Adventures in Cancerland

bscotchsam

These are the posts I'd made to my personal facebook over the course of my previous treatment. I'll be compiling them all into the book that I NEEDED when I got diagnosed, but that didn't exist. Though, with this second diagnosis, that'll have to wait about 6 months. And it will be twice as long.

Entry 1 - I'VE GOT SOME BAD NEWS. 10/31/2013

This past Monday I was diagnosed with Lymphoma, cancer of the lymph system.

I underwent a number of other tests and scans in the past few days and the doctors have found it to be a rare, hyper-aggressive form. It has, in probably three to six months, spread to my spleen and liver and a few of my bones.

The good news is that it is curable (70-90%, depending on some CRAP). The more aggressive the cancer the better it responds to chemo. Starting sometime next week I'll begin the chemo process at Barnes Jewish in St. Louis.

The bad news is that the treatment must be as aggressive as the cancer. This means that I'll likely be in the hospital for the majority of the next 6 months, though we're still getting treatment worked out so I'll have more to say on that later.

I won't take a "LIKE" on this status as you enjoying me having cancer, but rather as you supporting me and my family in this battle. If you do like me having cancer then I WILL STAB YOU IN THE EYE HOLES.

I'm handling this emotionally quite well and am actually still quite happy, as is my custom. I will slay this dragon with the help of all you lovely people and a fistful of modern science.

You're welcome to call or text if you'd like, as I know it's a bit... SHOCKING. I wanted to let everyone know the facts of the matter rather than have it delivered all twisted from shadowy figures.

Thank you all for sending your love and keeping me in your thoughts. It's going to be a wild 6ish months.

Entry 2 - CANCER HUPDAAAAATE (pronounced HUP-DATE): 11/8/2013

The longest (relative) week of my existence has passed. On Wednesday we saw the docs at the Siteman Cancer Center here in STL. They put up with my harassment QUITE WELL and managed to stifle their laughter until about 45 minutes into their description of my aggressive lymphoma when I described the success of my visit to the fertility clinic (for BANKING THEM SQUIGGLY BABIES) as a flash flood inside of the lab.

The one piece of news they didn't have back was whether or not there was the presence of the C-MYC gene in my cancer. If it was present, treatment would ramp up and I would indeed be hospitalized. Moreover, my prognosis would get considerably worse and it would be a much harder time.

If it were not, treatment would be the "usual" drug cocktail plus another to protect my precious brain, and I'd 'only' be hospitalized 3 or 4 times for 5-7 days each, rather than for much, much longer.

Wednesday night we celebrated tentatively. The treatment was immensely better than what we had originally been told when in Iowa... so long as that damnable C-MYC didn't come back positive.

And so we waited.

Thursday rolled around and at 1pm in the afternoon my nurse, Barb, gave me a shout via cellphone and relayed the news. "SAM. I HAVE SOME GOOD NEWS. C-MYC WAS NEGATIVE." We were on the street near Pi and a bundle of pleasant looking pedestrians and I yelled at the top of my lungs "FUCK YEAAAAAAAAAAAAAH, BARB!"

I have cancer; I'll yell where I want.

We spent the day bathed in relief, as that was the first time since this thing started two weeks ago that good news arrived rather than bad.

This morning I began chemo. I've had a boatload of chemicals pumped into my system and had a minor allergic reaction to one which was exciting in a minor sort of way.

I will not have to spend the entirety of my time in the hospital for the next 6 months. Instead, I'll be going in once every 3 weeks for out-patient chemo, and after 3 cycles will begin being hospitalized for the last drug that is my brain guardian. It's so POTENT that they have to monitor my pee until they can't see a single bit of it, and then I get to leave.

This is still going to blow harder than a humpback whale in a typhoon. BUT. I'm now on the offensive and finally got some good freakin' news. So I'm feeling good.

ALSO, I shaved my head. Because everyone knows Cancer is a cross-eyed, three fingered barber with a meth problem. My brothers, Adam Coster and Seth Coster, followed suit. As did Diana Zeng, my girlfriend, though I pulled the cancer card and asked her to keep some of it because she has a LUSCIOUS MANE.

Entry 3 - Cheezits 11/13/2013

I WAS COOL WITH THIS WHOLE CANCER THING UNTIL I OPENED THIS PACK OF CHEEZITS AND IT DIDN'T TASTE AS GOOD AS IT USED TO.

CANCER I AM GOING TO MOUTHSLAP YOU SO HARD I GET A CHEDDAR CHEESE RUSH.

bscotchsam

Entry 4 - ADVENTURES IN CANCERLAND - Episode 3 - "Cancerman Hits the Gym In The Face."

Days 9 and 10 after my first round of chemo blew harder than an unfortunate beluga whale in an F5 tornado. I received a shot to boost my bone marrow's production of various blood cells on Day 3 because my counts were extremely low. The shot came with a warning label of possible "significant bone pain."

I’m now certain that someone in the label making shop played a practical joke and replaced all incidents of the word “crippling” with “significant.” HAHA YOU ARE SO FUNNY, GUY.

I stepped out of the shower on Day 9 and was hit with a crunch of bone pain in my lower back and hips that nearly knocked me onto the floor. I grabbed the lip of the sink and was greeted by a wave of nausea that seemed to be feeding from the cold porcelain that was now holding me up. I realized I was in for a concussion if I stood much longer so I sat down on the bathmat and got to know the intricacies of the faux-tiling in my apartment bathroom.

I sat on the floor and noted that my anti-nausea pill was the next best step in this morning’s adventure. It resided in the closet beside the shower, a scant 4 feet above me and two feet in front of me.

But I couldn’t get it. I couldn’t move. I sat on the floor for stretched minutes, trying desperately to animate my limbs to grab a door knob that was within arm’s reach. And it was in this particular moment that some part of me became amused. Not by the pain, but by the sense of weakness that had flooded my system. It was the first time, I think, that I’ve ever truly felt it. It was the first time I was unable to even move myself to obtain a goal. The chasm between the desired outcome and my ability to influence it grew so suddenly deep that it was maddeningly hilarious and curiously novel.

I huffed myself up after the pain wave settled down and something inside me, no longer amused but attentive and mildly enraged, pushed me up. I opened the door to let my mother and girlfriend know what had just happened. (While I recognized later I could’ve called for help at the time there’s still some part of my brain that possesses a woeful amount of pride. I didn’t even think to call out during Tile Inspection Party 2013, truth be told. I’ve gotten over it by now.)

Fast forward to Sunday morning and I woke up feeling like I had gotten an IV drip of 5-Hour Energy during the night. I went for an ambitious walk with the fam and did push-ups and handstands on anything that was flat. Handstands are my way of flipping off cancer, as it turns out. My heart swore at me mildly during the process but seemed to enjoy the exuberance as much as I did. And I enjoyed it more than I think I ever have. I could move, flail around, push on things, jog. I felt like a rusty robot someone had finally taken the time to oil up and debug. The afternoon rolled around and, after a short break, I went and played catch with @sankalp in the park. Besides my heightened ability to feel wind with my skull everything seemed shockingly normal.

The last 4 days have been great. I have more energy than I’ve had in months. Like a frog being slowly boiled I didn’t realize how much energy had ebbed out of my system. I’ve gone for runs each of these four days and even managed to lift some weights at the gym this evening. I’m far from 100%, but I’m genuinely in a better position than I was a week, a month, or even six weeks ago. I know it’s not going to last - I’ve got until next Wednesday before I’m pumped full of chemo again - but I appreciate my body in a deeper way than I think I ever could have before going through all this.

I plan on practicing exuberance every day until chemo tries to tell me I can’t. And then I’ll do a one-armed handstand atop a statue while waving my middle finger high enough for the now crippled dragon, Cancer, to see.

bscotchsam

Entry 5 - Adventures in Cancerland - Episode 4 - Everything that kills me makes me feel alive

I do not wish to lose the lessons I learn from this cancer once I am clear of it. That is, at this moment, my greatest fear; that this massive opportunity will pass over me like a tidal wave and I will remain unchanged like a silly statue in a low-lying marshland. Death may be rapping lightly on the door but it’s life that has me more concerned - it’s occurred to me that life is more difficult to handle and tends to drag out for quite some time.

I had my second round of chemo on Wednesday. I sat with my mom in a room with 8 other people who were similarly being pumped full of drugs. The atmosphere was cheery and someone wheeling an IV brought by Evergreen shaped cookies that tasted like they looked. While I didn’t have an entourage present as I did for my first treatment I reflected on everything I had on my person: A blanket made by Dana Huth’s mother, a box of cookies from the Danish Maid Bakery in Grinnell, a mobile controller from our developer friends at MOGA, a dragon figurine from Kevin, and a wristband from the “SLAY THE DRAGON” fundraiser some wonderful humans in Grinnell started. The watch my girlfriend Diana had gifted me sat astride my wrist keeping track of the time it took for me to get medicated. I was wreathed in support, truly.

The treatment took a solid 3.5 hours, with two nurses rotating drugs on my IV and everyone else’s as if they were restocking shelves at a grocery store. The banality of it all struck me as being a bit comical - I sat with a bundle of other people undergoing similarly life threatening scenarios, yet we all looked about as excited as six year olds in a Middle Eastern Political Theory course. Where was the invigoration? Did it take one cancer treatment to make it seem as though being treated for cancer is a completely normal thing to do on a Wednesday afternoon? WHERE WERE THE TRUMPETS!?

I finished the treatment and felt just about fine. My counts had come back from the lab and, GOOD NEWS! I was back to roughly healthy levels on everything. The also-good-but-slightly-aggravating news was that I would be able to be hospitalized for the Methotrexate binge sooner, on December 11th. Great, horrible news. I headed home and slept like a rock.

I didn’t feel particularly present during the next couple of days. I had a rage growing inside me that needed a serious beatdown on a moment-to-moment basis. It was the Prednisone, I knew, which was boiling up something wicked in me. And it took a startling amount of effort, more than last time, to keep it contained. It’s a steroid and, when taken in the massive doses I do post-chemo, kills cancer, increases appetite, decreases pain and nausea, aaaaaaand instigates rage.

About 90% of my being during the holidays was devoted to keeping the hulk inside my self from bursting out and saying something rude or simply being angsty. I think it may’ve been a defense mechanism of my ego to simply put me out for the worst of it, such that I wouldn’t have to see myself being a mean person. Or it was the chemo (probably the chemo).

Rage isn’t my default state. IN FACT, my default is far from rage. My freshman year of college I took an introductory course on positive psychology and each week we took a survey. The survey was meant to establish a baseline of happiness and allow each student to, at the end of the semester, see how their happiness compared to the class and waivered around midterms and finals seasons. I remember distinctly when the professors handed out our individualized packets and I turned to my Hedonic Balance page. The scale goes from -7 (super sad) to 7 (ecstatic). Mine sat at a static 6 for the entirety of the semester. One point away from ecstasy.

I considered this completely normal until we went over the class results. I was, as it turned out, the happiest person in the room, and by a wide margin. The average value for the entire class hovered just around 1. In other words, most people’s responses to how they felt on any given day was a mildly adventurous “MEH,” while mine tended to be a resounding “HEYOOOHOOOHOOOOOOOOOOOOOOAWWWW YISSS WORLD TIME WOOHOOOO!”

Being enraged for the better part of 4 days gave me my first realization from this round: Having a default ‘ecstatic’ mental state has been a massive advantage I’ve enjoyed in nearly every aspect of my life. High on Prednisone and full of anger I found myself unable to propel through goals that I’d normally crush beneath my tender pinky toe. For example, when we returned from a lunch the lively part of me screamed a need for expression and wanted to draw - the enraged me slapped it in the face, threw it in the cellar, and then made me sleep for five hours.

While I’ve gone through depression and have certainly seen this goal clogging routine before, I’ve not been of the mind to have this realization up until now. What a stupidly powerful gift it is to wake up and be surprised at how beautiful and neat the world is.

Speaking of beautiful and neat things, Diana’s return from her own family was met with a melting away of the aforementioned rage haze that had settled on my head for the prior few days. My family laughed together the day after, noting how my disposition had shifted from angsty and silent to happy and boisterous upon her arrival. I know not what witchcraft she is wielding but the way she looks at me ignites soulfire that could atomize this entire planet. And, paradoxically (or so I thought), rather than dampen that internal fire it appears that the cancer has only made that furnace rage in a deeper, more colorful way. Not just my love relationship, but my familial and friend relationships have all taken on a deeper, brighter light than they ever had before.

Which brings me to my second realization from this round, which I’ve had difficulty putting into words because it feels too big, prescriptive, and fancy. Adversity, like this cancer, seems to me to be the best seed to a rich life. It gives loved ones the opportunity to show the strength of bonds that are otherwise untested and therefore unknown. It gives perspective on things easily taken for granted. It gives a reminder of how tiny our time is, and how huge our humanity is.

Adversity gives. And this dragon, Cancer, turns out to be hoarding a lot of sweet loot. I plan on taking as much as I can carry back with me.

bscotchsam

Entry 6 - Adventures in Cancerland - Episode 5 - Cancer has Sam, and it's Terminal

note: this title scared the pants off everyone. I meant that cancer was going to die, not that I WAS.

We sat in the doctor’s office on my birthday for what was meant to be my third round of chemo. After a long wait we heard a gathering outside the door and a few poorly muted whispers saying “Ready? Are you ready? GO!”. The door cranked open and in walked my doctors, singing happy birthday and bearing a cupcake. I truly don’t know if I was more excited to eat the cupcake or to see the results from my most recent PET scan.

My doctor pulled up my bloodwork from an hour prior and got slapped in the face with concern. It turns out my blood, as mighty as it once was, had been substantially roughened up by the two chemo rounds and the 5-day methotrexate hospitalization. Or, perhaps more accurately, my blood had been minding its own business on its way home from a productive day at the office when it was jumped by a ragtag band of hooligans who beat it senseless and left it on a cold bench to recover.

The chemo was postponed until my blood could repair itself (WOOOHOOOOO?!) and we turned our eyes to the PET scan. Before we got started I asked to see the original one, from before I had received any treatment whatsoever. This turned out to be a bit of a mistake.

PET scans work by watching what parts of your body consume a radioactive sugar. You’re injected with this sugar an hour before you lay down in the scanner, and the scan takes pictures through your entire body in cross-sections. So your thighs come up on the screen like big Christmas hams, and the doctor can scroll from your femurs all the way up to your neck. Anything that is eating the sugar glows with a little white light. The more activity, the brighter the glow.

As we scrolled from my clavicles to my hips on that first scan I realized I should’ve requested sunglasses. The entirety of my insides were lit with white light, as if someone had decided the best way to celebrate the holidays was to line my internal organs with some fancy and sustainable LED technology. It wasn’t just “on” my spleen, as I had previously thought, it WAS my spleen. AND my liver. As we approached the bottom of the scan, my hips and midway through my femurs, that white light just kept popping up like some drunken, demonic firefly with uncontrollable buttglow.

I was mightily interested in the imagery as I’d never seen a PET scan result before and thought scrolling through my own body was freakin’ cool. But when I looked excitedly to my girlfriend I saw a large amount of horror behind her eyes. All the doctors had said it was bad when I was first diagnosed, but I don’t think either of us realized what that had really meant. It was Stage 4, yes, but I could still run a few miles and be awake and semi-lively for most of each day, even if I was generally tired, fevering, headaching, irritated, and required a camel’s portion of coffee to accomplish anything. Seeing the extensive spread of the disease was terrifying. I suspect, had I not gotten treatment, that I wouldn’t have had many more days to look forward to.

This cancer has vastly enhanced my ability to positively spin anything that happens. So while I recognized the terror in the eyes of my loved ones and felt it go through me myself, I also felt a stab of goofy pride. BECAUSE! The week before I got this very scan my older brother Seth and I had run around the lake near his home. It’s about a 3.6 mile run, and while I was slower than usual I still came in a few minutes ahead of him, even after tending to a caterpillar that had foolishly decided to cross the pavement. I basically didn’t have a liver or spleen at this point. IN YOUR FACE, BROTHER!

With fingers crossed we then started looking to the second PET scan, the one from the day prior. As the doctor scrolled through my body, from femur to clavicle, there was no light. Where I expected to see some dim glows or even a few raging searchlights there was nothing. My spleen was pink and unlit. My liver, the same.

ONLY ONE LITTLE SPECK OF LIGHT, in a lymph node under my left armpit, showed up. And even it was dim. The thing looked orange, like a tired sun.

PET scans only reveal things that are roughly 1 centimeter or larger, so this doesn’t mean I’m clear. What it means is that the chemo is working, and working beautifully. My day to day troubles are now much more the result of the chemo than the cancer. To now reframe things more appropriately:

I have chemo. Cancer has Sam.

http://i.imgur.com/LIMq9NZ.gif (obviously I’m the caped man and cancer is the poor beach fellow. special shout out to best friend Sankalp for the “Cancer has Sam” tagline.)

Before my 24th birthday last week and the above adventure, and the reason my blood is now that of a chronically starved vampire, I was hospitalized for 5 days. I had to get a massive dose (3500 milligrams) of a drug called Methotrexate. That drug, in high enough doses, crosses the protective blood-brain barrier and gets into your spinal fluid. I needed this because my cancer, as stupidly aggressive as it is, was likely trying to bully its way in there, and methotrexate kills the pants off cancer. And also everything else in your body. In fact, if your pH is low methotrexate can literally crystallize inside of your kidneys. Whether or not those could be harvested a la "Breaking Bad" and sold in some organic meth market is beyond my understanding but I’ve made a note. FOR SCIENCE.

The hardest part of this entire process has not been the bone pain, the nausea, the fatigue or constant irritability. It was that hospital stay. It took me 5 days to “clear” (pee out) the methotrexate. I drank 7 liters of water on the first day in an attempt to help it along, but it seemed that no matter what I did it was simply a function of time, rather than effort. For all my flailing nothing I did really seemed to push the drug out faster.

Being trapped in a hospital does not allow you to forget that you are wildly ill. While at home I can work, play, cook, and do whatever with enough focus that my mind wanders away for hours at a time from the reality of my situation. I did not realize the extent to which I had been depending on this until it was taken from me. Getting zoned in while in a room where you are checked on every 45 minutes, must pee and therefore wheel your IV pole around every 30 minutes, have your blood drawn twice and your IV bags swapped 4 times per day, and are buffeted by a choir of shrill warning alarms every 3 minutes is damn near impossible. Your flow is perpetually broken.

bscotchsam

It also compounds the feeling of serious illness. My port was accessed (read: there was a needle in my chest) for the entire 5 days, and I was attached by a short tether of tubing to my IV pole for the duration. Getting up and grabbing something from across the room became a weird pole dance that would never attract a deluge of one-dollar bills. Everything made me feel as though I was ill and completely out of control. And I was.

I lost it a few times. The third night when the methotrexate level came back and it wasn’t anywhere near the escape threshold I broke down. My IV pole would not keep itself quiet, screaming about a bubble in the tubing every four minutes, and I had had hiccups for about four hours. Not normal “OH THAT’S CUUUUTE” hiccups. Painful, diaphragm cramping hiccups. I was so out of control my breath wasn’t even mine to command.

But my people, my lovely people, helped out as much as they could. Diana stayed with me every night, despite going through an insane gauntlet of finals, working, and cinching up some extra curriculars. My mom chilled and fell in love with Dexter (the show), and Sankalp and Nish binged on video games with me on that third and arguably darkest day. A handful of friends came by with food from “the outside” and a few came just to chat. The nurses were extremely hard-working, nice people.

In the midst of all that uncontrollable anger the thing that calmed me down was thinking of everyone who has been so wonderful to me. I’ve built a rolodex of positive events to spin through and pull up when things go dark: Mark LaPlante and his crew at Blades on Washington shaved the heads of around 20 people at a fundraiser in my name two weeks ago; People from my hometown not only self-organized a “Slay the Dragon” bracelet fundraiser, but have been dropping off meals for my family every day while I’m here; The students at the Art Institute organized a League of Legends charity tournament; Hell, the proprietor of the Danish Maid Bakery gave me a cookie when I picked up my birthday cake.

As the days go on I'm ever more inspired by the people in my life. From all out events to little notes of kindness, so many people have reached out and been truly compassionate. Every act, every mote of understanding and tenderness that has been pressed my way has added to my reasons to beat this thing. It's not only given me strength but a greater sense of why I'm alive in the first place.

Nietzsche said, “He who has a why to live for can bear almost any how.” I feel I've collected so many 'why's in the past two months that I could do Atlas' job.

bscotchsam

Entry 7- Adventures in Cancerland - Episode  6

Everyone's posting pictures of their dinners and I'm just sitting here eating pills.

I had chemo round 4 (of 6) today and it is hitting me substantially harder than the others. I was delayed by a week because my platelets were so low I was at risk for spontaneous bleeding, ANYWHERE IN MY BODY, and in that time I managed to forget the crappiness. I think it's in some ways easier to just push through all the way to the end, feeling crappy all the while, and then be done and feel good once it's over, rather than bounce between being highly functional and sitting in a chair staring out the window while suppressing waves of nausea. It's the change that's difficult to manage.

One of the possible causes for my platelets being so low is that I may have a heparin allergy. Oddly, despite the fact it's a drug used to destroy clots, one of the other things it can do is cause random clotting (should you be allergic). So you can be wandering about and suddenly, silently, throw a clot into an organ, brain, leg, arm, or some such and enter into a whole new level of terrible problems (stroke, limb loss, organ failure, aww yiss).

The one good thing I will say about cancer is that it makes you die on a SORT OF manageable timeline. It's not like getting hit by a car or throwing a clot - you get some time to say good byes, make sure people know you love them, maybe realize how cool it is that you can tie your shoes or learn to appreciate the simple weight of another human's hand on your shoulder. Throwing a clot isn't that nice, however inappropriate the word may be here. And though there's only a minor chance of it happening and it's still to be determined if I'm allergic to heparin, I admit that it greatly aggravated me to have the possibility of INSTANT DOOM floating above my head.

At brunch on Saturday, after I'd sat down with a bundle of friends and we'd dished out the food, I let them know that if I started slurring my speech or clutching something that I needed to go to the hospital ASAP. It went something like this:

Me: HEY, SO. I just need to let you guys know, if I look like I'm basically dying then take me to the hospital because that might be a thing now.

Friends : *nod*
Me: OKAY, LET'S EAT.
I have wonderful people in my life, truly.

On Sunday I tried to pay back my brother for all of his do-goodiness over the past few months and helped him move across town. He's been driving to my place nearly every day for work and literally never complains about anything. He's been exceptionally tactful at rerouting my feelings of being a lazy piece of trash and keeping things in perspective.

Me: I HAVE MADE A SINGLE FREAKIN' EYEBALL TODAY WHAT IS HAPPENING ALSO MY NOSE JUST STARTED SHOOTING BLOOD ALL OVER.
Seth: YOU HAVE CANCER, SAM. SLAP A KLEENEX IN THERE AND TAKE A NAP.

I appeared at his house and, while he was getting the U-HAUL ready, threw his bed frame across the apartment and outside. I had a boatload of energy that day and I DARE SAY IT WAS PUT TO GOOD USE. It was only 4 or so hours of lifting and throwing things around before we ended up at his new place with everything intact. It felt good to be strenuously active for so long and at the end of the day I realized I'd probably gotten more out of it than he did.

He got his stuff moved, I had the chance to reaffirm that I could move things.

I also had my second hospitalization, two weeks ago, for the methotrexate binge. A number of enraging things happened as well as some wonderful ones, the funniest of which being the interactions I had with the attending doctor. The chemo floor average age is around 64.

Me: *sitting on bed, shirtless, reading*Doc: *enters into room* "OOOOOOHHHHHHH! WOW. YOU ... YOU LOOK GREAT!"- 2 days later, before I get to go home -Doc: "Okay if you could just sit up so I could listen to your heart..."Me: *sits up*Doc: "NO HANDS!? WOOWWWW LOOK AT YOU!"

I cleared the methotrexate in only 2 days this time, down from the 5 it took for the first visit. My oncologist said that's the fastest she's seen anyone clear it, and I think it was largely due to my approach to the hospital stay this time. I came in, chilled out, set up the space so I could work, built a routine of Eat-Read-Exercise-Work-Game-Communicate that I cycled endlessly to pass the time, and Sankalp Bhan delivered pomegranates to my poisoned body. I focused less on escaping the place and more on making my stay there livable, as if I would have to be there for a year. The time passed quickly (though never quickly enough) and I even felt less poisoned than the first time.

My dad took up roost for that hospitalization and I took advantage of his presence. The moment we escaped we went to Home Depot, purchased a variety of boards, and proceeded to make a nifty little shelf to expand my puny counter-space. It seems dads know thousands of little things that make life easier, and this gave me ample time to extract them, now that I'm old enough to pay proper attention.

I'm 2/3rds of the way through treatment. Should my platelets not tank again I am on schedule to have my final chemo injected into this port in my chest on March 5th, 2014.

I wish only for the days to pass meaningfully. Wishing for them to pass speedily seems like it would miss one of the larger points of this entire adventure.

bscotchsam

Entry 8 - Sam Coster encounters a wild ROUND 5 CHEMO.

ROUND 5 CHEMO uses STAB.Sam Coster uses SHRUG. STAB's damage is mitigated!
ROUND 5 CHEMO uses POISON.Sam Coster uses SUPPORT SYSTEM. POISON's effect is halved!
ROUND 5 CHEMO uses BONE PAIN.Sam Coster uses "BEEN THERE DONE THAT". BONE PAIN had no effect!
Sam Coster uses HIT THE GYM.ROUND 5 CHEMO is confused... it hurt itself in its confusion!
Sam Coster uses POMEGRANATES.Sam Coster's defense went up!
ROUND 5 CHEMO uses CUMULATIVE FATIGUE.Sam Coster uses CRAPLOADS OF PREDNISONE.Sam Coster is now ENRAGED!
Going in for GOOD OL' ROUND 5 TODAY. Party time.

bscotchsam

Entry 9 -SO I GOT A BONE MARROW BIOPSY. AGAIN.

But this time I was awake. Let's take a trip down Sam's Haunted Medical Memories for this one.


First you lay on your belly and the nurse (who is actually quite wonderful and has a great sense of humor) prods around on your backside, above your butt, until she finds a spot where your bones are right near the surface.


Once located she says "HOKAY you're going to feel a little sting and a bee sting." And then you feel a little sting, as she suggested, and then the sting of a venomous abomination. This goes away after 4 seconds or so as the numbing agent takes effect.


Then, with noticeable trepidation in her voice, she says "Okay, now I'm going to be going in. Let me know if you feel any pain. You'll feel pressure and me tapping." And then you feel a very odd sensation, which is the vibration of your bones FROM THE INSIDE. It kind of radiates to your other connected bones. It's not painful, but mildly discomforting.


After ten minutes of strugglebussing the nurse laughs and informs you that you can brag to all of your friends that you are a "HARD ASS." She asks if you're an active person and you say yes. Apparently your bones are extremely hardy. She's visibily sweating and hasn't yet gotten inside, despite placing what feels like her body weight onto the metal pole that is attempting to burst through your iron-like insides.


You tell her maybe she should hit the gym and work on her power lifts. She laughs and a few moments later you feel a pop as the rod breaches into your bone. You make a startled noise, as it didn't hurt but created an extremely odd sensation. Your entire body is now sweating, and you realize you've been death gripping your right wrist for the better part of the operation. You take a deep breath and force yourself to loosen up.


After declaring entry a success the nurse says "Okay, now we're going to do the aspirate." You don't know what aspirate means so you say "Sweet." She says "We're going to be taking the blood out of your bone, and you're going to feel like you're getting a bad charlie horse."


You remember when that kid in middleschool punched you in the arm with his middle knuckle out. That was a bad charlie horse. You lived through that when you were 12. This will be cake now that you've grown into your ADULT FORM.


She counts down from three.


"Three, two, one..."


It's as if someone teleported an entire hive of enraged fireants WHO WERE ACTUALLY ON FIRE into the center of your being and quickly followed it up with a liter of lemon juice and a shaker of salt in a desperate attempt to drown them.


You find yourself laughing uncontrollably. Like those madmen in movies you've seen who can't stop themselves from babbling, the laughter just keeps gushing forth. Your lower half is writhing and you're trying to hold it still because for some reason that's the one thing your brain is telling you will make the pain go away. The pain lasts for about 6 seconds, but the laughter keeps on rolling. Your wonderful partner, who has been steadfastly not looking at the needle, places a reassuring hand on you and as your eyes meet you decide that you will do everything you can to make sure they don't have to feel something like that ever in their life.


Your definition of "pain" just got violated. The scale you will use now has this at the 10 spot and anything you've ever felt at a whimsical 3.


The nurse's voice suggests sympathy as she begins the bone core removal. She says "It's like getting an ice core out of a lake, for science." You ask her if it's going to hurt like the aspirate. You're still giggling. She says "Noooo, no, no. You're done with that, we only needed the one." She then begins drilling out a piece of your bone with what feels like a manual-crank drill. The scratchy vibrations echo through your pelvis and into your femurs and spine.


After a bandaid and a few minutes she numbs up the second site. You ask again if she needs another aspirate, one from this side. You need to be sure. She assures you that the aspirate part is all done, it's just another bone core. She says "Okay now you're going to feel a little sting and a bee sting" but your body is so worked up that the little sting feels like an unearthly animal and the bee sting feels like someone pumping fire under your skin. It lasts a few seconds.


You're still giggling.


She quickly completes the breach at the second site and gets the bone core. Some guy from the lab comes in and introduces himself as Greg. You can't see Greg because of the way the bed is facing. He asks why your shirt is off, and you detect an odd amount of judgement in his voice. You had them remove the port they'd stabbed into your chest before you laid down, but you don't really feel like explaining. You only feel like telling Greg what other four letter words you'd replace his name with.


But you're still giggling, so you don't say anything.

bscotchsam

Entry 10 - Adventures in Cancerland - Episode 7 - Leaving the Port Behind

Well that was fast, wasn’t it?

I finished my 6th and final round of chemo on March 12th at 7:30pm. The hospital hangs a golden bell on the wall near the chemo ward which patients ring whenever they finish treatment. I’m relatively certain we were the only ones in the whole building, but ringing it felt like a great thunder of applause, just for me.

I dealt with the usual bevy of chemo side effects for the week after my infusion. BUT. I did so from San Francisco, as Seth and I had traveled with a few friends to the Game Developer’s Conference. Apparently bald heads are a super trendy haircut for men in the games industry, so I fit right in. Though I was tired and ragey the conference and company did a great job of providing enough wonder that I was able to forget about my complaints for most of the day. Perhaps the worst of the trip was simply that Seth and I had to share a bed, which we haven’t done for nearly a decade, and he flips over in his sleep with the force of an alligator death-rolling a gazelle.

Jump to yesterday and I returned home to Grinnell and had my father, @David Coster, cut open my chest and remove the port that was implanted there 4 months ago. I drove myself, which may not sound like much of an accomplishment, but it was a huge reclaiming of my autonomy. Also I scream-sang like a banshee in a jazz lounge so it was probably better that I was alone.

As we walked to the clinic room my other father, @Kevin, brandished a flask of fireball whiskey and exclaimed “OLD SCHOOL ANESTHESIA!” We both took a swig and I swung onto the operating table. Double the fathers, double the fun.

Dad shot me up with novacaine around the port site such that it appeared I had a small water balloon hiding under my skin. Sufficiently numbed, he took to it with a scalpel. To my complete amusement, when he first grabbed the port with the scissorclamps they slipped and it fired a volley of blood and novacaine out of the wound and onto the splatter-tarp (my words, not the medical definition) that had been lain on my chest. I was in high spirits and quite enjoyed the show.

The port was totally encased in a sheath of flesh as though it had found a great piece of real estate in there and built itself a scar-hut. Dad cut through it like a SWAT team with a plasma torch and then we were being gazed upon by what looked like a third purple eye. The port was still trapped inside but as Dad rotated it it appeared to be the iris and pupil of some third being who entered during the treatment. Dad wiggled it around to break it free and with a satisfying pop that is reserved for the most disturbing of zits it came flying out.

Using a pair of scissors he then poked around and found the sutures that tied the piping of the port, which went into my chest vein, and cut them free. With another yank the entire thing came out, resembling nothing less than an embryonic parasite. I was awake the entire time and had forced Kevin to video tape it (something I will not be posting)  for my later examination, as I couldn’t crane my neck enough to see during the procedure. Kevin made faces of ghastly terror most of the time, which was entertaining and made me feel a little bad for him. But only a little.

“MMMM SKIN-SEWING!” Kevin screamed as Dad took a hook and needle to the wound and began weaving it back together. A few moments later it formed a barely visible line which, with some luck, will transform into a redpink line parallel to the one I got when the port was installed. I’ll have a blazing equals sign on my chest for all eternity. F*** YEAH, EQUALITY!

Now I feel as though I’m rejoining the world of the living. The port was the last tether to my undeath, the last thing that was reminding me bodily of the cancer and its effects. To have it unceremoniously thrown into a trashcan gave me a sense of justice I’ve not ever felt. An unmarked grave is what cancer deserves.

There is still one thing that still remains coiled in my chest. And it’s not a question about whether or not the cancer will return. I’m not one to dally over future uncertainties that I can’t do a thing about. That is a bridge I will leap over with a flaming motorcycle if the time comes.

The question that I carry with me is this: After coming so close to dying can I make the changes necessary such that I may truly live?

Getting cancer felt like going on an expedition to an extremely dangerous land that was rife with treasure and savage beasts. I got to come back, which is startling all by itself. And I’ve returned with a different outlook and a sack brimming with treasures. I suppose that’s been part of my urge to write all this down - that I might be able to share some of the treasures I’ve found such that those near me can live as if they’ve been on the adventure, without having to do the nearly-dying part.

The greatest gift of cancer is that those things I find meaningful are now extremely urgent. I have woken up to my mortality. Now I just need to not fall back asleep. Like a fresh cup of coffee I’ve found one question so far that keeps me vigilant:

What would I do if I were not afraid?

What WOULD I do? I would write all of this into a book. A really cool book. The book I needed when I got my diagnosis and in the months that followed - one that highlighted the overwhelming good that can come from a horrifyingly bad situation. One which occasionally broke me down while I wrote it. One that, at the end of the day, was a piece of art that I was proud of, and better for producing.

I would practice vulnerability.

I would share something deeply personal I crafted a few weeks back. It’s a constitution of the self, a sort of codified list of attributes that I wish to embody in a prioritized order. I won’t meet it every day, but it’s my hope that having it around will push me to be the best version of myself. (https://docs.google.com/document/d/1jgICWoTpSe_GxfP2MlLcfbqdEdONyji4tTtExUcRmJA/edit?usp=sharing) I would recommend that every human being on the planet take an hour or two or more to generate one.

I would be unabashedly thankful. The amount of support I’ve received from everyone has been completely overwhelming. I want to say a huge thank you to everyone who has kept me in their thoughts, sent little gifts or food, or simply texted me to keep me company.

And a massive, unrepayable bout of gratitude to my family, closest friends, and @Diana Zeng. You made me live rather than just survive.

And, lastly, I would be poetic.

The dragon is dead.

bscotchseth

Just gonna go ahead and say.... fuck cancer.

bscotchsam

@JCho133‌ I know, RIGHT!? The weirdest thing about having the doom lifted from my future is that I can... plan things again. Not being able to effectively plan something and then try to build toward it is really, really unsettling, and it's only now taking hold that I can kind of do WHATEVER I WANT because I have more time. Frankly the whole experience was really rewarding but damn am I glad that the limiters have been taken off.

I've got a lot of work to do

bscotchseth

Wow... that's truly terrible news. I'm sorry to hear that, Crystal. My condolences.

CyberKlown28

Hi. Is Extreme Slothcycling canceled or postponed?

And can't wait for Crashlands. About time mobile got some good games with reasonable business models.

bscotchseth

Slothcycling is cancelled as of now, though we may make something similar in the future. It was definitely a pretty fun little thing!