Where’s the orchestra?

The Orange File” is an irregular series of blog posts through which I am chronicling some of my experiences dealing with a potentially serious kidney issue.

Something odd and unexpected happened shortly after the initial discovery of a large mass on my kidney: I lost almost all interest in (and enthusiasm for) music. This was just one of several abrupt and cruel dimensions of the anxiety and depression that came with receiving life-altering – and possibly life-threatening – news. Music has always been very important to me from a very young age, when my taste in music was based largely on the contents of my parents’ record collection (which included ABBA’s Greatest Hits Vol. 1 & 2, Georgy Girl by The Seekers, and Barry Manilow Live). The first LPs I ever owned were Kenny Rogers Greatest Hits (1978) and K-Tel’s Power Play (1980) and I’d play them on the same Raggedy Ann and Andy record player that I used to listen to my book and record collection.

Like so many people, music was a soundtrack to my life – In fact, I actually made a series of mix CDs years ago, weaving together the songs and audio clips from my formative years in a collection called “Life in Music.” From amassing a huge collection of records, CDs, videos, and memorabilia to trying my own hand at creating music with a collection of guitars, and even starting a music-themed podcast, Rush Strutter Zep Magik, with some friends, music had been an important passion and past time until everything changed.

I’m okay now. But clear cell Renal Cell Carcinoma (ccRCC) affects tens of thousands of people every year and there is a chance that it could come back for me somewhere down the road, which is why I will be getting regular scans for the rest of my life. A new reality such as this brings everything into question; the less important things melt away quickly and even things we love and cherish suddenly seem frivolous.

So that’s just what happened. All of the sudden, I didn’t want to hear anything that distracted me or reminded me of better times. I didn’t want to hear anything that could make me happy or make me think of anything outside of what I was feeling. Moreover, I felt stupid – that’s really the word I want to use here – for loving and collecting darn near anything, not just music-related stuff, but toys, comics, and books. I felt like I had wasted my life having fun and being happy instead of preparing for something bad to happen. And because of this, I stopped almost everything.

I especially stopped intentionally listening to music. One of the first things I did was to cancel SiriusXM. This actually wasn’t a terrible move because I was tired of it anyway and I’d typically spend most of my commute flipping back and forth between news stations and obsessing over things that I had no control over. Incidentally, if you have SiriusXM and you ever decide to cancel it, make sure you have about 45 minutes and a Bunyanesque amount of patience because it is something of an ordeal.

To replace news and music in my drive time, I started listening to DVDs of old TV shows and cartoons on my DVD player. Gilligan’s Island was the most-played show in my rotation, and I cycled through all three seasons many times over the course of weeks and months. At some point, I became acutely aware that this was exacerbating my feeling that I was stuck in a purgatory of sorts, much like the seven castaways themselves.

I also started looking at my collections and deciding what I could sell and some of that was because I felt like I was saddling my family with a lot of possessions that they wouldn’t want, and to generate some additional money in case I wasn’t around. I thought of this process as a kind of “reverse nesting.” First on the block was my Samhain box set, which I hadn’t listened to for quite some time. I was also developing a little bit of sensitivity to anything garish or ghoulish, so I was ready to let it go. It was in near-perfect shape, and I knew it would fetch some green on eBay, so I penned an over-the-top product description:

If you’re reading this, you’ve probably been looking for one of these for a long time. And now, here it is. This is an apparently rare Samhain box set from my personal collection. I have watched the VHS a couple of times over the years and listened to the CDs. Let’s call it gently used. The comic book has been tucked behind the liner so my kids wouldn’t find it. I guess it’s a holy grail of sorts for Samhain/Danzig collectors. Just don’t listen to this within the vicinity of Danny Marianino from North Side Kings, because if he catches on, you might be in for some trouble. Payment via PayPal. Shipping will be in a large, flat-rate box from USPS. Enjoy this.

The Samhain set sold very quickly and I got quite a bit more for it than I originally paid. From there, I moved on to my Misfits box set, which was also in terrific shape. They were a favorite in the high school and college years. But Glenn Danzig has revealed himself time and again to be a pompous jerk and I still have plenty of freestanding CDs and 7” records by The Misfits, so I decided I could live without the box set. So, I put that one up, too:

Misfits Coffin Box Set COMPLETE with booklet and pins PLUS three Danzig CDs! You’re preparing to pull the proverbial trigger on the infamous Misfits Box Set with coffin box, booklet, and pin! This is my personal, much loved and gently used edition. I haven’t listened to it in years and while I think the disks are in very good condition, I can’t guarantee that they’re flawless. Nevertheless, this is a deal you won’t find just anywhere. Your parents will be impressed when you pop these disks in the Astrovan CD carousel and you show them that you know all the lyrics to “Rat Fink,” word for word! Organize a four-person a capella performance of “Bullet” at your school. It’s sure to be a crowd-pleaser – especially that last verse (you know which part I’m talking about). Added into this monumental offer are the first three Danzig solo albums so that you can beef up your index of Jim Morrison and Elvis callbacks from Glenn’s early catalog. Buy these before that guy from North Side Kings beats you to the punch! Whether you’re 18 or 85, you’ll be the coolest kid at the Headbanger’s Ball!

Which one of them is wearing the
“I’m With Stupid” t-shirt?

Once again, that listing yielded a tidy sum. From there, I turned my attention to my Megadeth collection, again mostly because Dave Mustaine has progressively become more intolerable over the course of the past decade or so. I worked that into my eBay listing, as well. The auction lot was actually really big, so I am only sharing the salient parts of my ridiculous listing here:

What we’ve got here is a Megadeth collection of extraordinary magnitude!

Remember when Dave Mustaine gave humorously conceited interviews about how he was better than everyone else, as opposed to the more recent era of his hard-right conspiracy-fueled rants? Remember how Vic Rattlehead used to symbolize everything bad about the military-industrial complex, but now since everything in the world is apparently terrible and sinister, Vic is kind of just like a heavy-metal version of an insurance company mascot? Remember when you double-dated for high school prom and you had to wait in line for dinner because there was a medical emergency in the dining room and while you were passing the time waiting for your table, the other couple talked about how great the video was for “In My Darkest Hour”? Relive all that stuff and make new, scintillating memories with this ultimate Megadeth collection!

These items are from my personal collection. They are most assuredly NOT in mint condition, as they have been played, displayed, read, and well-loved. The Killing Is My Business LP is maybe the crown jewel of this lot, and it has the kind of scuffs and wear that one should expect in a secondhand collection. I think there may have been a price tag on it at some point. Also included here is the Chaos! Cryptic Writings of Megadeth, Necro Premium Edition (She needs premium, dude!). I haven’t listened to many of these albums in some time, and while I am relatively confident that they’re mostly in good shape, I can’t guarantee that everything here plays perfectly. It’ll sure look cool in your collection, man-cave, she-shed, ski lodge, bomb shelter, panic room, or wherever the hell you keep your collectibles. Those two items alone make this lot of stuff a very rare find, indeed. At any rate, just like The Dramatics sang in 1972, “whatcha see is whatcha get.”

It sold easily. I was starting to get on a roll with these auctions and Thomai was starting to get worried that I was going to start parting with some things that I really loved. In fact, I had written a listing for my Hoyer Arrow Flying V guitar as well as a listing for my entire comics collection, which has been painstakingly built and curated for over four decades. But neither of those listings have seen the light of day thus far.

This was an odd time, for sure. Where I typically filled almost every extra minute of my days and evenings with hand-picked selections of music, concert videos, and the like, I spent most of the time staring off into space while sitting in silence or playing old TV reruns in the background.

On April 26, I receive a much-awaited call from my urologist-oncologist in which he went through my pathology and prognosis. It was, as I have noted before, all very encouraging and seems to signal better times are here. I had missed music a lot during this time and I knew that shutting myself off from people and things that I loved had not been helpful. After I took some time to let everything sink in, I decided it was time to revisit some music that I loved and add some new tracks to the soundtrack of my life.

L.A. Woman by The Doors, which features the song “Hyacinth House.”

The first song that I listened to that night was “Hyacinth House” by The Doors. I had been thinking about The Doors for weeks and one night as I was trying to go to sleep, I found myself wondering what it might sound like if Jim Morrison had covered “If It Makes You Happy” by Cheryl Crow (Maybe A.I. will provide us with that experience someday). It was an emotional moment to hear the song once more, but not because I had a special attachment to it; I had simply denied myself the experience of loving music with no information as to whether I might ever get that feeling back. But it did come back. From there, I pulled up the songs “Exceptional” and “Unisonic” by German power metal supergroup Unisonic and I cried through both of those. I finished with Kai Hansen’s Helloween medley from the 2018 Wacken Festival, which is legitimately one of my favorite musical performances ever. It is hard to put into words how good it felt to hear particular riffs, bars, and even individual notes as I returned from my self-imposed isolation. And again, I wept. If you know any of these songs (or if you don’t and you decide to check them out), it might not make sense that they’d move anyone to tears, but that’s exactly what they did for me. At this point, I haven’t mustered the emotional strength to pull out sentimental favorites like Lou Reed’s New York (one of my all-time favorites) or Mutineer by Warren Zevon, or even Puccini’s La bohème, but I know it will be a powerful experience the first time I revisit any of them.

It’s been about six weeks and I’m still listening to old cartoons like Dennis the Menace and Heathcliff during my commute and when I am working at the computer. While I haven’t exactly settled back into the routines and habits that I once had, I’m still getting back into music with a new perspective. I recently pulled out Fabulous Disaster by Exodus, which was a huge deal to me back in 1989, and spent a day last week appreciating the memories that it brought back. I also revisited the offbeat Helloween albums Pink Bubbles Go Ape and Chameleon and appreciated the often underappreciated gens from those records. The podcasting itch has returned and one of these days, Rush Strutter Zep Magik will re-convene for a long-planned review of Let It Be by The Replacements. And later this week, I’ll be attending a live performance of The Lacey Jane Band in Centerville, which features two of my middle school teachers, both of whom were very important in my early appreciation for music. It’ll be a nice way to keep things moving in the right direction and, like Barry Manilow might say, I’m tryin’ to get the feeling again.


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Back to the present

I suppose the best way to start this piece is by typing the words “I am okay.”

Clear cell Renal Cell Carcinoma (ccRCC)

In early April, I learned via MyChart that the mass that was removed from my right kidney was clear cell Renal Cell Carcinoma (ccRCC). It took about two more weeks for my doctor to contact me (due to a minor clerical error), and two days before my 50th birthday, I received the welcome news that my prognosis is very good. In fact, it is so good that no further treatment is recommended at this time. I just need to get scans every six months for a few years and then every so often for the rest of my life. It’s a best-case scenario at this point. The cancer was not found anywhere else in my body, including my vena cava, surrounding tissue, and my bones from head to toe. The doc did tell me there is a chance it may come back, and that’s why they will check for it regularly, with the plan being to intervene as quickly as possible if it is found again.

Right here, I should say that my original intent was to try and chronicle my experiences from start to finish after the mass was first discovered. I have been writing for most of my life for one reason or another, sometimes as a paid gig and other times for my own recreation and enjoyment. But things quickly became overwhelming and instead of being therapeutic, writing about what I was experiencing was overwhelming and something that I just couldn’t bear. I needed to get to better times before I could appropriately thoughtfully express myself. Those times are here now.

The Da Vinci surgery system.

So, I am very grateful for so much – from the family and friends who supported me through the worst of my anxiety and uncertainty to the Da Vinci robot system that the urologist-oncologist used to extract the mass and my kidney. I am perhaps most thankful to my primary doctor, who took my concerns seriously. In fact, I went in to see him in early March thinking that I had a hernia, thinking I had reopened a previous incision from the gallbladder surgery I had 20 years ago. But I was also having back pain and side pain and, while he conceded that a hernia was possible, he was alarmed at the level and extent of the pain I was experiencing. So I guess I am especially grateful that he took my pain seriously and didn’t just wave it off. Within a few days, I had my first CT scan and following the revelations from that, things moved even more quickly. In less than three weeks’ time, I found myself in a hospital bed recovering from a radical right nephrectomy. I’m fortunate at how quickly things worked out for me, as I know it doesn’t work nearly as well for many people, even in the United States. Maybe especially in the United States.

The four stages of kidney cancer

It’s hard not to ruminate a little on some missed opportunities over the last four to five years, though. I started seeing a hematologist around five years before all this started because my blood platelets were abnormally high. As my platelets climbed from year to year, I expressed more than once that I was concerned because I had read this was a possible indication of cancer. Every time I brought this up, she just waved me off and said that I was young and in relatively good health and she’d tell me how her father had high platelets. The plan was to put me on meds once my platelets hit 750k, but when I hit that level, she decided to wait. On the day of my surgery, my platelets hit 1 million, A week after, they dropped to 900k and a few weeks later, they were at 864k. Just about everyone thinks there’s a correlation – except for my hematologist, who still maintains that my high platelets are due to a genetic mutation (CALR). The last time I saw her, she seemed genuinely surprised – stunned really – that I apparently had cancer the whole time I have been seeing her. She is a medical oncologist.

I also recall that in the early days of the pandemic, I received some test results in the mail that indicated my kidney function was problematic. I remember driving to an early morning doctor’s appointment at my former primary doctor’s office and listening to news reports on the radio about how everything was closing down. It sounded like the end of the world. Once I was there, I talked with a doc who was standing in for my regular physician. He reviewed the results with me and again, he basically weighed them off. His explanation was that the results were from an early morning fasting test and that I was probably dehydrated. He might have been right, it’s still apparent in hindsight that there was definitely something wrong with one of my kidneys. It seems like another missed opportunity, all told.

One of my biggest lessons from all this is that I need to be a better advocate for myself. Had I pushed a little harder here or there, it’s entirely possible that the cancer would have been found earlier and maybe I wouldn’t have lost an entire kidney. Maybe I could have kept almost all of the right kidney if things had gone differently in the very beginning. Maybe I could have avoided all of the terror and anxiety I went through when a softball-sized mass had overrun an entire organ. But the biggest lesson by far has been to be grateful for what I have at this point in my life. Most importantly: I am alive, and, once more,  I am okay.

The Orange File” is an irregular series of blog posts through which I will chronicle some of my experiences dealing with a potentially serious kidney issue.


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Kohl’s is hell.

The Orange File” is an irregular series of blog posts through which I will chronicle some of my experiences dealing with a potentially serious kidney issue.

The doctors moved quickly to schedule my right radical nephrectomy, scheduling the procedure somewhere around two weeks after the initial discovery of my mass. I was, of course, grateful for the sense of urgency, but rattled by it, as well. Once again, the pacing of everything drove it home to me that this was serious business, indeed. Moreover, despite some indications that things were relatively contained and treatable, I repeatedly found myself conjuring up the worst possible, and often the least plausible, of outcomes.

A couple of points before I go much further with this anecdote: First of all, I find it hard to believe most people who boast that they’re not afraid of dying. Sure, there are people who are ready to go by the end, there are definitely people who want out, and there are unique sorts of people who can face danger and uncertainty with admirable decorum. But the folks who put the “NO FEAR” stickers on their trucks, pose dramatically with their gun collections amidst banners that say “ΜΟΛΩΝ ΛΑΒΕ” or “WE DON’T CALL 911,” and heck, even Stone Cold Steve Austin’s “F💀CK FEAR, DRINK BEER” motto – I just don’t buy that most of these folks wouldn’t be a little rocked by sudden news of a potentially life-threatening condition. Then again, I don’t feel like there’s anything wrong with me being upset about my own situation, either.

For my part, my fear in these earliest days of this whole misadventure was more centered upon what would happen to my family without me; how would they get by and who would they turn to if I’m not around anymore? Of course, if given the opportunity to run the full circuit of an anxiety attack, my brain would eventually get back to the question of what will happen to me when the spark of life eventually fades, as well as whether or not I have lived a good enough life to merit a good enough afterlife, provided that’s how it works. But the way this situation has moved my internal locus of control a bit to the outside is somewhat embarrassing to me, and there have been a few times that I’ve found myself falling back into metaphysical explanations and consequences, particularly when I’m stressed or panicky.

“You have no legs, Kohl’s wolf,”

With all of those prefatory remarks in mind, I had a dandy of a freak out a few evenings prior to my nephrectomy, when I accompanied my wife (T) and our son (D) to Kohl’s to get my son some shoes. I wasn’t feeling too much like going out and about, but I also felt the pressing need to “put one foot in front of the others,” as so many people have suggested to me, so we went out together. I was intrigued by the sight of some menacing rubber wolves frolicking without legs among small fields of pinwheels near both store entrances, a tactic that seemed to be aimed at keeping Canadian geese (and more importantly, their goose poop) away from the front of the store. It was an odd sight, and I stopped to take pictures for posterity.

I think we still went in the store together, but I said I wanted to look through the men’s department and I would catch up. I’m not sure why I did that, though, as I had no intention of buying anything, especially with major surgery being a few days away. Just a few moments away from my family seemed to bring on a nagging feeling, not quite like a panic attack but more like a “something is wrong here” sensation. And although I tried to look at racks and tables of clothing, I was more drawn to scrutinizing the atmosphere around me. I can’t say that the music was necessarily ambient, but it was definitely unremarkable. There was hardly anyone else in the store, as it was evening (maybe a Sunday evening, if I recall correctly). But most importantly, the walls were all white and seemed almost blank. At first, I thought to myself that they were redoing their advertising artwork like most of these places do over and over throughout the year. But it was still unnerving at just how plain and bare everything seemed.

Then, somewhat randomly, it popped into my brain: “This is what hell might be like.”

The electric Kohl’s-aid acid test.

I can’t say for sure where this came from, although it’s worth noting that I made a close read of Dante’s Inferno just last year, which famously emphasizes the notion of a personalized, individualized hell for the deserving sort. So I guess this is indicative of what I apparently think I deserve, or what otherwise would be an awful, terrible fate to endure in the hereafter, because, for the next 15 to 20 minutes, I obsessed over the image of me wandering around a white limbo, not being able to see, embrace, or talk to my loved ones and only occasionally encountering grainy visitors with no meaningful interactions to be had. Dante had medieval Italy, but as for me, I felt destined to spend eternity at the Kohl’s in Centerville, Ohio. Up to that point, I had probably imagined that hell was more like the musical number in the 1971 film Roseland.

In that moment, I was mainly concerned that I would pass away on the operating table, although the idea of an eventual passing under different but related circumstances was still on the table. I made my way to T and D in the shoe department, and I was so wrapped up in the scenario in my head that I couldn’t participate in any of the typically scintillating conversations one might enjoy in the kids’ show department – “Don’t touch those,” “Put a sock on that, “Is this your big toe?’ and so forth. I had some awareness of what I was doing, too; I kept spacing out, my eyes teared up and I’d have to be jolted back into conversations by sheer brute force. It was more of a dissociative feeling than one of panic, although the underlying anxiety was palpable. It was especially helpful that T ultimately intervened, as she got very close to me, looked me in the eyes, and mouthed the words “You have to stop this.” She knew what she was doing, too; she didn’t want D to notice any further that I wasn’t “there” at the moment and she also knew I needed tough love to snap out of my infinity loop.

If you’ve seen the musical number from Roseland, you know what I’m talking about.

“Thought-stopping” is a longstanding strategy to cease or at lead reduce obsessive thinking. Some people wear rubber bands around their wrists and snap them when they become aware of obsessive or intrusive thoughts. Sometimes it’s effective to simply change one’s surroundings, whether that’s going from indoors to outdoors, or even just changing how one is situated within a smaller space (moving from a chair to a sofa, from the bed to the floor, etc.)  In this instance, it was focused and meaningful eye-to-eye contact with a powerful, multifaceted message: stop hurting yourself and don’t upset the little one. T didn’t know what exactly I was thinking, but she knew it wasn’t good, and she acted quickly to stop it. It doesn’t work every time and in every situation, but it is sometimes helpful to get the train of thought back on its track.

I didn’t completely snap out of it in one fell swoop, but this interaction set me on the road out of hell – or maybe just out of Kohl’s, because I’m still not really sure where I was for a little while that night.

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Exposition: And still my world keeps turning.

“The Orange File” is an irregular series of blog posts through which I will chronicle some of my experiences dealing with a potentially serious kidney issue.

There is a 10.9 cm heterogeneous mass within the right kidney as described above, highly suspicious for primary renal malignancy.

The above information came to me via MyChart at around 4:51 PM on March 17, less than half a day after getting an MRI. The MRI came after a CT scan earlier in the week indicated a mass on my kidney. Working backward a bit further, this all started when I was sent for a CT scan after I went to my doctor complaining of a possible hernia. It all unfolded in, say, about 10 days, from the point of my physical exam with my family doctor to the MRI and subsequent results. So, by most standards, things moved quickly in the grand scheme of things, but seemed to progress agonizingly slowly from day to day. More on that another time.

Even though I already knew there was a formidable mass on my kidney going into the MRI ­– I had received the CT results on that Tuesday morning, reading them on MyChart around 6:30 AM – the experience of getting the MRI results back was exceptionally jarring. In the first place, it confirmed that something scary was going on inside my body, and the findings used the word “malignancy,” which further built upon my looming fear of a worst-case scenario. Additionally, I received the information well after the close of business for pretty much every doctor’s office involved up to date, and none of these places would open until Monday morning.

So there I was, reading, re-reading, Googling, crying, freaking out, and trying to snap myself out of what felt like an awful, awful dream. Much to my surprise, life kept moving along at the same time. My wife and I had plans for the weekend, her birthday was coming up, we had stuff going on with our kids (two adults and a little one), bills to pay, and another work week just around the corner when everything started all over again. Oh, and there’s still a pandemic going on; that actually factored into the situation, as well. All told it was kind of like living through that episode of Growing Pains where Mike Seaver stays home from school and realizes that everyone goes about their business even while his daily routine has changed significantly. The only difference was that there wasn’t a laugh track at my house.


A young Mike Seaver experiences pain and yearning.

In the midst of all this, I remembered a snarky comment that someone fired my way during a Twitter debate years ago. As I recall, I’d stated some kind of plain fact (like a pro wrestler’s PWI ranking or something like that) and my unimpressed cyber foil simply replied, “And still my world keeps turning.” That wry retort was a reminder that by and large, the world is bigger than my opinions, my convictions, and my struggles, up to and including the current one, which was rapidly taking on the appearance of a life-and-death struggle for me. It was a humbling enough barb to catch in a stupid Internet argument, and it was even more sobering to reflect upon it in the context of what was going on in my very small world, – which was in fact situated within a great big world. Imagine a Venn diagram in which I am represented by a circle that is one eight-billionth of a giant circle.

What I did find out soon enough, is that plenty of people care, from individuals to groups, despite the inability of the world as a giant conglomeration of matter and forces (the nature of nature, if you will), lacks the capacity or ability to care. Finding support in the early days of this odyssey was enough to keep me from crawling out of my skin, at least for a little while. That’ll be a recurring theme in due course, though.

I don’t know how people live through this, but I suppose I need to find out.

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