Making Me Understand: Pat Fish of the Jazz Butcher Conspiracy

(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)

This certainly seems to be the week for it, so I’m going to blame Mark Zuckerberg for the way I’m feeling right now. No, the Facebook outage did not depress me (in fact, it prompted a friend and I to commit to “Zuckerberg-free Mondays,” which start next week). Nor did news of the evil behind the scenes at Facebook particularly surprise me.

Instead, I am laid low because a musician whose work I have loved for most of my life died suddenly this week. That news alone would have been enough to put me in the dumps. But because of Zuckerberg’s infernal machine, I not only heard about his death — I had been able to connect with him as a Facebook friend a few years ago. I only managed to see his band perform live once. But suddenly, Pat Fish was among my friends on Facebook, right there alongside my mother and my preschool classmates and my online pals.

This was exciting, because now I could tag him whenever I posted a song of his that I appreciated. So I did, not expecting much response, but often being pleasantly surprised to get one:

I’d loved the different iterations of Pat’s band, which was called the Jazz Butcher or the Jazz Butcher Conspiracy, depending on the release, since hearing a song of theirs on the radio in high school. The track, “Hungarian Love Song,” made you want to dance, but not the way people danced in clubs. It made you want to learn a form of dance you’d never even seen before. The lyrics cheekily described a love affair leading to cannibalism. My teen self, ever alert to quirkiness, responded immediately, and I set out in search of the album the song appeared on. It was never easy to find Jazz Butcher releases, and that’s the only one I have on vinyl.

As I delved deeper into the Jazz Butcher’s oeuvre, I found a band with multiple personalities, my favorite kind. They could rock hard but also were liable to charm the pants off you. There was a good deal of saxophone, but it wasn’t deployed in a cringey 1980s way. In college, finding out that someone I was interested in owned a Jazz Butcher cassette raised my interest in them immeasurably (whether deserved or not). There seemed to be a Jazz Butcher song for every mood I had. Like one, simple on its surface, sung from the perspective of penguins (“We are penguins./Only penguins./We are flightless./We are standing in the snow/Without food./`Coz we’re penguins/It’s what we do./On the ice floe of unknowing./And it’s freezing…”) that disarms you with its poignancy. Danceable numbers like “She’s On Drugs,” narrating a woman in the midst of collapse with ranginess and humor — but remaining ever the gentleman. There are lots of angels in the songs. And there is Shirley MacLaine. This music has accompanied me through adolescence, college, and my first experiences with independent living, heartbreak, ambition, relationships… all of it.

J. recently got us a turntable, after many years of living without one, and I cued my one Jazz Butcher album up just the other day. As I just wrote to a friend who is also mourning Pat, “I miss all of it. I miss the world how it was, where you would put a record on and just sit there listening to it. It wasn’t a backdrop. It is astonishingly hard to find the time for that now.”

I forgot the quirk of this album: the labels were put on reversed. So I started listening with Side 2.

The same weekend that I listened to this album for the first time in ages, Pat was to planning to play a live set on Facebook from his living room, which he dubbed Fishy Mansions. I’d put it on my calendar, and planned to tune in to hear him for the first time since he’d done a similar gig during early pandemic times. I knew the band had recently recorded an album and was hoping he might preview a track from it. Instead, Pat came on to say he hadn’t slept the night before, that he’d had sleep apnea, and he was sorry, but he wouldn’t be able to play for us. He was sipping a pint, as always, and cuddling his black cat, Raoul, as always. He seemed to be in some respiratory distress, though. I was unnerved, because a couple of years ago, he’d been treated for cancer. I identified with him on that level, as well — we’d both emerged from cancer.

Since I added Pat as a friend on Facebook, I got to know him a little bit. The first thing to know was that he was a huge fan of cats. In reading posthumous tributes, I’ve lost count of the number of people who have mentioned that he wrote them to wish their cat a happy birthday, or commented on a cat photo they’d posted.

I didn’t post any cat photos. All the same, I unexpectedly found myself on the receiving end of unsolicited reactions and comments on my posts from Pat. Supportive ones when I posted about being a cancer survivor. But other things too:

All of a sudden, Pat was not just the source of music that had formed the soundtrack of my adult life. He felt more like a friend, one who knew how to contribute in just the right ways on social media. And Tuesday morning, I opened up Facebook to learn he was gone — suddenly, peacefully, but gone. I won’t have any more opportunities to convey my appreciation for what his music meant. I won’t get to watch him play another live gig from his living room, cat jumping in and out of frame.

A close friend of his posted to a forum today:

He was very happy over the last few months of his life, probably more so than I’d seen him in a long time, and it was mainly down to you lot. He was absolutely knocked out by your response to the “Live At Fishy Mansions” sessions. He was pretty much broke before he started doing them but everyone’s generosity with the tip jar meant that his financial problems were solved – the money from it kept him in food (not that he ate much!), beer, smokables, and beefy biscuits for Raoul.

So there is that: We, his fans, had helped him to not die destitute or in despair. It should feel like enough, to know that an artist who gave you so much felt acknowledged and tangibly appreciated at the end. But — all because of Zuckerberg — he was not just an artist to me. He was MY FRIEND. And he is gone when he should be here to receive the torrents of adulation that a dead artist gets.

Another celebrity I follow on Facebook (but who is not a friend), legendary illustrator Sandra Boynton, posted this photo yesterday, which she took in her office as the sun set:

Photo by Sandra Boynton

Sandra, I promise, I will absolutely try. But it will take a while to get over this one. Rest well, Pat.

Living a dream

I had my umpteenth round of scans this morning (all is still well). Now that I’ve lived here for three years, a sort of routine has settled in to scan days. I do miss some things about scan day in New York — the anticipatory subway ride (when there were no delays), having my IV wrapped in a bandage for the strange six block walk between one scan location and the next, the mad dash to Dr K’s office as soon as I slid out of the MRI machine, and the fascinating images of my brain in cross section parading across the screen. I definitely miss my post-scan lunch of spanakopita and salad (or if I felt indulgent, fries) across from the hospital.

There are things about scan day here which are better — I live a ten minute drive from the scan facility. The disgusting barium sulfate of scans past has now given way to a drink I like to call “sketchy water.” Today, it was served chilled.

Sketchy indeed.

The wardrobe angle is where things get a bit odd. They are very vigilant about metal in clothing at Johns Hopkins. There is metal in everything these days, they insist. Even your underwear! Hence the sartorial innovation of scan pants (today they were shorts, in recognition of summer… which ignores the fact that it’s about 50 degrees Fahrenheit in the MRI room):

The full ensemble, complete with MRI-safe mask, is quite fetching:

Today the technicians had a hard time stuffing my unruly hair into the limited space for it before closing the plastic frame over my face. My ear plugs kept falling out. I felt a flicker of annoyance that threatened to turn into panic. But after twenty MRIs, was I really going to start having a hard time with it today? That was the extent of the pep talk I gave myself before sliding into the machine. All the rest of it — slight discomfort giving way over the course of 45 minutes to almost excruciating back pain, the failure of my brain to settle on a useful direction for a guided meditation, the resemblance of certain of the machine’s sonic patterns to music I’ve heard elsewhere — passed, as it always passes. Having frequent MRIs has taught me something about endurance which others learn via actual physical exertion… or by living under perpetual existential threat, which is certainly something on my mind as I read the headlines each and every day.

I’ve gotten chummy with one of the technicians, C. Today she greeted me like a friend, and said that it seemed like I’d just been there. (Four months’ time elapses differently during a pandemic.) While I was in an empty waiting room drinking my sketchy water, she stopped by to chat. She mentioned that a friend of hers yesterday told her how grateful they were for everything she does. She said, “People always just say that. They don’t realize that we all have families and homes and we have to do this.” She sounded frustrated. I can’t imagine having to put up with constant expressions of gratitude which miss the mark.

This week, a piece from the Atlantic caught my eye: “I’ll Tell You the Secret of Cancer.” As predicted, there were no secrets. It was a very handy explanation, for those who were not yet aware, that when one is facing cancer, a positive attitude and fifty cents will not even get you a cup of coffee. Any opinions to the contrary are unscientific, and potentially harmful.

I know I’ve made cancer seem like a whole lot of fun here on my blog. Time after time, this approach has helped me to find the humor in a crappy situation. Perhaps it has helped me gain some distance from the immediacy of the threat. As anyone who knows a comedian can attest, however, comedy is not typically born of a perky positive attitude. It is a technique that helps us twist unpleasantness into laughs, rueful as those laughs may be.

A week ago, I went to see my ocular immunologist, Dr B, up in Baltimore. I was consulting with her on the matter of a cataract I have developed in my right eye, as a result of prolonged use of steroid eye drops to treat the eye inflammation my cancer drugs brought on. (Currently, when I need to see clearly, I am closing my right eye.) She has a lot of experience operating on patients just like me who are dealing with eye conditions as a result of drug therapy or autoimmune conditions (I seem to fall under both of these categories, because I am actually that special).

Dr. B is also expecting a baby. She’s stopping work at the end of October for a few months. So I get to decide if my cataract is urgent enough to operate on right now, or whether it can await the end of maternity leave. Also, I get to decide whether having cataract surgery makes sense given the number of floaters I have in my eyes (also courtesy of all the inflammation). Dr. B warned me that after the operation, my eyesight will improve, and that will bring the floaters into sharper focus. I’m already swatting at them thinking they are mosquitoes. I can’t imagine how much worse that might get if I suddenly see their contours more clearly. I have a checkup with Dr. H (my local retina guy) next week. I’ll see what he says. He has mentioned in the past that there is a procedure called a vitrectomy that can help with floaters. It involves removing the vitreous membrane from your eye and replacing it. That sounds simultaneously cool… and also not at all anything I’d ever want to deal with. What I wish I qualified for is a complete eye transplant. A reset. (Unfortunately, Nurse Practitioner K told me long ago that cancer patients don’t get donated organs.)

So here I am. No more cancer. Other problems cropping up here and there to challenge my everyday existence. Also, certainty that I am lucky to be here having these problems I have. When I got home from my scans, J. had made me a delicious meal to break my fast.

Life-giving break-fast

It was a not-so-small, good thing. Then Young A showed up and I hugged him as my good scan results came through and I thought, but did not say, “I get to keep being your mom.” Young J texted me from drum line practice and when I told him my results, he replied, “Yay!”

I am not living the dream, but I am living a dream, a dream perhaps also once dreamt by all the people responsible for developing the drugs that got me this far, all the investigators and all the participants in clinical trials and the technicians and the clerks and the people who clean the research labs and thousands more people I’m not even thinking of. To all of them, thank you. It is a good dream to be having.

Going on six years

(Just a little grizzled)

It is April 14th 2021. Day n+365 ogp (our global pandemic).  I am pretty sure that I spent yesterday the same way six years ago —  that is, lying in bed. Six years ago I either had a fever or felt feverish, I can’t recall. It was early spring and while my bed was located in a different state, and faced east, not west, the same blue blanket was on it. I was exhausted then, and I’m exhausted now.

The difference in the exhaustion is significant. Six years ago, I didn’t know that days later, I’d wake up with language problems, courtesy of a nine-star constellation of tumors in my brain. This freaked almost everyone out, including me, although I did enjoy typing up a blog post full of language errors I have never corrected, while in the hospital for the night.

Yesterday, I was feverish and exhausted and everyone was falling over themselves to commiserate, because it has probably befallen them too — it was nothing more than the Second Vaccine Blues. My day in bed was in the service of health, not illness. I temporarily got sick in order to stay well.

I didn’t do a thing all day yesterday. And I had plenty to do — paid work, unpaid work, and worrying about a loved one’s outcome from surgery (all going well). This is not to mention, of course, the significant amount of parenting I still insist on doing, in spite of my children now being old enough to empathize, to inquire how I am feeling, and to fetch me a pop tart and some apple juice at 5 p.m. without a hint of judgment, simply because it was the only food that sounded good to me.

Also reminding me how things were six years ago this week: J. He still has the broadest shoulders in the universe, which yesterday balanced an array of tech support tasks for his work, keeping after Young J to catch up on missing school assignments as the marking period slams shut, and then he went out grocery shopping and, when he got home, also made Taco Tuesday happen, without missing a beat. I could scarcely think of emerging from my blanket fort to eat dinner, but I’m so glad I did, because the tacos he prepared came the closest to tasting like those I ate at a taqueria in Guadalajara, on my very first trip to Mexico.

My Proustian recollection-through-taste then became a full-body experience of remembering the sudden chaos of my brain, the blooming trees on our block, and the appearance, just when we needed her most, of Mom. We walked down the street as quickly as I dared (which I seem to recall was very slowly) and took a selfie with a blooming tree.

Six springs ago in Brooklyn.

I remember the excitement of that time, when I was probably the closest to death I’d ever been. But the steroids turned that gravity to gregariousness, and I remember a two block walk taking 45 minutes, simply because of all the people I needed to stop and talk to at great length. Perhaps the urgency my conversations had then, at its core, was a near-certainty that I wouldn’t make it?

I’ve written here about the incomparable drama of a sudden onset of metastatic disease. I can so easily imagine becoming addicted to that sort of heightened sense of life. Yesterday was not that. Yesterday was me in the same twelve-hour trench that millions of people have already experienced. We were laid low by the vaccine, but we resurfaced, just as others told us we might. We had the temporary experience of our immune systems flaring up, as I did in a much less benign way when I was on immunotherapy in 2014, but this time the effects were not long-lasting or remotely life-threatening. I am learning to be grateful for something unremarkable. Something relatable.

It’s a good time to celebrate life, and I will, later on this week, on April 16, anniversary of the Worst Possible Day — days, actually, since my initial melanoma diagnosis also got handed down that day. I am grateful for the science that made it possible for me to still be here, and to the scientists who went into overdrive to make our world safe once again. I will never stop marveling at their efforts.

Making Me Understand: “Alguém Cantando”

(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)

Things have really settled down for me in the past month. My Crohn’s is well under control thanks to medication, I’m no longer afraid of food. I am even halfway to vaccinated against Covid. Spring is coming on, and I feel pretty good. Ergo, it was high time for an attack of saudade.

I was born in Brazil — my family lived there for a couple of years while my dad was on assignment for work. We returned to the U.S. when I was six months old. I stayed just long enough to acquire Brazilian citizenship, which I keep meaning to officially renounce (it’s a long story). But I have now lived long enough to see how geography and genealogy leave their traces on you. I never saw my birthplace again, never spoke Portuguese, but I am drawn to Brazilian popular music so strongly, it sometimes feels as though in a past life I was a bona fide Brazilian.

This year I am staring down the (artificial) milestone of turning fifty, and I suddenly feel that there really is no more time to lose. I am trying to honor that sense of urgency, a sense I definitely had back when I was gravely ill, but which has steadily faded as the threat to my life has. I want to get more of my writing out to readers. And when something calls my attention especially, I’m trying to figure out why that is happening and what I might make of it.

A couple of weeks ago, I was looking up a song by Caetano Veloso that I knew from a live album, to see what the studio version sounded like. I wound up listening to the album, Bicho, in its entirety. It was recorded after Veloso spent a month in Lagos, Nigeria, and the influence of his time there can be heard clearly in many of the tracks. But the final song on the album, “Alguém Cantando” (Someone Singing), sung primarily by Veloso’s oldest sister Nicinha, is a quieter, more contemplative number — the perfect accompaniment to hours of brooding saudade.

Alguém cantando longe daqui
Alguém cantando longe, longe
Alguém cantando muito
Alguém cantando bem
Alguém cantando é bom de se ouvir

Alguém cantando alguma canção
A voz de alguém nessa imensidão
A voz de alguém que canta
A voz de um certo alguém
Que canta como que pra ninguém

A voz de alguém
Quando vem do coração
De quem mantém
Toda a pureza
Da natureza
Onde não há pecado nem perdão

Someone singing far from here
Someone singing far, far away
Someone singing a lot
Someone singing well
Someone singing is good to hear

Someone singing some song
The voice of someone in this immensity
The voice of someone who sings
The voice of a certain someone
Who sings as if for no one

The voice of someone when it comes from the heart
Which keeps all the purity of nature
Where there is neither sin nor forgiveness

That’s it. The simplest melody and the vaguest possible lyrics, perhaps deceptively so — the song applies to nothing and no one, and to everything all at once. The song is about The Song and The Singer. Nothing is especially unremarkable about it… until that very last line, which raises all sorts of questions. There has not been any hint of sin or forgiveness before that last line… or has there? A straight appreciation of the art of the song, and then the last verse sends the song spiraling into a different direction. If there is neither sin nor forgiveness, doesn’t this suggest that in fact there was, otherwise why bring it up? It calls into doubt the heart and the purity thereof. It calls everything into question that we’ve heard. Is this song actually a form of apology? (If so, was it a successful one?)

Once I heard this song, I found I couldn’t stop listening to it. It invaded my ear, occupied my brain, became an obsession. The only way to get out from under it was to: print out the chords, take the lyrics sheet down to the piano, discover that it was much too high for my vocal range, transpose it a bit further south on the keyboard, and begin my laborious process of learning to play and sing it. The Portuguese isn’t a natural fit for my mouth, so there are contortions I need to learn. There are places where I need to sustain notes, and I need to learn how not to run out of breath. The exhausting physicality of singing came back to me (I took singing lessons, briefly, in that long-ago time before Young A. was born). And then there is the emotional component of singing — I don’t often sit down to learn to sing a new song, but nearly every time I do make time for it, I am overcome by emotion and unable to sing, the first few times through. Some might say this means I haven’t been letting myself sing, and the release when I do is all the more intense. But after five, ten, fifteen times through, I find I am able to manage.

I started the day today with a list of things I wanted to have accomplished by the time I went to bed (cf. the whole turning fifty, no time to lose, etc etc). So you might say this song hijacked my day. Sure, I took a walk, I ate three meals, and I seem to remember speaking to other members of my family. But what I will remember about this day was sitting at the piano, trying not to trip over the unfamiliar sounds as I try out broken chord patterns that will not overwhelm the perfect simplicity of the original recording. Will the sound of my voice singing this song ever make it into the world? I can’t commit to a yes or no just yet. I’ll sing “as if for no one”… but maybe I’ll record it?

Happy Spring, everyone. (Unless it is Fall where you are. Happy Fall.)

Hit it

Brick Wall, by Dennis Behm on Flickr, licensed under Creative Commons

I’m here to unload the contents of my brain after a dizzying few weeks. We have regime change at last, but it came too late to avoid a violent insurrection. We have lost half a million people to the pandemic whose year mark is fast approaching (for us, isolation began March 13). Texas froze over. A new Mars rover is roving. And I have a brand new diagnosis.

Although an immediate end to pandemic suffering is still not in sight, in my small sphere, I am happy to report Mom has gotten her first dose of vaccine and the second one is coming at the end of this week.

Another thing that happened in recent weeks is that I had my very first ctDNA blood test. ctDNA is a fairly new method of detecting tiny particles of circulating tumors in the bloodstream, and it is seen currently as an additional method for following up cancer patients. Perhaps one day, this “liquid biopsy” will become the standard of care for cancer survivors. I’d love to give some blood in lieu of the poisonous contrast dyes I get injected with every scan cycle (not to mention the radiation exposure). The good news came after about a week — my blood harbors no particles of tumors in it. Cool!

In recent weeks it was time to deal with other issues as well. After suffering digestive discomfort since last August, I was referred to a gastroenterologist to see what might be going on. An initial test indicated I’d need more testing, so at the end of January, I underwent my very first colonoscopy and endoscopy. As everyone who has been through these procedures knows, the preparation is the worst. I couldn’t agree more. By the time I arrived at the hospital, I was so ready to be knocked out, I was a walking Ramones song.

All was well until I woke up, reasonably clear-headed, and drank some cranberry juice. Once I’d gotten dressed, I waited in a chair for Dr. C to come speak with me. We had met once by video (an appointment to which she showed up one hour late; when I mentioned it, she snapped,”well, they added you to the schedule last minute” — so, clearly, it was my fault?!). This time, she walked up, said, “It’s Crohn’s, it’s probably not related to the immunotherapy treatment you had, my office will call you to set something up.” And then basically turned on her heel and went off to the next patient.

I woke up from anesthesia to a new reality: my new doctor simply did not have time to be humane, or human. I was a little unsteady, and they wheeled me out (hospital policy) to where J was waiting with the car. As the fog lifted, I found myself enraged. Nothing in my medical history thus far had prepared me for an encounter with such a highly-rated and at the same time poorly-behaved doctor — this was certainly not the kind of stellar care I received from Dr. P and her staff of angels (who probably ruined me for other doctors, with their unflagging commitment and compassion).

Dr. C’s office was not, in fact, calling me. I had to send several messages through the hospital portal before I heard back. In the meantime, it was easy to find evidence online of patients who’d had bad experiences with Dr. C, and also copious evidence of her engagement on Twitter. She’s apparently much more excited by doing continuing medical education for her peers than she is by treating actual patients.

But no matter, because I had already done my research and found a doctor at a practice closer to my house, Dr. O, whose video introduction on YouTube showed a practitioner who is patient-focused, who listens. I spoke with Dr. L over the phone, and he agreed I should switch to Dr. O.

Somewhere in the past few weeks I also saw Dr. H, my retina guy. Things have quieted down enough that I’m down to one steroid drop in my left eye every two days. I hope things stay quiet. At the end of my visit, I mentioned to him that I’d be going to see Dr. B, an ocular immunologist at Hopkins, to whom I’d been referred by Dr. C, the rheumatologist I consulted with a while back. I couldn’t be sure, but I sensed Dr. H was maybe a bit snippy when I told him I’d be seeing her. Whatever.

I drove up to Baltimore last week, the day after an ice storm. The parking garage I had to use was the same one we parked in when my father was dying. I still remembered my way around the hospital, unfortunately.

The visit to Dr. B was a wonderful experience, with kind and professional staff and state of the art equipment. I wasn’t expecting the number of tests that she’d conduct, but it made sense — I’m a very special snowflake in terms of the damage done to my eyes by my medication. Dr. B has about twenty patients on her roster who are, like me, dealing with the ocular fallout of immunotherapy or other cancer treatment. Her nurse asked me whether I was a nurse. Apparently I used quite a bit of terminology. (I’ve picked up some lingo in my long career as a professional sick person, I guess.)

Dr. B showed me images of the blood vessels in my eyes. Due to the extended inflammation in my eyes, the most peripheral areas no longer have blood flowing to them. It isn’t affecting my vision significantly, yet, but it’s very important to avoid any further inflammation. I drove the hour home with my pupils dilated, just as the sun decided to make its appearance after many days in hiding.

I did have a followup with Dr. C after my procedure, by the way, at which she laid out what she proposed as a treatment for the Crohn’s. She suggested starting with an older, oral medication, sulfasalazine. She intended to start me on a lower dose to see how I tolerated it, and then increase it. At the end of our chat, I informed Dr. C that I would be transferring my care to Dr. O. She was fine with it, but indicated that in that case, I should not start medication until I’d established care with my new doctor.

Here’s where I wonder aloud something I’ve been thinking about for a while: I have been a cancer patient for a long time now. Come April, it will be eight years. Has this prolonged experience with life-or-death situations made me an impossible patient to treat? I don’t even mean because of the multiple conundrums I bring to my caregivers. I mean because maybe having had cancer automatically makes you much more demanding? More uncompromising in terms of what behavior you will accept — or not accept — from your doctors?

As I settled into my new diagnosis of Crohn’s, a condition that is hardly mysterious and which many people around the world cope with, perhaps I was even, just a little bit, missing the urgency, the sheer drama of cancer? Obviously I have no desire to return to that type of drama. But the fact is, it’s what I know best. The idea that I could have a newly discovered chronic condition and not start meds for it right away was unnerving to me.

But Crohn’s is also a bit unnerving. Your digestive system turns against you at age 49? Just like that? Sometimes you’ll be fine and sometimes you’ll feel awful? As pointless as Googling my condition was when my cancer metastasized, so too is it pointless to try to Google what to eat or not eat when you have Crohn’s. It is highly individualized. Really no general guidelines beyond not eating too much at a meal, and what foods might help when you’re having a flare.

I couldn’t have imagined the timing of my visit to Dr. B in Baltimore and my first video call with Dr. O was important, but it turns out to have been. One of the things Dr. B made very clear to me was that starting sulfasalazine, as Dr. C had suggested, would probably not be a very good idea for my eyes. She asked to be put in touch with Dr. O to discuss my Crohn’s medication options.

This week, I met Dr. O. Her office had already impressed me by making sure they had all the records they needed before my appointment. Dr. O listened intently to me and asked questions to clarify. She admitted she wasn’t familiar with targeted therapy, so I explained it to her. She took many notes and planned to correspond with my many doctors, and most urgently with Dr. B. She prescribed probiotics, but warned me my insurance might not cover them. Sure enough, within an hour of my appointment, the pharmacist called to let me know the script would not be covered. But Dr. O did not leave me hanging. The pharmacist read me a note she’d added to the prescription, saying that in the event I couldn’t get what she had prescribed, I could use another, over-the-counter one.

It’s the little things, like that one, which build a patient’s trust in their doctor, because it meant she cared enough not to leave me hanging. It’s gestures, too — I saw Dr. B wiping down the chair in the exam room herself before I went in. That small moment showed me that she was more interested in just getting her patient in to see her than in feeding her ego by pulling rank and waiting for a staff member to do it.

I appreciate these things. I appreciate humanity in my caregivers. I think they appreciate my professionalism as a patient, which is definitely a thing I’ve had the opportunity to hone over the past eight years, particularly when my response to meds has gone off-script and produced side effects that very few people get and even fewer doctors see.

While I wait to start whatever meds are deemed appropriate for my Crohn’s and also for my eyes, I paw my way through my days with very little energy. This winter has sapped me of my last ounces of strength, motivation, and drive. I’m starting to look around and discover that there are a lot other people feeling this way, too: stuck, without energy, sapped of strength. It’s like a second pandemic, one of inertia.

This is what happens, I guess, when you internalize fear and stress for an entire year. When the very air molecules at the grocery store could be loaded with dangerous virus. When grandparents can’t hug grandkids for way too long. When kids only know their teachers in two dimensions (or maybe just one) and as a result feel zero accountability to them (and to the parents who keep trying to get them to be accountable). We just can’t go on like this, but we have no other choice. So we take a moment to look to our right and left, and notice everyone else is also lined up against the same wall we have hit so many times now. It doesn’t have any give, this wall, but we are all hitting it together. For now, that needs to be enough.

The eyes have it

The Eyes, by Jack Sirichumsaeng on Flickr, licensed under Creative Commons

I went to see Dr. H (retina) for a checkup. You will recall he’s in the same office, although a different side of the office, as Dr. H (glaucoma). I take turns seeing them. The visits, unlike my scans, never sync up. Their computer systems aren’t on speaking terms. I don’t even know if Dr. H and Dr. H ever speak to each other. I prefer the staff of Dr. H (retina) to the staff of Dr. H (glaucoma), not only because I’ve known them longer but because they are, on balance, just nicer people. (OK, there was that one medical assistant who once whacked me in the head hard with a piece of machinery she was adjusting. But I have not seen her in the office in a very long time.)

The good news is that Dr. H (retina) feels my left eye is doing better and since the intraocular pressure seems to have gone up, I can reduce the pink drops from two times a day to once a day, but now he also wants me to use the blue pressure-reducing drops that I use for my right eye in my left eye. To try to bring down the pressure with one drop which is being caused by the other drop, thereby making my left eye into a chemical battleground.

All of this is pretty taxing on my brain and on the app I use to keep track of which of the four drops I need to instill in my eyes go where, and when. Perhaps I should just dispense with the drug names? That would leave me with the following schedule:

Morning: Right eye: blue, hold for 90 seconds, wait for 3:30, purple, hold for 90 seconds. Left eye: pink. Wipe out residue, then blue, hold for 90 seconds.

Evening: Right eye: white (fridge), walk upstairs holding for 90 seconds, wait for 3:30, blue, hold for 90 seconds, wait for 3:30, purple, hold for 90 seconds. Left eye: blue, hold for 90 seconds.

Is this any easier? I forgot to mention that for the glaucoma drops, you have to sort of press them into your eye for 90 seconds. Then wait before administering the next drop. Which means this entire regimen takes ages. And that’s if I don’t lose track of where I was in the process.

Dr. H (retina) also chose to inform me on the progress of my cataracts, which have developed from an overuse of steroid eye drops. They are definitely there. No need for surgery yet, just that sinking feeling of cascading medical conditions and the inevitable interventions to deal with them which will in turn cause their own problems.

Next week I see Dr. C (rheumatologist) and a couple weeks later, Dr. C (gastroenterologist). In between, I’ll see Dr. L for a video checkup, but before I do, I will head to the hospital in person for my first ctDNA blood test, a very new means for looking for evidence of disease. I’m excited and nervous to get the results, which — who knows? — might show no disease in my bloodstream. Wouldn’t that be something?

All of this thinking about life, death, and my eyes has, naturally, brought to mind a poem inspired by a headless torso. It’s just the right time of year to read it (I think), so here you go:

Archaic Torso of Apollo
Rainer Maria Rilke, translated by Stephen Mitchell

We cannot know his legendary head
with eyes like ripening fruit. And yet his torso
is still suffused with brilliance from inside,
like a lamp, in which his gaze, now turned to low,

gleams in all its power. Otherwise
the curved breast could not dazzle you so, nor could
a smile run through the placid hips and thighs
to that dark center where procreation flared.

Otherwise this stone would seem defaced
beneath the translucent cascade of the shoulders
and would not glisten like a wild beast’s fur:

would not, from all the borders of itself,
burst like a star: for here there is no place
that does not see you. You must change your life.

2021

obstacle, by spinster cardigan on Flickr, licensed under Creative Commons

We turned a page last night. It made the same exact whisper other pages turning in the past did. Time, currently, is a solid block of ice we’ve all been frozen into, and there is no point pretending any different.

Can you tell I’m in a fantastic mood today? The world wants to put the calendar behind it, but I awoke (later than usual, but I went to bed much later, too) to a little flurry of notifications from my medical portal. There was the matter of some test results that came in, as it happens, just this morning. So much for labs taking time off for the new year.

Don’t get me wrong, I don’t have cancer again. Definitely not cancer. But what I am dealing with has made life uncomfortable for some months now, and notwithstanding previous oversharing in this space, I find I’m simply not ready to discuss the details of my predicament. I imagine those among you who want to have already figured it out.

Two new specialists will now be entering my life, both named Dr. C.: one a gastroenterologist, and the other a rheumatologist. They are both members of the same team, and that team has come together to examine the long-term adverse effects of cancer immunotherapy, of which I find myself, suddenly and unwantedly, possibly Exhibit A.

Yesterday, though, I had my latest scans, which found nothing amiss in terms of cancer. My CT scan was unchanged since October, and my MRI, which had previously shown one tiny area of possible concern, was absolutely without problems this time around. (This almost made up for the extremely uncomfortable time I had during the scan, which, rather than being the meditative and relaxing 40 minute experience that it usually is, was freezing cold and aggravating.) Dr. P., who looks at my brain scans, mentioned during our video call that she’d really like the frequency of my scans to decrease.

The contrast dyes used in scans aren’t the healthiest things to have coursing through your veins on a quarterly basis, so hearing that I might get to have scans less frequently was a delightful bit of momentary fantasy. Dr. L. would ultimately need to approve less frequent scans, and I am just not sure that melanoma survivorship protocols are quite there. Simply put, as of right now they just don’t know how long I might be able to go between scans, perhaps because not so many people with the same treatment history as me have gotten as far as I have without a recurrence of disease. Every day I wake up healthy, I add to the data about melanoma survivors.

This morning it became clear to me, as I looked at my lab numbers, and saw one result that exceeded a normal value by ninefold, that I’m in fairly serious trouble. Not serious enough to interrupt the holiday weekend, I suppose, because there have been no calls from Dr. C.’s office. But grave enough that a condition I have been dealing with (irresponsibly, I must confess) since August, and which worsened over the past month, is most definitely no longer something I can ignore.

There Will Be Tests. There will be more medication and more copays and more doctors visits, both virtual and in-person. There will be vague mention of my condition and you filling in the blanks mentally. I’m praying that the medication doesn’t include steroids, because my poor system has had enough of those for a lifetime (although resuming steroids might liven this blog up temporarily, again, so there’s that).

I’ve spent the day in a funk since waking to that news, doing ill-advised medical research before I have a complete picture of what is wrong and listening to music that is my go-to when I feel bad, not because it makes me feel better, but because it lets me be in my feelings.

But as I started writing this, it occurred to me that this isn’t the first time my fortunes have changed radically, literally overnight. That happened to me in April 2015, when I heard there was no evidence of disease in my lungs and then awoke the next day to discover a dozen tumors in my brain.

It is important to differentiate — this is not that. This, instead, is the slow realization that my cancer treatment of six years ago may have turned out to be a Faustian bargain, and that I’ve been careening down the road towards chronic illness ever since, without realizing it. I took the success of my treatment, and I did not think of its potential consequences, because who does such a thing in the face of a miracle drug? What if it is never possible to figure out if this condition was caused by my treatment, or whether I would have developed it anyway? New questions keep bubbling up in my brain, crowding out the old ones, which were more along the more pedestrian lines of, “How long do I have?” and, “Will I ever get to meet my grandkids?” (When you’ve survived cancer three times, yes, these questions eventually seem pedestrian, boring, even cliché.)

Thanks for listening. Thanks for still reading along. Apologies to myself for not acknowledging some important milestones here, which I used to try to do with regularity: five years with no active disease. Turning 49. Young J turning 14. It turns out these things can happen anyways, even when unremarked upon.

Instead of punishing myself for not marking these moments in writing, I will just be quietly grateful they happened. And then resume being pissed off at my current predicament, but as always, and in spite of myself, hoping that all the unknowns ahead turn out to be less daunting than they currently seem. I hope any of what I’ve said can be useful to you this year, but no pressure. Have as good a year as you can. I hope you can get a vaccine as soon as possible, and that you finally get to hug the people you’ve been missing, if they haven’t already been taken from you. Personally, I will keep holding on, with gritted teeth and white-knuckled grip, for that.

An attitude

her point of view, by Martin Fisch on Flickr, licensed under Creative Commons

I visited Dr H., the glaucoma specialist, today. My eye which formerly had high pressure is doing great with the three different drops I have to use, and hasn’t turned “beet red,” which is what happens to some people. But neither is my need for drops going away. It seems I have well and truly developed glaucoma from the extended use of prednisone eye drops to control the iritis my cancer drugs gave me. My other eye, into which I’ve been instilling prednisone drops for a few months due to more inflammation there, now has high pressure. There is no getting out of this loop, it seems.

I said to the doctor with some bitterness that I’d try to cultivate “an attitude of gratitude” (some might say I’m 50% of the way there). He agreed, without sarcasm. I didn’t ask to develop glaucoma, just like I didn’t ask to have cancer. Now I don’t have cancer, but I will apparently have glaucoma for, like, ever. It is cancer’s little calling card.

I came home and had lunch with Young A and J. Young A listened and chewed thoughtfully while I complained. Then he said, “It’s probably not true that you will have to use eye drops forever. Science might find new ways to deal with this.” It was such a thoughtful and reasonable thing to hear from the mouth of a ten year old. He’s right. Just as I’ve been a pioneer in a new type of cancer treatment, and somehow excelled in my response to it, so might I also have the chance to benefit from new ways of treating this eye condition. It wasn’t that hard of an adjustment to make to my mindset, and I’m grateful my kid helped me get there.

Besides, glaucoma is so much more relatable than what I’ve been through so far. I’ve already been in touch with one friend who has it. It is a condition people have heard of, and the treatment thereof doesn’t require nearly as much explanation as my cancer treatment did.

But it does appear that I’ll need to keep my prescription drug haggling skills finely honed. Forever (or as long as that lasts). I guess that speaks to the small part of me (possibly forged in the time I spent living in Italy) that needs a little bit of daily struggle in order to feel 100% alive, the part of me that needs to triumph against adversity in even the smallest way.

Thanksgiving is coming. Our turkey has been secured, we are planning Zooms with family, and when I think back to the bad old days of fasting three hours twice a day in order to take my cancer meds, having to put in some eye drops a couple times a day really is something to be grateful for. That, and I’m picking up my new glasses next week.

Four eyes.

Another milestone

Five in a row, by Thomas Cizauskas on Flickr, licensed under Creative Commons

Five years ago today was my last ride in the gamma knife machine. Since that last surgery. It was one that I like to call a “touch-up,” because unlike my first gamma knife surgery, which was to treat nine lesions in my brain, the second one was in response to a single spot of concern on my MRI.

I remember how tormented my neurosurgeon, Dr. K, seemed at the time. An MRI can only tell you there is bleeding, without giving a sense of what might be behind the bleeding. Metastatic melanoma tumors bleed a lot. They bleed when they form, but they also bleed when they are dying out. Dr. K consulted with many colleagues about my case, and all of them recommended that he cut. Gamma knife being his specialty, however, he wanted to give it another try.

“Another try” has given me, so far, five years. At the time of my last gamma knife surgery, Young J was eight and Young A was five. Dr. K could have been wrong, and I might have missed out on all that has happened in their lives since then: all the major milestones in their lives, but all the minutiae too, like buying them new socks. Like their obsession with sushi (we are making it for dinner tonight. Again.). Like hearing their voices imperceptibly, gradually, lowering to the timbre of adulthood.

I know. I have lucked out so far. I know it could be Otherwise. I try not to dwell too much on these milestones because there are so many of them, and they threaten to overwhelm the emotional buffers. But right now, before I set up the table for our sushi-making and before our evening goes the way evenings go in 2020, I’ll see whether I can write a quick note to Nurse Practitioner A., who works with Dr. K (or at least did in 2015), to make sure they know that thanks to the call he made five years ago, I am still here.

It bends

arc, by electricnude on Flickr, licensed under Creative Commons

I started composing this post a couple weeks ago. This is starting to become a theme here, I think. I started writing but felt that my tale lacked a narrative arc. It lacked closure. I am not sure I have it quite yet, but I’ll know by the end of writing this. I don’t know where this piece will go, because I’m writing it a couple of weeks removed from the inciting event, and in the grip of rage over the [latest] travesty that took place on Capitol Hill tonight.

Sometimes it isn’t until I’m right in the middle of a reenactment of something unpleasant that I realize what’s going on. Since my eye condition (itself an unpleasant thing that I’ve cycled through many times since 2015) persists, so does the continued need for multiple prescription eye drops — or as I think of them, the gold leaf-encrusted artisanal doughnut of the prescription drug universe.

Almost five years ago, I was in a pricing bind with some eye drops, the resolution of which was epic and which I recounted in granular detail here, because I was on dexamethasone at the time.

A couple Fridays ago, after I’d already been to see the newer Dr H (glaucoma specialist, not to be confused with Dr H retina specialist, same office), I came home and realized that the drop in the green bottle with the purple cap, which had been running low for days, was basically empty.

The doctor prescribes these, and then you are basically on your own figuring out how to pay for these. What would you pay for the one on the upper left?

So I call in a refill to the pharmacy near my house, checking the price I paid for the 5 mL bottle last time: $40. I get a text in response:

Xxxxxx Xxxxxx Rx: You have 1 prescription(s) ready for pickup. Estimated cost is $140.00

I pick up the phone immediately to call them. The pharmacist checks my insurance and says, “Yep, that’s the price.” I protest that I’d paid a hundred dollars less the last time. She can do nothing further for me.

Remember, it’s Friday afternoon, it’s getting later, and offices will start to close soon. I should be getting dinner ready but instead I’m caught in a loop of music on hold with my company. I notice the music on hold has changed in the past five years, from a single jazz riff endlessly repeating, to classical piano. At one point I am even hearing the Mozart sonata Young A is currently working on. Except the sound is distorted and unlistenable, almost like a dental drill to the ears.

After a lifetime, a well-meaning guy comes on the phone, and after putting me on additional endless hold, he comes back and tells me that yes, my copay is $140 for this tiny bottle… and that that is the price I paid last time.

I want to scream. I have J look up our credit card statement from July so I can prove to myself I’m not crazy. I paid $40 for the drops in July, and my insurance swears I paid $140. There is no talking them out of this crazy notion.

In the meantime, it is past 5 p.m. and the message I leave on the voicemail at Dr H (glaucoma specialist)’s office, asking with despair in my voice if I really need to stay on these drops, will now go unanswered until Monday.

I sob at the dinner table that night, and drink a lot of wine. I feel very sure that my life is worthless to the forces that drive healthcare, and I can’t even count on my insurance company to agree on a simple fact.

Over the weekend, I learn that when you have a tiny bottle of eye drops that cost a fortune, and that bottle seems to be empty, you can manipulate it in a particular way to extract its final precious drops. I use the drops six more times between Friday night and Monday morning, each time producing enough from the bottle to make a decent sized dose.

Monday morning I call the specialty pharmacy that recently helped me get the other super expensive eye drops which have no generic equivalent — they had sold those to me the week before for $50, and I was glad to have them. They run my insurance and add a coupon from the manufacturer and after I am on a short hold, they come back to inform me that they can sell these drops to me for $15. I am in disbelief and say, “One five?!”

The only thing is: I’d been over to that pharmacy the week before to pick up the other drops. They’re a tiny office in an office building in an office park wasteland. When I’d been to the office to pick up my drops, I noticed none of the women who worked there wore masks (all the men did). I wasn’t happy about this but decided to hold my tongue and get out as quickly as possible.

This time, I’d have to go back knowing their mask protocols were not strong, and knowing that the woman who went to bat for me on the phone and got me the right drug price was one of the maskless people.

I got a call back from Dr H’s office, and they informed me that the drop I’d been trying to get this time around came in a cheaper generic version, and they could prescribe that instead. I opted to pick up the drug that was the same I’d been using, at the suddenly bargain price of $15 (and possible covid exposure).

I felt triumphant for a moment, as one does when one prevails against a soulless system. But that triumph doesn’t last. There is always something to drag you back to the reality, which is that we shouldn’t have to be fighting these companies in the first place. I remember having eye problems in Italy and walking into the one pharmacy in town open on a Sunday and buying a bottle of eye drops over the counter for about eight bucks: no prescription, no outrageous copay.

In Brooklyn, my trusted ophthalmologist, Dr D, always turned his cluttered office upside down looking for samples when I needed eye drops. He didn’t always have them, but he’d always check. I miss Dr D and his ad hoc solutions to my eye problems, problems which are rare enough that they seem a bit ad hoc, too.

The care my eyes receive now is highly specialized and eminently qualified, but sterile (sterility being not entirely undesirable these days, but from a medical perspective, not an emotional one). I have simple needs: I have had the same pair of glasses since 2012 which I would like to update; and I can barely see the computer to work anymore, because I likely need reading glasses or progressive lenses.

Here we are. I think this was my destination all along: a veneer of sterile professionalism applied to a soulless enterprise where lies are passed off as truth. This passes for Healthcare. Switch contexts, and this passes for Government, for Justice. There was a crime against Democracy committed in the Senate tonight, the remedy is uncertain at best (with just over a week to go), and there will be no lower-priced generic. I sure hope the people who save us keep wearing their masks.