Earlier today, I recorded a little podcast (still in digital form thanks to voice-recorder software that’s failing to work with my Vaio) as Lina and I traversed the built-in skyways and "subways" (sans any actual train system) that link many Rochester buildings with different Mayo towers--so you can grab a Subway sandwich on your way to a shoe shine and lame doo-dad shop before getting stuck with needles or donating your kidney to science. Despite those virtues, however, it's a bizarre and poorly designed infastructure crippled (pardon the term) with counter-intuitive turns and connections. In fact, it's easier to walk outside to many places, including our "connected" hotel. But it's Minnesota, and there's snow on the ground. So if you’re in a wheelchair, like so many people here, it’s best to roll in comfort. On the other hand, many of the walkways are super-warm, and if you’re not in a wheelchair but also have some trouble doing a lot of walking (it can be miles to get back to your room through the indoor hallways), the “subways” only cause you more distress.
A funny tidbit about our podcast: We recorded it on the device we used to record the consult we had with one of Mayo’s top surgical minds. He really was the most impressive person we had met here. He offered to go beyond his assessment (that issues on the surgical side of my condition are stable) and “shop around” his thoughts to other surgeons and radiologists, concluding with a letter he’d send to both my home and temporary holiday-season address in New York. It might have been illegal to record this conversation, and I know this. I haven’t looked into Minnesota convo-recording laws yet. (I know it’s illegal in Cali but not in New York, for instance.) Still, it’s good to have a record of exactly what docs tell you. And if they’re not admissible in court later down the road (I’m more than half-kidding), so be it. Conversation tapes don’t always have to be legally made to inspire doubt on the part of lawyers and judges. Sometimes tapes lead to cause for investigation! In this case, it was just nice to know we have our surgeon’s thoughts on record.
We’ll perhaps use the recorder, tomorrow, with more ambition. We meet with MMD (my [primary] Mayo Doc) after his series of tests to learn his concluding thoughts. He moved up our appointment from Friday to Thursday even after I left him a note at his giant departmental desk explaining that we hope he received our biopsy slides from NYC (finally confirmed minutes ago), and that we hope he consulted with specialists who could be helpful in this mystery diagnosis procedure—in our case a neuro-immunologist and/or stem-cell-transplant-experienced oncologist who has seen patients with my history as well as some other specialists. Our response to this note? We received a newly printed itinerary of medical appointments from a secretary at the surgeon’s office an hour later. In other words, there was no personal communication. We just got a sheet saying that we now have appointments with specialists in the aforementioned departments next week and in January. Meaning, MMD expects us to stay in Rochester, M.N. for one week, doing nothing, to see the first doc, and then return in January to see the other before seeing him again.
Hell no to this, we say! MMD had his chance to be comprehensive and unusually helpful on Day One. We came to him for the Mayo approach of piecing together something complicated. He took his time, wasted ours, and didn’t think big or involve his colleagues in other departments, thereby breaking the unwritten but widely believed promise that Mayo does things differently than other hospitals. As I explained to Lina, it’s not that Mayo is renowned for always gathering a group of famous minds around a table to discuss your case from every perspective; it’s that they’re famous for the corporate, branding-specific concept of “group practice”: putting top specialists in one center together so you can be referred around in one medical center, thinking you’re getting the best of everything (often the case, but debatable) before a final decision on your case is rendered (also often debatable).
In the instance of the aforementioned baby with possible cystic fibrosis, the system seems to have worked: the parents arrived, thinking their kid had stomach problems, and were soon sent to a pulmonary doc who moved things in different directions for them. Neurologists—particularly the sort who don’t deal with the brain but with the nerves in the limbs, say—don’t seem to be as insightful and broad-thinking, even though their disorders often involve the complicated immune system. In my experience, the majority of them are technicians: they check your reflexes, prick you with pins, gauge your muscle potentials with needles, and then shock you with electricity before reporting the results. We came here for more: To meet a doc or team of docs who can do all this stuff with expertise in other fields of medicine and more systemic strategies. Let’s see if we get such results; after today’s events, we’re not optimistic.
Lina says that if MMD asks her tomorrow why a wire is sticking out of her sleeve (the wire from our voice recorder), she’ll say it’s connected to the battery that runs her wee, little heart. When she first said that, we laughed sarcastically. HAHAHA. Now that it’s been more than an hour since the comment, the thought seems to hang in the air like a matzoh ball. There's more gravity and truth in the mix.
Some comedy!
Because now that MMD has changed my last appointment with him, we do have a free 36 hours in Rochester. “It could be fun staying here,” said Lina. “We could go to the mall and holiday-shop!” We call this the D’Orazio optimism, but even Lina couldn’t convince herself and started laughing at her suggestion. Still, I don’t think she was kidding 100%, and I’d much rather see this quality in my partner than the “survivor realism” coloring my consciousness—a worldview most people would probably just call "depressing negativity tinged with black humor" despite my attempts to explain that I refuse to artificially “think positive” when I don’t have data supporting the future arrival of positive news. Is there something actually wrong with just not thinking or taking things as they come as opposed to “thinking positive?” I think I can still be buddies with Lance Armstrong and the Us Weeklyish live-strong camp while maintaining a little internal relativism and not trusting that everything is gonna be OK (unlike other patients here, J.C.--to say nothing of "Adonai"--and I never got along, believe it or not).
Perhaps I should have bought myself some prayers (yes, they're for sale!) in the Mayo Clinic gift shop (seen above), outside of which Mennonite volunteers direct people into elevators or explain where the history of Mayo exhibits lie deeper in the Rochester “subways.” I’d prefer reading Steve Martin’s newest book, in which he breaks down the germination of his absurdist comedy. This is a guy who knows something about how the world works. (It doesn't.)
Lastly, inspired by a Conan O’Brien rerun I watched on my laptop, here’s a medical SAT-style analogy:
(Most) neurosurgeons are to (most) Peripheral Nerve Neurologists as Confidence is to what? The answer: Lawsuit-worried, non-committal wishy-washiness found in people who watch their own asses before doing anything else. Seriously: Our surgeon today was oh-so-cool. He actually seemed to believe in what he was saying, cementing the notion that it's guys like these who should be consulted on all matters--even if they're wrong. Perhaps we should have asked him where to eat dinner--at least he would have said something with conviction. Last night, we had some "authentic" Chinese noodles that make 99-cent ramen taste five-star. But if he had told us they were good as we desserted on one shared Twix, we would have given him a badass high-five.
More as it comes…
P.S. We’re currently in a Hilton, and there’s a copy of Conrad H.'s “Be My Guest” in the bureau drawer (such pride on which to draw--huh, Paris?). I’ve never seen a copy of this book even though I’ve stayed in Hiltons, so I find it sorta fun. Looks way more pleasant to read than more Mayo brochures—on everything from local activities (support groups, Dutch restaurants, yoga) to self-prep for various diagnostic tests. (My favorite directive? "Don’t use any mind-altering drugs for 18 hours." Who can—and should--stick to that? Talk about making your life really lame.) I shall perhaps give the kitsch book a shot after scouring the Internet for something about how to avoid making bad decisions like flying to the middle of nowhere for a Costco-quality attempt at getting all the medical advice you can from a so-called “elite institution.” What we’ve learned from all this so far? You don’t need to land in Rochester, M.N. for a comprehensive attempt at getting to the heart of a serious medical manner. You just need to find a well-connected doctor with a big, generous, highly functioning mind who actually cares about you. Meaning, it may be even less possible now than before.
But don’t leave this blog all blue: Remember, I’m the one who’s still kinda purple! And I have to say: It’s fun not seeming like an obvious Eastern European-brewed Ashkenazi-Caucasian Jew all the time. Especially in the friendly heartland, don'tcha knowww…
p.s. Says Lina to me: "I think you find inspiration in the tragedy of this trip, Ad." To this I just smile. "Well, shoot, inspiration is my middle name."
