Monday, October 26, 2015

Our Cancer Year

It's been a year since I first noticed the lump in my neck. I'd just started at the library and didn't have insurance, so I had to wait until November to get it checked out and here we are now. I'm having another surgery on Wednesday. This one will remove the lion's share of lymph nodes from my neck, and then maybe, after another radioactive iodine treatment, I'll feel confident enough to say I'm cancer free. It's been a long year.

But it could be way, way worse. I reconcile that every time I start feeling sorry for myself. But even "As far as cancers go, this is the one you'd want to get" cancer goes, it's still supremely anxiety inducing. It certainly didn't help when, after noting some radioactive iodine uptake in my chest, my endocrinologist told me that it looked like there was a mass in my chest but he wouldn't know for sure for THREE MONTHS and I spent the whole summer coming to terms with having my chest cracked open in the fall. When the three months were up, the doctor ordered a whole body scan with a diagnostic dosage of radioactive iodine to see if there was still uptake. The radioactive iodine uptakes in any remnant thyroid tissue left in the body that metastasized from the cancerous thyroid. Once the radioactive iodine has been ingested, they very slowly drag you through a machine that acts like a giant geiger counter. The end result is actually actually pretty neat looking: your neck (and in my case, lightly, my chest) filled with static. The diagnostic whole body scan showed nothing. Totally thrilling.

The PET scan my doctor ordered, on the other hand, showed some "overactive" lymph nodes in my neck. Five of them. I went to my beloved ENT Dr. Hill to see what he thought, or if he could remove them, and he referred me to a doctor at KU Med who specializes in aggressive lymph node removal. "I could do it," he said. "But you want someone who's in there pulling out tons of lymph nodes every day," he said, in so many words. Unlike my endocrinologist, Dr. Hill made me feel more at ease. I went to see the doc at KU Med and she recommended just getting rid of all of the lymph nodes possible. You can't get them all, but you can get most of them, and by removing the probably cancerous nodes, yanking out the rest reduces the risk of it recurring down the line (which happens about 30% of the time, recurrence). She stuck a camera up my nose to look at my vocal cords because you gotta surprise yourself every day and it was one of the Top 5 worst experiences of the whole cancer debacle, so I'm lucky there.

She also ordered a biopsy of some of the neck nodes because, since one of them is in my thyroid bed, it involves going back through the scar from my thyroidectomy and that whole area is a big scar tissued mess and going back in runs the risk of destroying my parathyroid glands (which regulate calcium in the body) or damaging my laryngal nerve (which regulates your voice and, considering how I basically yell all the time because I'm part deaf from so many punk rock shows in my younger years, might not be such a bad thing). I don't know if I whined about the biopsy I had on my cancer lump last December, but that was the #1 worst part of this whole affair in the Top 5 Worst Things About Thyroid Cancer. The list looks like this.

5.) Having my vocal cords assessed via having a thin camera shoved up my nostril. They had to restrain me. It was fucked up.

4.) The pain in my hand from the IV the day after my thyroidectomy. The surgery was actually a breeze (again, I can't recommend Dr. Hill enough. The man is a magician. I asked him how many thyroids he takes out a year and he said he takes out 3 a week. That was exactly what I needed to hear!) and the worst part was the liquid diet dinner they brought me after the procedure (I actually wrote a song about it, it was so bad). The saltiest chicken broth you've ever tasted and lemon ice and hot iced tea. Fortunately, the young man with the kidney stone in the bed next to me neglected to eat his dinner before he left and I had Jenny snag me his cheesecake and it was incredible. Totally mood boosting. I only stayed one night, but wasn't discharged until the next evening and by then the IV in my had started to hurt really bad. I don't know why that's what I think about when I think about that hospital stay, but it stuck with me. That and the nurses coming in every 2 hours to take my blood, which totally got me over my fear of needles. Cancer will get you over needle anxiety right quick.

3.) Radioactive Iodine Treatment Isolation - You think it's gonna be fun, you try to treat it like a vacation, and instead you're living in your childhood bedroom you haven't lived in for like ten years and it's full of dust and you get sick and can't tell if its severe allergies or the radiation working its way through and out of your body. You can't see your family and your dad says, "HEY MERI HE'S GLOWING!" every time you come up stairs to shower the radioactive sweat off of your body (Dad's comments were actually pretty funny). You watch sporting events you have no real interest (the NBA playoffs, the FA Cup semifinals) and, for some insane reason, hours of "Diners, Drive-Ins, and Dives" and you admit to yourself you're not even hate watching the show and you despair. There are nice moments, like your parents buying you tons of junk food and fast food to compensate for the 2 hellish weeks of low iodine diet that preceded the treatment, but you can't enjoy it because you just want to hug your baby but you know you can't. On the plus side, you have some serene moments sitting on the back patio alone in the early morning sipping coffee and listening to the new Tallest Man on Earth album. You watch John Wick at 2 in the morning and immediately consider watching it again it's so damn awesome and you have nothing better to do. You write a fistful of songs for a concept album about the whole cancer experience but you wait until your last day in isolation so you don't get as far as you would have liked. Plus there were Royals games on every night.

2.) Overall existential dread and death anxiety and the idea that my daughter will grow up without a father. The psychologist I see at KU Med referred to this as a Negative Feedback Loop. Yep. Sounds about right.

1.) That goddamn first biopsy. It lasted less than 10 minutes and was worse than the root canal I had that took 4 and a half hours spread over 3 days.

I will also include the second biopsy in there with the first one because all biopsies are horrible, some worse than others. Just ask the guy in the chaotic Interventional Radiology prep area there for a bone marrow biopsy. "You've had this done before, correct?" "Oh yeah," he said. That made me feel like a big fat princess baby since I was there whining about how my doctor said I could have conscious sedation and the nurse at IR was like, "Yeah we don't usually do that because this is such a minor procedure but you can have some Ativan. And we can have the sedation on tap in case you really need it during the procedure." The Ativan didn't do much, and by the time they went into the left side of my neck and started digging around I tapped out, and then I blacked out, and then I woke up feeling dreamy. Because I'm a big baby but hey, I paid the damn $50 copay so if I say take me to La La Land, you take me to La La Land.

I swear, I've said "I'm a big baby" to every doctor and nurse I've met at KU Med. It's a defense mechanism because even though I know I'm in incredibly capable hands, the prospect of having my neck cut open on both sides and at my throat and all the lymph nodes scooped out like pumpkin guts is scary. But hey, at least I'll get to watch the Royals play in the World Series from my hospital bed so that's something!


The thing with Thyroid Cancer is that I know it could be so much worse, and that still doesn't make it less shitty. I'm a neurotic anxiety-ridden worrier by nature and the cancer has only made those tendencies worse. It has also overtaken all creative aspects of my brain which is one of the sadder things because there's still stuff rattling in there, music and comics and the book I need to finish but I can't motivate myself to do anything but distract myself with TV or baseball or fantasy football or staring at my phone. It's a sad sort of self medication.

The best thing lately has just been doing random stuff with Rosie. We came home from an errand the other day and just sat on the gravel driveway together for an hour. We dug a little hole, we picked up rocks, Rosie threw dirt on me a bunch, and it was one of the sweetest, nicest hours I can remember from the last year and I'm trying to get more of that. I feel like I have been distracted as a father and I hate that. I'm pretty good at doing my dad duty but I'm lazy and not 100%. I could be contributing more to make sure our daughter doesn't grow up to be some media obsessed/totally detached loon like her father. More sitting in the dirt. More walking up to the barn to mess with Bart the barn cat. More silly games and activities.


That's all part of getting better, and even though I feel totally normal physically, I'm mentally shut down. You know when your Pokemon gets poisoned or something and it can still function but loses a little HP every turn? Yeah, just like that. You know exactly what I'm talking about. Negative Feedback Loop. "We tend to think about the worst thing that could happen, so when you start thinking that way, flip it around. Think, what's the best thing that could happen?" It seems like some basic psychologisty stuff but that has been pretty helpful. That and lying in a dark room listening to guided meditations that put me in a log cabin with a crackling fire. Or vomiting a few thousand words into the public sphere because even writing in my private little journal is too much work these days.

So anyway, they're cutting me open on Wednesday and I'm sort of excited. Mostly because it's one of the few proactive moments in a year of waiting around for proactive moments. There's not a lot you can do on your own to fight cancer, so you just wait. And wait. And wait some more until your appointment. And then they stick a fucking camera up your nose and you just want to burn the hospital to the ground.
______________________________________________________________________



Because this is a music blog, and because I'm obsessed with pinpointing every moment in my life with a song, I made a cancer playlist. Unlike the playlists I cobble together in a couple of hours to represent something or other, this is one I've been compiling all year. That's it up there, up top, and I'm going to annotate it because writing about cancer surprisingly takes my mind off of cancer.

1.) The Mountain Goats - "Heel Turn 2"
I was lucky enough to attend John Darnielle's solo show at the Lawrence Arts Center a couple months ago and it was hands down the best concert I've ever attended. I could watch him do that show once a week for the rest of my life. It was loose and informal and featured some of the most devastating arrangements of songs I've loved for years (and anecdotes too! Darnielle spinning a yarn about an underheated house by some railroad tracks in Ames, Iowa before saying "This song was written in that house" and playing "There Will Be No Divorce" is the stuff I live for, and I think my whole body tingled at that moment). Beat the Champ came out right around the time of my Radioactive Iodine treatment and I preordered the limited edition vinyl version the day after I was diagnosed with Thyroid Cancer so I would have something to look forward to. I listened to Beat the Champ a lot in my isolation chamber, but trapped in that room, the refrain from "Heel Turn 2" made my bones chill. It's about a beloved babyface wrestler turning heel and accepting the repercussions because he can't keep being the favorite. "I don't want to die in here," he says. I wrote a big long post about how fighting cancer is like wrestling, and I wrote it because that was the experience I laid on top of this record. Naturally, Darnielle's live rendition at that Lawrence show gave me megachills. I think about this song a lot, especially at the hard and dark parts and, like most Mountain Goats songs, it gives me strength.

2.) Why? - "These Hands"
I think about this song a lot. Yoni Wolf writes the sort of lyrics that you think of when you're trying to fall asleep at night. The guy is a wizard. I think I like this track so much right now because it tonally captures how I feel. If this were Happy Feet this would be my heart song right now. Also, have you seen Happy Feet? That movie is WEIRD. It opens with a 20 minute mating ritual, a lady penguin sings a Prince song! "Let's talk about eggs baby." Rosie brings me the DVD case after we have watched the first half hour of Frozen for the fifth time, and I put it in and we are both a little confused and a little shocked and just want the safe comfort of Frozen.

3.) Andrew Jackson Jihad - "Linda Ronstadt"
A beautiful and uplifting capture of what it feels like to be caught off guard by something tremendously beautiful and to feel that beauty through your whole body to the point of tears.

4.) Cheap Girls - "Hey Hey, I'm Worn Out"
I have the acoustic version on my iTunes playlist, but the title captures the tone. Also, it's from an album called My Roaring 20s and that's a great goddamn album title.

5.) The Mountain Goats - "This Year"
A requirement for playlists like these. An important sentiment.

6.) Bright Eyes - "Beginner's Mind"
I still feel like I'm the only person who REALLY REALLY loved The People's Key. I think it's the best Bright Eyes album and it actually led me to abandon my atheistic tendencies and to leave the door open for the spiritual. I still don't have any place in my life for religion, but I do have a place for feeling ones place in the universe and being a sort of seeker person, if that makes any sense at all.

7.) The Tallest Man on Earth - "The Dreamer"
I just love that line "Sometimes the blues is just a passing bird." That's the title of the EP from which this song was culled, and in addition to listening to TTMOE's latest Dark Bird is Home in my isolation chamber, I listened to this EP a lot too.

8.) Volcano Choir - "Tiderays"
What I love about Volcano Choir is they take a guy whose songs and lyrics have meant a lot to a lot of people of late and basically pull page from the My Bloody Valentine playbook and go vocals not lyrics. Justin Vernon's lyrics are more free association poetry than anything out of the Bon Iver songbook (though his last album veers in that direction). I'm still very much a lyrics guy when it comes to music, but this year I let myself off my leash a little and got into stuff that was could make you feel a certain way without explaining itself to you.

9.) Youth Lagoon - "17"
I ignored this band at first because there are too many vaunted weird little bedroom pop acts to keep track of. But this song was in the movie The Kings of Summer and I immediately tracked it down. Still haven't listened to the full album, which is strange because this song is incredible. The sound and sentiment of it is appealing on a lot of levels, but the musicianship is devastating. It's so sneaky! It sounds like a little guy in his bedroom, just singing this mournful little song but it's slowly building until it's quickly building and then this drum machine drifts in and the whole song totally shifts and delivers the last chorus. Floors me every time.

10.) Frog Eyes - "Claxxon's Lament"
This song has been floating around for 10 years. It was the Wolf Parade cover I heard first, which led me to Frog Eyes, who were a little too weird for me. They still are, but Carey Mercer's songwriting chops are undeniable and his album Carey's Cold Spring (written after the death of his father and released just after he revealed his diagnosis with throat cancer) is a gorgeous, heartbreaking record. I mentioned my love of lyrics, and the way Mercer forces them into songs in interesting ways with different vocal inflections is one of his great gifts. He wrote a great essay in response to naming one of his albums Fuck Death and seemingly inviting cancer into his life via not respecting death, and I found that to be a great read and a great resource.

11.) John K Samson - "Taps Reversed"
John K Samson's Provincial has been following me around since its release in January of 2012. I had already loved the Weakerthans for many years, and since they only released an album every four years or so, I had learned to get the most out of them. I listened to this on the way to the hospital on the day Rosie was born. I soundtrack my life all the time, but I hadn't prepared for this. I had a big delivery room playlist, but nothing for the short voyage from the house to the hospital. So I put this on, because it always gives me the feels. That day was so amazing, and I'm glad that album was a part of it (the other side of that coin is that when the doctor was breaking Jenny's water, Lady Gaga came on shuffle and Jenny exclaimed, "Turn it off! Oh god, did I just have my water broken to Lady Gaga?!"). A year and a month later I was going back to that hospital for my radioactive iodine and it was impossible not to notice the two very polar opposite circumstances. I listened to this album after my thyroidectomy too. My mom stayed with me most of the time, but on my second day there she left to get food or to go home and I had a couple hours to myself. I tried to sleep because I slept poorly the night before (see: doctors coming in every 2 hours to take my blood, uncomfortable hospital bed, literal pain in neck, tubes coming out of arm, etc). I couldn't sleep, so I put on Provincial and just stared out the window and listened. The song "Letter in the Icelandic from the Ninette San" hit hard because it's about a man dying of tuberculosis writing a letter to his brother back home telling him to get on with his life and has little details like kids from the children's ward running by his room on their way to a Halloween party. It's a real downer, and one of the highlights of Samson's incredible songbook (and considering that I'm going to be in the hospital on Halloween, I'll probably listen to it and mournfully stare out the window waiting for my wife and child to stop by on the way to trick or treat). "Taps Reversed" is less of a downer, and one I found myself fixated on this year. It's a duet between Samson and his wife Christine Fellows, an extremely talented singer/songwriter herself. It's a little song about an old house and tedious home life stuff but told with such beautiful language like "The old house drinks everything we hide/ And hums sad songs that keep us up at night." I love that an album almost four years old can still reveal new sides of itself.

12.) Frank Tuner - "Keira" (No Use for a Name cover)
The tribute album to dear departed No Use for a Name frontman Tony Sly is a more interesting listen than any NUFAN record on its own. Sly was a great songwriter, and I'm not even gonna add the "for a dude in a pop punk band" because, hearing all these varied artists' takes on his songs shows that the world lost a talented and soulful guy. He wrote "Keira" for his daughter, and it's a really, really, really sad song about a dad feeling sorry for being gone all the time on tour. Sly's death gives it a new, deeply sadder meaning and Frank Turner's sparse rendition is one of the saddest things you will ever hear. It snuck on shuffle one night and I haven't been able to get away from it. See above: all that anxiety about not getting to see my daughter grow up. It doesn't matter how treatable the cancer is, once you're diagnosed you that door of death anxiety gets blown wide open and you just live there staring at it indefinitely. The time I spend with Rosie is the best time I have, and it's the thought of missing the random, quotidian stuff involved with watching a child grow up that makes my heart ache. If it was just me, I don't think the cancer would be such a big issue. I'd be able to accept it more. It's not that I had nothing to live for before Rosie, it's just that with Rosie I have something I really need to live for because she needs me. This is the sort of stuff that makes me seize up on a regular basis. Very excited for the day someone says "You're clear for now" so I can get back to being a 100% focused dad.

13.) The Tallest Man on Earth - "Dark Bird is Home"
The title track and closing track from Kristian Matsson's latest album, an album I listened to on repeat in the isolation chamber. One full of death imagery, but also one full of acceptance of life's inevitability.

14.) The Extra Lens - "Dogs of Clinic 17"
I snuck another John Darnielle track on there because that's who I am. My reading of this is that it's from the point of view of a dog in a medical testing facility, and it ends with a line that's a really intriguing blend of optimism and bleakness: "There's a light in the window/ There's a light in all of us trying to get free/ There's a light in all of you who hear my song/ There's a virus eating its way through me." And then there's a weird little synthesizer bit!

15.) The Weakerthans - "Reconstruction Site"
I mentioned how Weakerthans albums only came out every four years and I had to make them last, and I've been making Reconstruction Site last since 2003 when it was released and I bought it at Best Buy. They used to have indie and punk CDs on sale for like, $5 right when they came out! When I was 17 I loved driving around Olathe. I used to drive up to Best Buy just to go to Best Buy, or go to Borders and sit and read. You don't think about that new independence you get when you learn to drive, but it's unlike anything else you will ever experience. It's where you really get to start being a person. Where you crawl out of the pond scum and walk out into the wilderness. So I bought this album on one of those excursions. I was already a Weakerthans fan, having made Left & Leaving my all-time favorite album the year prior, and they represent the dividing line between my punk rock days and my indie rock days. It was fitting because John K Samson played bass in Propgagandhi, one of the more violently political and noisy punk rock bands (and funny, too) and the Weakerthans was Samson's way of moving away from that to write more personal songs. Reconstruction Site is a concept album about a man with terminal cancer and, according to Wikipedia, "A song cycle about grief, regret, loss, and eventual hope." So needless to say I revisited this album and put my own circumstances on top of it like I do. I can't mention the excellence and generousness John K Samson's songwriting enough. To have crafted albums I'm still discovering and learning about 12 years after the fact. This song draws up a lot of nostalgia and it's funny because this song is about having nostalgia drawn up via the protagonist remembering a very small and detailed moment from childhood from his hospital bed. It's the details that make us feel connected.