couple of days alone, I felt a joy and freedom I hadn't felt in a very long time (if ever). I had weathered the illness and loss of both parents and unexpected and difficult surgeries for Ren and Stow. And I had, finally, after many, many years, put down a lot of the things from the past that were weighing me down. It turns out this was all in preparation for life's next challenge, which literally showed up a few hours after I got to Indiana.

Anniversary flowers

Funny.

*****

Friday was my last day of work. I was tantalizingly close to making it through the whole semester. So close. Going from cruising speed to zero is a mind-boggling experience. So is having people suddenly worrying about and feeling sorry for you. But, so is suddenly realizing why you have been feeling all of the aches, pains, and other symptoms. Once you know why you've felt that way, it is impossible to ignore, and suddenly you feel like doggy doo and stop pushing. So weird.

Not only do I have thymoma, which Pink/Falcon has dubbed "Thy Mother," it is also constricting my lungs and may or may not be causing cardio and vascular issues that are also real. I'd like to go back to my strategy of not going to the doctor. When you don't know what's wrong, it's almost like nothing is wrong.  

Anniversary tulips

In a few days, I will have surgery and learn about things like margins and stages, but today, I am blissfully unaware of what the future holds. I think I will enjoy my freedom by having a coffee at my usual Tuesday spot. Then I think I'll get my grades in and enjoy the amazing weather. I've got a couple of more Lego botanicals to build and a book to finish. And, I suppose I have a surgery to prepare for. All things in time. 

See you on the other side.*

Christmas bonsai trees. (I'm telling you, I have a backlog of Lego Botanicals given to my by loved ones. It turns out I really love flowers and I really love Lego. Who knew?

*Of the surgery, obviously. I don't plan on going anywhere anytime soon.

Quiet Moments of Reflection

Before my recent posts, I hadn't published one in nearly two years, so let's see if I can catch everyone up.

Hmmmmm. Let's see...my mom got sick in late-ish 2024 and died in early 2025. I think in terms of semesters, and spending time with and then losing her is how I spent fall '24 and spring '25. When the 2025-26 school year started, I thought maybe the hard stuff had ended (after all, I'd lost Mom and Dad in pretty quick succession). Instead, Stow tore his ACL in August and had surgery in September, and right before Thanksgiving, Ren had his eighth (8TH!!!!!!) spine surgery to address the fact that his right arm had stopped working consistently. Fall 2025 was my first two-surgery semester. Surely things would be better in the new year!

After feeling really stuck in processing my grief, going through my first Thanksgiving, Christmas, and New Year's without her, while also stuck at home caring for Ren, seemed like a real low point. On the anniversary of her death in late January, I decided to celebrate by going to Culver's for a scoop of the flavor of the day (her favorite, no matter what the flavor 🤣), I had hopes of playing board games with Ren and the kids. Mom was a game shark, and she loved playing board games. I thought we could all reflect on our good memories while doing these two simple things that she loved so much. 

If you've read this blog for a while, you KNOW my plan for a simple evening thinking about Mom was a little too much to ask. Here's what actually happened:

1. Two out of three kids refused to go to Culver's (in their defense, they were varying degrees of sick), and the third went but refused to engage in conversation because they had gotten overwhelmed by something completely unrelated. 
2. Ren and I talked about memories of Mom, but, on a good day, he can only remember as far back as what he ate at breakfast, so that brief conversation ended with both of us eating in silence (lol),
3. On the way home, I realized I had forgotten to get a hamburger for one of the sick kids, so I decided to go through the McDonald's drive-thru, which elicited opinions from my two passengers. Ignoring those opinions, I ordered the food, paid for it, and then promptly drove away without stopping at the pickup window, which meant I had to turn around and pick up the now-cold food. How nobody in the car noticed I drove away without the food, I don't know, but when I got back to the window, the McDonald's employee helpfully pointed out that I had forgotten the food. Thanks. Thanks a lot. 
4. When I got back from the second stop at McDonald's and got out of the car, I noticed a gas smell. I asked Ren and a kid about it, and both told me THEY HAD BEEN SMELLING IT FOR AWHILE 🤯🤯🤯. I suggested that smelling gas is not usually a good sign and that we should call the gas company.
5. Hearing my description, the guy on the phone told us to evacuate the house immediately without turning anything on or off. So much for game night.

The children were already dysregulated, so I think you can guess how it went from there. Two children followed Ren's instructions literally and walked out of the house, through the back door of the garage, through the yard, and to the sedan parked in the driveway. They turned that car on and sat so close to the house, they might as well have been in the garage. When I told them to move the car, they both said they couldn't drive because their feet were too cold because THEY WALKED THROUGH THE SNOW WITHOUT THEIR SHOES ON BECAUSE REN TOLD THEM TO HURRY. Mind you, they had to step OVER their shoes to leave the house. The third kid refused to leave because they wanted to eat their McDonald's, and they thought they'd keep the cats company. The dog, meanwhile, ran away and tried to get into the neighbor's garage to see if they could play with their dogs. 

I think at the point where I was going back and forth between the kid in the house, the kids in the car, and Ren trying to explain the situation to the neighbors, I realized that my dreams of peaceful reflection were and had always been a fool's errand. Eventually, I left one kid to die (or, hopefully not) in the house, convinced the other two to move the car to the curb, and secured the dog with the neighbors because I could not imagine squeezing her into the car with the four of us. Then I got into the car with Ren and the other two kids to warm up from the 20-degree weather. 

If you think that was the end of it, you clearly haven't been around for long, because once I was in the car, the three out-of-sync people in the car with me lost it. One repeatedly questioned whether we really needed to leave the house. Another worried relentlessly about the cats but also the thing that was stressing them out when we went to Culver's. The third person ramped up higher and higher from the anxious energy of the other two until they were loudly imitating them, triggering further reaction. It got so loud in the car, that I told that kid to start driving. Somewhere in the back of my head, I thought the motion of the car would soothe everyone, like it does when you're trying to get a crying baby to sleep. Also, I didn't want neighbors to start coming out of their houses to see what all the noise was about.

Driving around the block didn't help, but at least the noise was moving at a decent clip so no one had time to come out and see what was going on. 

Fortunately, when we got back to the house, the guy from the gas company was pulling up. I jumped out as fast as I could and took him to the house, where he discovered a leak in the pool gas line. We didn't die, but I am not sure I will ever be the same. 🤣🤣🤣🤣🤣

Indiana Sunset the Night I Learned about Brian

Anyway, that's how January ended, and once I got past the first anniversary of Mom's death, I felt a little lighter even though I didn't get a chance to have a meaningful moment of reflection. Also, I knew I'd be going back to Indiana to visit her grave and see old friends in just over a month, so it felt like I was finally starting to process some grief. I was looking forward to the moments of quiet reflection I hoped to have when I was away on my trip.

We all know how THAT turned out!

What IS That Thing?!

 If you haven't seen the previous post, read this first.

I'm sure I did what anyone else would if they were far from home, having just learned they have a chest lemon. First, I slept for a couple of hours, sent messages to a couple of doctors, and called Ren. He reminded me it was the anniversary of our first date and told me nothing terrible would happen on such a beautiful and important day. The original intent of my nights alone in the hotel was to spend some time relaxing and reflecting on the past year. So I tried not to let the news stop me. I went for brunch and explored an amazing bookstore, where I mostly sat and tried to catch my breath.

Since I was exhausted, I returned to my hotel room, where I opened all the windows, turned on the women's college basketball game, and took a really long nap. It was such a gorgeous day, warm and breezy--perfect weather for sleeping. But I imagine you don't want to hear about all of that. Like I did, you want to know what that THING is.

Let me tell you, it's not so easy to get the answer to that kind of question. While you're waiting, you might even have time to name the thing you're trying to identify. Having just lost my mom to cancer, I am acutely aware that persistence is key when you find things in your body that aren't supposed to be there. Within about a day, I had several appointments scheduled. Then those appointments led to more appointments. I also continued accompanying Ren to his appointments (more on that later, I guess). By the end of week 3 of knowing about Brian, I had had an MRI and was headed to a thoracic surgeon.

I already knew what the doctor was going to say before she told me. How could it not be the super rare cancer I'd been reading about? I don't know why or how, but I knew this months before that appointment. I've been coughing for years and just not feeling like myself; it had to be something, and pretty much everything else had been ruled out. The good news is that this kind of cancer is super slow-growing and can usually be managed with surgery if caught early. 

The weird thing about news like this is that it's really hard to figure out who to share it with. I'd rather not talk about it because I'd rather not talk about myself. Also, I don't like pity. But, also, the news is a drag, so I kinda want people to cheer me up. It'll be fine, but it'll stink for a little bit. I'm going to drop balls and may have to miss some stuff for the kids. I guess I'm going to have to really figure out how to chill. Sigh.

Anyway, I leave you with two amazing pictures a friend created when he heard the news. I really do have the best friends!

The Life (and Hopefully Death) of Brian

Meet Brian the Chest Lemon. Apparently, Brian has been making himself comfortable in my mediastinum (don’t worry—I had to look that up, too) for a while now. I had a feeling he was there, but no one could figure out what was causing the various symptoms I was having--like a persistent cough and a change in my voice. And, since he’s literally 1 in a million, no one thought to look for him. Hide-and-seek is no fun when you don't know you are playing it! 

Brian was outed some time in the early hours of March 9th at an emergency department in Bloomington, IN. I was in Indiana for a long weekend--to see family and friends and, ironically, to spend some time in self-reflection after losing my mom a year ago. This is what happens when I try to take time for myself, you guys; I find a chest lemon. Randomly discovering a tumor at a hospital 5+ hours from my Ren and the kids was NOT on my itinerary!

So, as trips go, my meditation and rejuvenation-focused weekend was a bust, BUT I got to spend quality time with friends and breathe the air of places I love. Also, if I hadn't taken the trip, and if my friend hadn't insisted I go to the ED, Brian would still be enjoying his anonymity. Plus, my friend and I had a lot of time to laugh and talk in the waiting room for six hours. They came to get me from time to time to take me to do tests before dumping me back into the waiting room to, you know, wait. I guess once they determine you are not having a heart attack, they don’t mind keeping you up all night. My philosophy has always been that most ailments heal on their own while people wait in the ED.

Sometime around 2:30 in the morning, they called us into the triage room to tell me my symptoms were likely due to some new meds I was taking, and, oh also, did you know you have this giant thing growing in a part of your chest that you can't even locate because no one who is not a doctor or taking anatomy class has heard of it? My friend seemed much more surprised than I was. I imagine her response made more sense. I was so calm, in fact, that she asked if I had somehow already known about Brian.

I hadn't.

To be continued....