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.