Mattie D vs. The Evil C

There was drama. There was heartache. There were flights. But today, finally, I’m in a clinical trial.

In our last episode, I was counting down to my trip to the National Institute of Health in Bethesda, Maryland to screen for admission into a trial. However, my hemoglobin levels cratered. A blood transfusion helped a lot. But getting that bag of backup blood barred me from being able to screen for the trial for another 28 days. Three days before my trip, a staff member called and suggested I just stay home and re-schedule the trip for later. At that point, I had gone more than six weeks without any treatment, so hearing this was a real kick in the liver.

After conferring with my oncologist, and her conferring (fiercely, I’m going to guess) with NIH, I went ahead and made the trip anyway. NIH is huge. A sprawling complex that employs 20,000 people, it was also fortunate enough to be funded in September and avoid the government shutdown. Security is high and the number of people they process through their clinical center is impressive. The clinic I visited was on the 13th floor, because science laughs at your triskaidekaphobia.

Met an NIH oncologist who gave me new hope. A slot in a second trial I qualified for had opened. If I passed the analysis of my CT scan, I could start within a week. This drug was also an oral chemo with fewer documented side effects. It was also brand new. I would have been patient #3. While having less data made it riskier, I kind of liked that. If I’m going to become part of the Great Experiment of national cancer research, let’s go big or go home. I headed back to Little Rock, ready to hear news two days later.

And the call came. From the outset, the oncologist’s tone was very apologetic. The open slot in the new trial… was filled while he and I were meeting about it. Heartbreak. The one silver lining: this doc was now an advocate for me and wanted to find something else. And he did.

Tuesday, I came back to Bethesda and screened. All blood levels were good enough for this third trial. I was enrolled and am writing this from a hospital bed where I’m being kept for my first two doses. The drug is a “sister drug” of the last one I missed. It’s administered orally and this is the best way I can describe it.

All our cells have instruction book on how to cell. Oh, you’re a muscle cell? Here’s what you do as a muscle cell. When cancer attacks, it blocks the part of the cell’s instruction book that tells it how to fight this space invader. In other words, the cancer deactivates the cell’s ability to resist.

This experimental drug essentially goes to cells and says “Hey, idiot, look at Chapter 12! You know how to fight this devil.” It turns Charles Lee cells into Marquis de Lafayettes. As a re-activation drug, it should (please) be less harsh on my body than previous traditional chemo lines. It’s also very new, with fewer than 30 people signed up so far. Part of the trial is figuring out exactly how the drug does the voodoo it does.

And I’m ready for fewer side effects. The time without treatment (10 weeks) meant more pressure from tumor fluid on my GI tract and the inability to put weight on my suddenly too-skinny frame. Hopefully that changes soon. Of course, there’s no way to know, because this is, after all, an experiment. Science!

I’ll be back and forth to Maryland for a few days at a time, less frequently as the cycles go on, unless there are unexpected developments. Bethesda is the new front in the cancer war and it won’t always have the 1˚ wind chill it had upon arrival. I didn’t order the cryo-therapy, thank you.

Here I lie reclined on the frontier of yet another Undiscovered Cancer Country. Even more than usual, no one knows what comes next. I’ll just keep betting with house money until the next thing happens.

Musically, TWO fight songs for the new trial. First, my favorite track from the all-around bangin’ Spider-Man: Into the Multiverse soundtrack. Then, since some readers have wanted more mainstream artists, some recent Imagine Dragons. Man, what’s it like to be in the mainstream? It’s been awhile.

It started with the nausea.

I’ve been fortunate that this hasn’t been the opening to many more entries. The expected nausea in the days immediately following chemotherapy haven’t plagued me the way they do other patients, and while grateful for that, we all know that I find plenty of other plagues to keep me occupied.

Like this one. This nausea came during off weeks, when I was ideally recovering and getting stronger before the next treatment. And it could be relentless. I knew I wasn’t pregnant, so the doc and I tried to think of other reasons.

She felt that sugar could be contributing and looking back at my eating vs. when I got queasy, this made sense. Sad, sad sense. Because this is sugar, I love it and it’s in everything. Especially milk, my lifeblood since my earliest days. Happily, there’s an ultra-filtered milk that I can keep down without having to resort to various juices that claim to be milk in an effort of mass delusion. Anyway, no more frozen sweets for now.

The sugar purge helped some, but not enough. I ended up in the ER on a Saturday night and was almost admitted to the hospital. Believe it or not, I’ve never spent the night in a hospital, even with all the treatments and procedures that have accompanied Hipster Cancer. Once enough fluids and a little food stayed down, they were convinced to let me go home.

Two days later was chemo. But I felt like I wouldn’t be getting it and packed accordingly. Sure enough, instead of getting an infusion, I got an admission. Three nights at UAMS. It was during this stay that a CT scan showed the likely culprit. The FOLFIRI had lost its effectiveness and tumors were starting to grow again. Fluid pressure on the outer lining of my stomach and guts kept food from settling properly. Trial and error produced the right combo of drugs for me to eat and I went home.

I made it through 20 treatments on Gemzar/Cisplatin and 22 on FOLFIRI. There’s a third line of chemo on deck, but we decided to wait a few weeks and chase hard on some clinical trials again. Many trials only accept patients that have had two chemo lines, max. Starting a third would disqualify me from a big chunk of those trials going forward.

After some submissions and (kindly) phone harassment, a very nice case coordinator told me that last Wednesday, a panel of doctors at the National Institute of Health would be reviewing my medical history and determining whether they should enroll me in a federal clinical trial.

That day, I turned into a high-school kid waiting to hear back from a potential date. “Nobody use the phone, she might be trying to call!!” Wednesday passed, no word. The Thursday work day passed, no call. Then, I checked my e-mail and there it was. Sneaky NIH. I’d been invited to a final eligibility screening, and if I passed, I’d be enrolled in a clinical trial.

This is exciting. Trying to get too excited about it, because this is not a done deal. In three weeks, I head north for a day of tests, scans, and screenings. Fewer than 10% of cancer patients make this far in the clinical trial process, which, odds-wise, is nothing compared with the odds I’ve faced to get this sick and then survive this long.

I won’t go into details about the trial itself, because I don’t know how much I’m allowed to talk about it yet and don’t want to do anything to ding my chances of making the cut. Let’s just say, it’s cool and it’s cutting edge.

The next three weeks will be trying, as I can’t get any additional treatments until NIH accepts or disqualifies me. If they do reject me, we’ll start new chemo right away. But between now and then, I’ll be trying to control nausea, keep some semblance of energy, and put on some weight, as I haven’t been this underweight since my radiation treatments two years ago.

That’s all for now. The next update will come when I’m starting my next treatment, be it here or in Maryland.

Musically, here are two artists I haven’t featured on here before. One nostalgically looking back, the other hopefully looking forward. Merry Christmas and Happy New Year, everyone.

And the theme for Season 3 of Camp Chemo is… more chemo. On Mondays we wear needles.

Just like the start of last season, we made inquiries on clinical trials, looked at other options, and settled back on chemo. For Season 2, it was the Gemzar/Cisplatin cocktail. After two months, we learned it wasn’t working anymore and switched to FOLFIRI, which I’ve been getting ever since. This fall, that’s what I return to after the summer break. So far, it doesn’t show any less potency, but it will be a couple of months before we know for sure.

The ideal clinical trial is still the shining city down the path, but there are many turns to navigate and potholes to avoid. My tumors that haven’t already been mangled by the deadliest bedazzling are harder to reach and to biopsy for samples needed to make sure I fit trial criteria. Plus, some of these treatments are still experimental enough that it could be months before we know if they’re working. A risky gambit from where I’m standing/sitting/reclining/laying/napping/drooling. Therefore, chemo remains the safest bet for now.

Another entry this week for the Journal of Weird Combinations. I received dental work while receiving chemo. Not something for a bucket list, unless you’re a masochist. Yet, there I was in the chair, my chemo needle still in, while my periodontist tinkered with a few teeth he wants to get back in line. There’s an odd optimism with dentistry during cancer. No long-term plans, considerations, or strategies, just the task of finding something you can fix and making it better. Simple problem-to-solution journeys are in short supply around here.

One thing I did cross off the bucket list during my break was seeing Hamilton in Chicago. Yes, it’s as great as people say it is. I won’t go into gushing detail, but I will post a song. This one almost got me to tear up. It starts as a lovesick Aaron Burr ballad, then escalates quickly. Pretty easy to find comparisons.

Then, the title of this post. As people have asked me this week what it’s like being back on chemo, I’ve found myself answering “same as it ever was” multiple times. Therefore, I share with you my Talking Heads earworm. And you may ask yourself, well, how did I get here? Maybe I’ll know more by the next post.

We’re back with season 3 of Mattie D vs. The Evil C. Treatment is starting again. Just as soon as we figure out what that treatment will be, how we attack this time, and where it will take place. We’ll fix that in post. And in a second post. The point is, this is the season premiere. #MDvsEC

But first, How I Spent My Summer Vacation. As hoped, I crammed in a lot of travel. Visited Cleveland, enjoyed the Rock and Roll Hall of Fame, although clearly not at the same level of consciousness as some of other visitors. Saw an Indians game at Progressive-but-the-locals-still-call-it-The-Jake-Field, the comfort of the weather and the people I met lingering more than the actual game (they lost). Visited the A Christmas Story house, ate no soap and kept my tongue safe.

Returned to Western New York, one of my calm happy places in the world. Saw old friends, enjoyed more (sometimes) cool air, and watched a symphony play near the edge of one of America’s largest canyons. By near, I mean 500 feet or so away. This wasn’t some crazy Red Bull stunt.

Spent my birthday in Nashville, more friends, Ben Folds and Cake on stage.

Participated in a wild Filmland weekend with my Arkansas Cinema Society crew, where I am the token male on staff and was reminded of this often by smiling attendees. Met some amazing people, left with a few memories that would need far more words than I got in me today to properly iterate their awesomeness.

Went home to Seattle (and got in a little Portland) for a week. Still more good friends, amazing weather, a Mariners game (they lost), two Dave Matthews Band shows and one evening with Frank Turner and the Sleeping Souls.

 Finally, Chicago. Hamilton, a Cubs game (they won, I was getting paranoid), reunions with dear friends from my TV days and even one of my best friends from high school.

Let’s return to the Seattle trip as we transition to the medical side. About halfway through, I had a stomach demon. After a restless night of pain, nausea, and the other illness accoutrements, there was enough occasional light-headedness to recognize I was truly running on fumes and it was time to find a hospital. While I was staying at my boyhood home, my parents were traveling, on a mission to build orphanages for abandoned pandas in central China (Actually, they were vacationing in Kauai, but I don’t want them to feel any residual guilt).

I gathered myself the best I could and steered my rental car toward the hospital. I had been to this ER once before, when I was in 10th grade. My parents decided I was mature enough to handle a real knife and I rewarded their faith by cutting open my finger three nights later, requiring seven stitches. This was the “Just Say No” era, but I learned that night that nothing will scare you away from drugs like hearing someone having their stomach pumped to prevent an overdose while fighting against it. This happened ten feet from me, separated by a curtain with the thickness of a dryer sheet.

When I checked into the ER this time, the record from the night of the knife popped up instantly. After 29 years. The system never forgets. Happily, I got a room.

Four hours of tests and IV fluids later, it doesn’t look like anything serious outside of the cancer thing. However, they want to run one more test on some cancer fluid to rule out an infection there. This meant… paracentesis! I usually get excited about these things, but in this case, they didn’t get much fluid and poked me somewhere, because I found new and weird ways to bleed for a few days.

After accumulating very little new fluid over a year, the tumors flooded me with new fluid in the 11 days between that procedure and my CT scan in Little Rock. They refilled the amount previously removed and just kept going. There’s now a new fluid pocket under my right lung and a significant buildup in my abdomen.

The tumors have awakened. There doesn’t appear to be significant growth yet, but my doc is conferring with radiologists to make sure. Along with being painful, tumor fluid can also act as a smokescreen to hide small tumors from scans. Just the worst. Regardless, the break is over. Whether it’s back to chemo, the ever-elusive clinical trial, or another shot at radiation, treatment will start in the next few weeks. When I know, I’ll update again.

Musically, I know I did Seattle videos last time, but we’re going back once more because of this great single by Death Cab for Cutie about searching for a past you’ll never find.

Then, if you need some firing up, Hozier has returned from the woods, found Mavis Staples, and recorded this fist-pumper. Back soon with more news.

Season 2 of Camp Chemo is over. But not before a cliffhanger. You know how the season finale of some shows is longer than a usual episode? This was that.

I’ve known for my last few treatment cycles that if the latest scans showed that we were not losing significant ground to the tumors, I would likely get some time off from chemo. A measured risk for sure, but the doc wants to give my body the chance to recover and recharge.

The scans were on Thursday. Friday, no word. Saturday, no word. Sunday no word… until the results pop online about 8:00 p.m. Already apprehensive, my brain scours the radiology terminology (future Jack White album title) for anything decisive and I calculate measurements on tumor observations. After an hour, the only result is additional anxiety.

A restless night, then Monday morning arrives. Go in, get blood drawn per usual, leave the needle in for potential chemo, and head to the clinic. The nurse won’t say much but seems optimistic. Then in comes the doc, and things look stable, she says. We’re going to take a break… juuuust as soon as this one last blood test comes back and doesn’t show any abnormal readings. Don’t know why the result isn’t back yet, go find a relaxing place to hang out and we’ll call as soon as we get it.

Two hours later, the nurse calls. They’ve been informed that the lab machine that analyzes this particular blood sample broke. Could be a few hours, could be Tuesday. I’m pretty sure it wasn’t my sample that broke it. That would be a little too foreboding. They take my needle out and promise to call when they get the result. I may need to return Tuesday for chemo.

I go home and collapse into bed, emotionally frazzled from the past four days. Less than 30 minutes after I fall asleep the call comes. I get the voice mail when I re-discover consciousness two hours later.

No more chemo until the end of September.

Probably. That’s the plan, but cancer never acts like the guy with a plan. Last time, a 6-week break turned into 6 months. Obviously would love to have that happen again. However, things are different this time. These smaller, scattered tumors didn’t get the deadliest bedazzling that the liver did. We don’t know how stunned into inactivity they are. I’m essentially going on vacation and leaving the door to my house unlocked. Like I said, a measured risk. But most important things in life are, right?

You best believe I’m going to make the most of two months. Work will be easier to handle and I’ll be out there seeing concerts and visiting the homeland. Speaking of, I haven’t been to Seattle yet this year, since the family came here to bask in the humidity. Therefore, today’s music is as much about the pictures of Seattle as it is the tunes. First, back to Brandi Carlisle, playing at a rally at Seattle Center in spring Pacific Northwest conditions (re: cold).

Then, before he was world famous, Macklemore was Seattle famous and writing songs about growing up a Mariners fan for charity. Nostalgia fix engaged.

I’m writing this on night one of chemo cycle 35, so I may read a little more Punchy Brewster than usual. Apologies in advance.

This is the third cycle in the latest round of six, still no new scans planned until July. Mostly, the experience is staying routine, although I discovered another new secondary side effect. Far less gruesome than the last one.

Got a checkup at the periodontist (yes, my dentist is fancier than yours) and discovered that the dehydration has made my gums more irritable and likely to bleed. So… I get to wear dental trays for about an hour a night filled with a solution to help reverse the condition. They call them dental trays, but c’mon, we all know they’re adult retainers. No headgear this time, at least.

I’m at the 2-year mark in this cancer story. I wanted to mark the milestone, but not in a “Hey, look, I’m still here and goofy!” kind of way. Instead, I organized a Will Party. Which is just as unusual as it sounds. Working with dedicated lawyer friends, we put together the event to offer people the opportunity to make a will at a fraction of the usual costs. Most GenXers and Millenials don’t have a will. Until this party, I was among them. Even in this serious of circumstances, it’s hard to stare death in the face, especially when it ends up on paper and notarized. Some folks who initially showed excitement never made the party, which I totally get as a former fellow staller. Plenty of wills were still crafted alongside jokes and beverages. Eventually, you’ll want one too. Or at least your family will. Will! Get it? Okay, moving on.

And moving on to the end. Which means new music. Frank Turner has a new album, so you know you’re getting a track from that. This one’s about being a dependable friend in tough times. Meanwhile, my Old Man Music phase continues to strengthen as I search for new tunes, as so, so, sooooo many lyrics are predictable and unoriginal these days. You don’t get Midnight trains going anywhere or blessing rains in Africa anymore. The second tune makes fun of that while also pointing out that if you feel lonely, you are far from alone. Plus, definitely a fun video shoot. Enjoy.

The latest CT scans are back. The tumors have seen their shadow, which means six more cycles of FOLFIRI. This is pretty good news.

There are no new tumors. The batch of newer growths have stabilized. Some growing and shrinking among them, but we are talking millimeters. Within the 3D world of my abdomen, this is within the margin of error for shifting/measuring. Back in Liverton, the Death Star has shrunk slightly after months of not doing anything at all. Probably just a stunt, as Season 2 of Camp Chemo has kept the focus elsewhere. But positive liver developments are always welcome.

There were some momentary hopes for a break, but I’ve been handling the FOLFIRI so well, that I don’t get one. Yes, that sounds a little backwards, what it means is that the lack of toxicity issues allows me to keep punching away. The first of those new cycles has begun, setting a new standard of 17 consecutive treatments over the past 8 months. The first time through was 16, paired with that sweet, sweet Yttrium radiation. Odd to see how a body that can develop such a gnarly form of cancer can then sustain the fight against it this long.

Here’s an ugly part of the side effects. Something I’ve referred to as “secondary side effects” in conversations among polite company. Venture forward at your own risk.

The biggest side effect of FOLFIRI for me has always been the dehydration. Being that dry of a husk at times can leave you vulnerable to non-cancer issues. In my case, fissures at the back end of my GI system. I literally tore myself a new one at the start of the year. This was a new level of pain in my life, as some of those nerve endings run right up to the base of the spine, it turns out. This led to the addition of another great doc to the army. I call him my ProctoOnco, which makes him sound like a mystical Latin American ruin rather than, you know, a butt surgeon.

There is no easy fix for such things. Recovery is slow, so the focus was on pain mitigation. Which helped some, but improvement seemed even slower than expected over the next few months. A follow-up visit revealed why and led to surgery a few days later. I developed two infected abscesses, and one of them, in the doc’s words, had “grown tendrils.” Essentially, the plot of Alien was playing out at my back door. Surgical recovery, while no picnic, has been a (tender) walk in the park compared to before. It’s a saga they don’t mention in the voluminous tome of chemo effects and often a bit embarrassing. Which means you just work to laugh at it that much more.

In much happier news, I managed to travel to Springfield, Missouri this past week to see and meet one of my comedy role models, Weird Al Yankovic. For nearly four decades, he’s crafted parodies and musical comedy with a level of quality and detail that a lot of people play off as merely “goofy.” Two generations of smart, offbeat kids like I was have found a harbor in his work. And I’m happy to report, he’s a genuinely good guy. And he’s still making music. Like this polka version of the Hamilton soundtrack. Which is extra great, because Lin-Manuel Miranda was one of those smart, offbeat kids who has admired Al for decades. If you’re not familiar with Hamilton, then watch this video instead and explain to me why it’s not required curriculum for all American high schools.

Finally, Papa D turned 73 yesterday, about sixth months after being cracked open like a lobster to have his heart rewired. In a surprise to no one, he’s going to try for marathon #403 this weekend.

So, as we haven’t had a good fight song for a while, here’s some empowering fire via Ms. Bishop Briggs for us both. The next three months of treatment will be very similar to the last three, but I’ll find excuses to post again somewhere in there. May you be laughing and healthy until then.

Right now, I am slow-dripping my way through my 30th chemo treatment in under two years. This is a weird milestone for so many reasons.

1)      I never thought I’d be in a position to need 30 chemo treatments.

2)      There was definitely no assurance that I would survive to 30 chemo treatments.

3)      I’ve never had 30 of anything else medical, outside of physicals and teeth cleanings.

4)      The same body that helped create my cancer has also helped me pull strongly through all 30.

That last one is the weirdest. It’s like a bully beating you up at school, then immediately offering you a hand and saying “let me teach you how to fight now, but I may find new ways to beat you up later.”

Outside of the benchmark, things have been unusually routine. Haven’t missed a treatment, will get new scans in April after treatment #32. Side effects remain relatively predictable. I saw where some cancer patients call the chemo ball a chemo grenade, and I will now never call it anything else. #ChemoGrenade

Having a more reliable schedule means I now see more regulars, by which I mean people who are on the same schedule at Camp Chemo. There’s a woman about my age I talked to and shared tips with when she arrived for her first chemo day. Her and her mom now LOVE finding me as she fights. There’s a slightly older, clearly blue-collar country boy, not a talker, but always gives that knowing nod and squint of comrades in arms. And an older woman who quietly giggles when me and the infusion nurses give each other a hard time. Other faces too. All with their stories, many of them surely more interesting than mine. But for now, all working to stick around to tell them.

In related news, I Googled myself for the first time in awhile (Oh shut up, you do it too), and humbly discovered I was on a list of good cancer reads on cholangiocarcinoma.org. If you want to other viewpoints on this dark and stormy battle, check out the list.

And even they mentioned the music, so we’re doubling up on the recent discoveries again. First, an amthem from Seattle chanteuse Brandi Carlisle about pretty much everything right now. 

And then, a pensive, introspective look at… I’m just kidding. It’s a great rock song from Anderson East with a horn section and a handclap line that keep my head bobbin’ along. Even for me, the lyrics don’t matter once in awhile.

This is something you won’t hear often, but I am encountering a step backward in medical technology, and I welcome it. More on that later, shouldn’t bury the lede.

The first scan results in three months returned with mixed news. Some of the small tumors attached to lymph nodes and one bastard in a lung are still growing. Still small, but still growing. The doc is certain that the growth would be much worse without the FOLFIRI, which is likely already slowing said growth. So we plow forward with another three months of FOLFIRI. And enough with the irony, hipster cancer, you started big in the liver of a light drinker, now you just need to drop one little tumor in a lung that has never inhaled first-hand anything. We get it, already.

The better news is in Liverton. The OG tumors continue to not grow, and more importantly, seem to have nearly or completely halted production of their evil fluids that spread the cells throughout the body and created the smaller, more recent tumors. This I expected, as fluid buildup seemed to slow and remain more bearable in recent months. Hopefully the loss of this weapon reinforces my ongoing battle to the south.

 My first of the next six FOLFIRI treatments on Monday came with a surprise. No more pumps to take home. They’ve reverted to an older technology that is simpler, electronics-free, and surely less expensive. These are rubber infusers, or infusion balls, I’m not sure of the most used name for them, since all searches for the terms lead you to tea sites. Everything has to sound so fancy these days, ya bougie sippers. They were used for years, but then there was apparently a manufacturer production issue and pumps came into vogue. Not anymore.

This ball ‘o drugs works on a positive pressure system, feeding you the drug with tubing, valves and filters. That’s it. This makes things smaller, easier to carry around, no battery changes needed, and no more constant clicking and whirring of the pump that I shoved deep under my blankets at night to muffle like I was Edgar Allan Chemo. In a romantic twist, this pressure system works best when the tubing and ball are close to your skin to utilize your body warmth. How intimate. So now, at the house, I just carry around the ball in my sweatpants pocket with the tubing under my shirt. Adorable.

It’s a bladder of drugs inside a rubber ball that deflates slowly over 46 hours. I have to monitor this deflation to make sure it’s diffusing properly, as there are no longer mechanical alarm bells to tell me when it’s not and keep me on task. Proper deflation = success, the Tom Brady method of cancer treatment. Don’t worry, the infamous Red Bag of Chemage is not retired after two months, it’s just relegated to use when I go out into the world while hooked up.

Discovered a new side effect that I’ve encountered only once to the entertainment of my friends. Chemo hiccups. Not a good taste, not terribly bad to feel, potentially awkward to address. “Excuse me, I am a cancer patient currently receiving chemotherapy which has caused hiccups, would you mind scaring me suddenly?” Luckily, I was with my improv family at the time, none of whom would hesitate a second to terrify me on demand. But I stuck with the nose holding/water drinking method, which worked.

That’s it for now, probably won’t be back for a few cycles unless something notable or funny happens. In that vein, a fellow patient yesterday had an accent I couldn’t place, so I asked her. She said it was Israeli filtered through 25 years of living in America. I complimented her on keeping any of it intact after so long, and she said “When I get to the gates of Heaven, I want them to know right away that I speak Hebrew.” Well played, madam.

Musically, we’re going British rather than Jewish. Finally got Rag ‘n Bone Man’s album and realize many of you may still not know him on this side of the Pond. Soulful dude. Enjoy. And please only scare cancer patients when asked.

It’s been two chemo cycles since my last entry. Feels like there should be more, because there should be more. Getting my blood and platelet levels to line up at the right time becomes more and more of a cat-herding situation each cycle. We’ve asked a lot of my marrow, so I can’t get too upset, but it has meant treatment delays. That doesn’t mean things haven’t been eventful.

For instance, I went to the Emergency Room for the first time in nearly three decades. They call it the Emergency Department now, which makes sense, since it’s a whole bunch of rooms. There may be one particularly important Emergency Room (Oh Hai, Patient), but I was not in that one. If not for the pesky cancer, there would have been no visit at all. That’s not a luxury I get these days.

It was either a 24-hour stomach virus or food poisoning. Give my unexotic food palate, the former was more likely. Whatever the source, it brought wrath-of-god-level expulsion for a full night. At one point on my bathroom floor, I hallucinated Linda Blair from The Exorcist floating above me, giving a slow clap of respect. Usually, this would be something to ride out with ginger ale and ice chips, but this event left no doubt by dawn that a hospital visit was in the cards. Apparently, Tuesday morning is an ideal time to go the ED, as there were very few patients, and otherwise idle techs fought over me (at least in my head they did) to get all the necessary tests run. Four hours and a few bags of fluids later, I was back home and mumbling vengeance against the unseen foe. Unsurprising, this delayed treatment. Like having a tornado hit while still cleaning up from an earthquake.

Once I get to Camp Chemo, things progress smoothly. The FOLFIRI dehydration remains strong and arid, leading to some other secondary symptoms I won’t get into today. On the flip side, nausea is off the radar most of the time, there’s definitely less of it to deal with than at any point during 20 Gemzar/Cisplatin treatments. Still two more cycles (I think) before the next scans cautious optimism remains the Soup of the Day.

Enough medical jargon, BAG UPDATE. I searched online for an appropriately unique and offbeat bag to hold my 46-hour home treatments. You can get fanny packs customized for anything these days, although 90% of the business seems directed toward sassy bridesmaids. Nothing really stood out to me, and I turned in desperation to wild lands unknown: Etsy. There, I found my bag. That’s not technically correct, since Etsy isn’t a physical place. But Bulgaria sure is.

To call Cold War Bulgaria an uncertain place is understatement. At one time or another, they were on good terms and bad terms with every player on the map, it seems. For this story’s purpose, the important event is that at some point in the 1970s, the Soviets stocked a warehouse near Sofia with a bunch of military sundries. And then… nothing. Decades passed, the U.S.S.R. fell apart, the warehouse was abandoned. Eventually, the warehouse’s contents sold at auction, an entrepreneur bought some lots, put them on the web, and that’s how I’ve ended up with a Soviet messenger bag for my chemo after weeks of postal limbo and odd routing.

I like this bag’s history. Created for a darker purpose, forgotten for decades, then rediscovered and repurposed for a more noble role. A role that led to its presence at a Ugly Christmas Sweater Karaoke Party. The Reds never saw that coming.

 Last year, in the world of weird self-challenges that this journey has helped me develop, I did stand-up comedy the same day I had chemotherapy. This time, I went and sang karaoke WHILE getting chemotherapy. As the pump pushed FOLFIRI through my bloodstream, I pumped out some fair-to-middlin’ Robert Earl Keen. It was fun, the crowd was kind, and another item was checked off a list that doesn’t exist until I think of new creations for it.

 And the creation will continue. For the final song of the year, a band that provided a driving beat when needed. We’re almost 20 months into this journey and we can’t stop now.

Cycle 1 of FOLFIRI is complete. To follow my treatment schedule to the letter would involve getting chemo on Thanksgiving and I’m not subjecting anyone to that. Instead, Cycle 2 will start on Cyber Monday. That’s after I observe Small Tumor Sunday. Which is wishful thinking, but hey, it’s the holidays.

Overall, the last two weeks have been bearable. Many of the scariest potential side effects didn’t appear. Some nausea, not as much as the last drug cocktail. My hair in thinning again, still have everyone on standby for a dome reveal/photo shoot if full alopecia manifests. The idea still doesn’t sit well (Sitwell) with me, but I’m becoming more accepting of the possibility.

The biggest side effect to date is the dryness. So, so dry. Dry to the point that my fingertips are in a constant state of semi-prune, like I’ve been in the pool. It got to the point where I couldn’t unlock my phone, as it refused to believe that I was putting a fingerprint on the reader and not an actual prune. This is way better than the other potential fingertip malady of neuropathy, hence my joking about it without much alarm.

(Side note: Already, spellcheck wanted to make “alopecia” into “special” and “neuropathy” into “nephropathy,” the latter of which is kidney failure, so I’m not diggin’ on the negative attitude here.)

The fanny pack was in fact just that, a plain black fanny pack carrying a small pump and a bag ‘o chemo. The pump whirs and clicks every 20 seconds or so, but a white noise app is able to drown that out well enough for sleep. The awareness of carrying around something attached to your bloodstream for 46 hours takes some getting used to and makes the time seem to pass slower. I realize that many people have more cumbersome medical devices attached to them for far longer, but I’m a rookie at this stuff. For the first round, I just didn’t leave the house much.

Plenty of swagification offers (Offered spellcheck replacement: “sanctification,” nice!) and supplies have been given, but so far, I’m not naming or decorating anything. I found a very obscure and odd bag online to potentially use in lieu of the fanny pack, we will see how that goes once it arrives. From Eastern Europe. Yep, it’ll be weird.

That’s really it for now. The latest long-awaited paracentesis (“parenthesis”) removed another 3+ liters of tumor fluid off my abdomen, offering about 8 pounds of relief for now.  Work and improv continue relatively unabated.

Tune time. I don’t know how I’ve had the blog this long without including David Gray, one of my favorite voices. His slower pace seems fitting to the holiday bustle and since we’re entering the holidays, how about a 2-for-1. The first song he ever wrote, which remains my favorite, along with a great Randy Newman cover. Next post in December, probably.

It’s been quite the week.

Thursday started with the new CT scans and ended with me on the phone with the doc learning that the chemo tag team of Gemzar and Cisplatin wasn’t working anymore. The cancer cells finally reproduced and mutated enough to outsmart them. Not the most surprising news in this medical game of chess, but still unsettling and scary. 20 doses over 17 months had helped beat back the Hipster, but now this line of chemo is SO last year.

So...now what? Options were spelled out, and for a second time, there was a clinical trial in the mix. And this time, it was back home in Seattle, taking two different types of oral chemo that have shown results for some cancers and trying them together. Talked to them about the study Friday, was sent 17 pages of homework to review over the weekend, then another, longer phone call on Monday. Oh, you think having cancer exempts you from homework? Think again. You can never hide from homework.

Tuesday was the big huddle at the clinic. We decided… nah. Good study, good people (and this is me saying this about the University of Washington, keep in mind), but it came down to time. It would be too many months in an early-stage trial to know if it was truly proving effective or not.

Instead, we’re opening a second line of chemo. New drug, new routine, new potential for all kinds of weird side effects. The drug is called FOLFIRI, originally developed for colorectal cancers, then migrating north over time for use with other GI cancers, like mine. And while it’s another kind of chemo, a lot will be different.

The biggest difference is the delivery system. Instead of three hours in an infusion lab twice every three weeks, I’ll spend half that much time in the chair once every two weeks. Then there’s the Fanny Pack. It’s being called a Fanny Pack, but you can guaran-damn-tee that I’ll have a different name for it once I get to know it. The device soon-to-be-formerly-known-as the Fanny Pack gets hooked up to the port in my chest and slow-drips drugs into me over two days. It will be interesting to see what this means for things like going out into the world and sleeping at night. The next update will focus a lot on this, for certain.

There is also no “usual” schedule for side effects this time. No days when you are more likely to feel nauseous or have GI issues than any other. A little randomness to spice things up. Again, odds are I lose my hair, but those were the odds last time, too. Hopefully, by the power of Steve Harrington, I’ll keep it again. If not, there will be photos. So many photos.

And that’s where things stand today. Monday is the day one of the chemo sequel, which will likely run for 5 cycles. Having a strategy is always comforting, especially after doing all the homework and having whatever possible confidence that it’s the best path to take next. See, homework does pay off. Stay in school, kids. Now we attack anew. The game is afoot.

Our song this time is just a great tune. Little-known band that will hopefully be known better soon. Girl with a great voice, song that will get you swaying. All we want sometimes… is a shot.

Six lukewarm takes on Stranger Things, Season 2.

Actually five takes, then the reason this became a bonus blog post.

Spoiler-free. For the show, I mean. Most of my Season 2 isn’t written yet.

1. Season 2 is not better than Season 1. It is not worse than Season 1. It is a continuation, which is the best thing it could be. It avoids many of the traps you might see if it had tried to be a sequel. Stakes are raised, but not through too many new villains or going to absurd levels. Characters that were already great get more development and depth, to the benefit of the story.

2. The influences from 80’s film and TV are still there for sure, but not as blatant, with maybe one exception involving a film series I won’t mention for plot reasons.

3. The new casting is spot-on, particularly Reiser, Astin, and Gelman. Astin even sneaks in a Goonies joke, which I’m fine with because we’re still a year away from the movie becoming part of the Hawkins universe. Man, do I hope we see some Goonies influence on Season 3.

4. The pacing remains one of the best things about the show for me. The confidence of the slow build means payoffs have stronger impacts when they land. The Duffers throw you a curveball in the first two minutes of the season, and you know it’ll link back in when the time is right, even if it’s not for awhile. With the main universe established and a year between seasons, they also don’t have to always stay linear with their storytelling. When they don’t, it’s not an attempt to trick you or make you solve a riddle, it’s to service story and characters, which, for me, is the best use of it.

5. The music. Always important in a production, and once again, it slays. Both the tunes from the 80s and especially the original score, which assists the higher stakes without being bombastic. And, in true Duffer fashion, the final song of the season has multiple references, one more obvious, one more subtle and even funny.

6. Most of you read this blog for cancer updates and not pop-culture reviews, so you may not know that Stranger Things is a sci-fi/horror series on Netflix set in 1983 and now 1984, Hawkins is the fictional city where it is set, and The Duffers are two brothers who created the fictional world.

I love this series for its execution and the childhood buttons it pushes for me, but its timing has had special meaning for me in my cancer fight. The show first appeared pretty much out of nowhere when I was at the peak of the chemo/radiation two-front war against my Hipster Cancer the first time around. It was something I needed amid everything else, even though I didn’t know that until I found it.

I talked about it briefly and linked a song that I thought was the best used in the series. That song later inspired a lip-sync battle performance paired with some homemade Stranger Things puppetry from the incomparable Katie Campbell.

https://www.facebook.com/djcrofford/videos/10154605652298552/

Season 2 arrived just hours after I learned from my latest CT scans that the new tumors in my lymph nodes aren’t reacting to the chemo the way that the ones in my liver did. My Season 2 threw in a twist and I’ve spent the last 48 hours exploring options and thinking about what comes next. And there are options. I’ll post about them this next week after the decisions are made. My Season 2 is a continuation of the original story, but the plot’s changing. That’s been stressful, but in the middle of it, I got nine cathartic hours of Stranger Things. And I thank everyone who helped make that happen.

More news in a few days.

Yeah, you still get a song. It’s fun and from the show, even though it’s from the 70s. And in the show, it involves the fantastic David Harbour dancing poorly. A man after my own heart.

After three rejections, I finally got my second chemo treatment of season two, cycle one at the end of September. Then, after a scheduled week off, my blood work nailed its test on the first try, and I’m now resting after treatment one of cycle two. We will finish cycle two, get some fresh CT scans (locally sourced, they smell amazing), and see where we go from there.

Even with a sterling lab report, my blood has shown slightly high ammonia levels for the first time. My kidneys continue to be the unsung heroes of this ordeal, so there’s nothing wrong there. It should be solvable by medications already in use.

As a safeguard in the meantime, friends will be monitoring my interactions to make sure I’m not unconsciously derpier than usual, as that can be a side effect of heightened ammonia. I wish them the best of luck to notice any discernible difference from my general goofiness. However, until those levels are fully back in range, you can be sure I’ll use it as an excuse for forgetting meetings, days of the week, faces, names, parking spaces, and passwords. I know a good scapegoat when part of me is one.

The good lab results came even after a sudden overnight trip to D.C. three days after my last treatment. Many have asked about it, so this… is the CNN story.

It all happened fast and here’s the shortest version. I made a new fellow Stage 4 friend on Twitter on a Wednesday. Friday, CNN asked her to be part of their live audience for a health-care debate Monday. She had chemo coming on Monday, her docs said no and she offered up other Stage 4 friends as replacements, including me. After clearing it with my doc, I e-mailed the producer. She recognized me (by name, at least) from my previous job. I sent some potential questions on Saturday and got a response on Sunday asking me to fly up to their DC studio on Monday. I did.

When you get there, you are brought into their regular studio with has been combined with The Situation Room to give the audience a place to sit. I’m seated on the aisle and given a copy of my edited (for brevity) question that producers chose from the ones I submitted. We are all clearly told that not everyone will get a chance to ask their question, but be ready at any point. As things are about to start, the audience coordinator leans over to me and says I’m going second and begs me to bring my written question to the microphone even though I don’t need a script to talk about all of this. My foot remains out of my mouth with the camera comes on, I ask the question, and am directed back to receive my answers from four U.S. senators. And that was it. Even with TV in my background, it was pretty surreal. If you want more detail or to hear me delve into the politics of health care, watch starting at about 18:30 in this video.

http://www.arkansasmatters.com/news/local-news/capitol-view-three-perspectives-on-health-care-debate/822291353

Otherwise, I’ve kept working and kept up with friends, had a lot of fun, missed a few opportunities, but making it work overall. Spent an incredible Saturday evening at the Hot Springs Documentary Film Festival with Richard Turner, the most jaw-dropping playing-card mechanic I’ve ever seen. I watched him perform from a few feet away and couldn’t figure him out. His documentary hits limited theaters and iTunes on October 20.

Finally, when the world at large looks rough, take solace in knowing that hard work and determination still pays off sometimes. I give you my friend Ashley McBryde. A girl from a tiny Arkansas town who spent years playing every tiny dive bar and pizza parlor and even an improv show that would have her until the right people heard her music and gave her a shot.That eventually led to this performance that needs no further explanation. I’ll post again after I have CT results.

Ginger, get the Kleenex.

Always something new at Camp Chemo. This year, it turns out, I forgot to pack my platelets.

Went back for my second treatment on Friday and was denied. Platelets, white blood cells, and potassium levels were all too low. So I was issued potassium pills, told to rest up over the weekend, then return this morning to try again. Upon returning, we discovered that my potassium and white blood cells had rallied like champs. But them platelets just kept falling. Not low enough to warrant a transfusion or anything, just low enough to prevent treatment again. There’s not much you can do to directly stimulate your bone marrow to produce more platelets, so I’ll be sticking with a few foods that don’t hurt (carrots, milk, lean white meat) and light exercise.

The most interesting thing today was the woman sitting next to me in the infusion waiting room. She’s younger than me, in better physical shape, and was equally anxious to get her chemo. Her reason, however, was very different. Small doses of targeted chemo are part of her post-surgical regimen after, this past February, receiving a double-lung transplant.

Seven months ago, she needed an oxygen tank to get around while she suffered from an auto-immune disease that deteriorated her lungs. Today, I had no doubt she could leave the infusion lab and immediately complete a 5K. And I say all that to say this.

With the creation of Patriot Day, 9/11 commemorations are supposed to be made with service as well as remembrance. If you’re looking for a simple, free, and invaluable way to help other people, become an organ donor. It is very easy to do, but too many people are dissuaded by all kinds of myths and misconceptions. Here are many of them and the reasons they’re not true.

Cancer’s terrible, but people also die everyday waiting for organs. The anticipation for test results or my chemo is peanuts compared to that kind of agony. So give it a thought. If you’re already one, thanks.

Musically, I embrace irony again with this number from Americana great (and Hendrix grad) Hayes Carll. My heart is fine, by the way, hope yours is too. The next update will come after some successful treatments.

We got farther along in the courtship of a clinical trial than we have to yet. Even had a first date scheduled. But once again, in the end, the chemistry just wasn’t right. Hipster Cancer has far too high of standards, the elitist. For me, in this scenario, I’m not one to wait around. Within 40 hours of finding out that the latest trial was a no-go, I was back in the chemo chair.

I’ve been wondering for months what it would be like inevitably going back to chemo. The best analogy I can muster is comparing it to a second year of camp. You know the layout and most of the counselors. You see the first-timers going through what you once did and the long-timers with a ton of stories about Camp Infusion. Once you settle in, get hooked up, and the IVs start dripping, it really does become comfortable. I slept more this time than any previous treatment I can remember to the sounds of the whirring pumps. Granted, being freshly inundated with all the good drugs for the first time since December likely contributed.

Plenty of things are different in Season 2. Overall, I’m much healthier than I was at the start of last year’s chemo. There’s the knowledge, with the ever-present possibility of a new surprise or two, of what the next week will be like. The active tumors are in a different location, which means some uncertainty about where pain and discomfort will manifest. This run of chemo will be shorter, likely 3-4 cycles rather than the 8 last year. Technically I maxed out at 8 for this particular cocktail, but the mild nature of the side effects at the time paired with nine months off means we’ll dance with the one who brought us a bit longer.

I’m on Fridays for this cycle before returning to my regular Tuesday slot. Which puts me at the start of potential peak nausea today, but nothing bad so far. Even pushed myself to do some things both nights so far during a weekend that would be classified unusual by all standards, even without chemo. Testing my limits (within reason) will always remain part of this fight for me.

Speaking of, you may remember a spring post that included the song Ain’t No Man by The Avett Brothers and spoke of the involvement I hoped the song would have with my coming months. Four days after my latest diagnosis, I was able to perform it at the Lip-Sync Battle for Make-A-Wish at Robinson Auditorium, alongside my friends from the Big Damn Horns. Not knowing what my status would be months in advance, I also conspired with my comedy friends to make a video that could stand alone in my absence. It ended up playing in the background of the live performance. Enjoy this labor of love.

Don’t worry, there’s still new music, too. Someday this will hopefully become a music blog with the occasional update of remitted cancer instead of the other way around. Enjoy a song of resilience with an EDM beat. I will report back next chemo cycle.

After a break that was supposed to be 6 weeks and lasted almost 9 months, my cancer has returned. Before I get into details, I need to back up and discuss some definitions.

I realize I’ve gone full Voldemort and never actually spoken my cancer’s name on here. Nicknames, sure, but it’s time to get technical. Because now, after 15 months, I’m finally able to spell it right.

My cancer is called Intrahepatic Cholagiocarcinoma. I’m down with ICC. As previously mentioned, it originated in my bile ducts and took up residence in my liver. I have cancer in my liver, so there’s no problem saying that it’s liver cancer. But since it actually started its nasty birth mutations in my bile ducts, it’s not Liver Cancer. This is a level of distinctions generally saved for the doctors, researchers, and people that fuss over language for fun (all great groups of people, by the way), but it helps in explaining the new developments.

ICC has now spawned eight tiny tumors in lymph nodes near my liver and elsewhere in my abdomen. This is cancer spreading. This is not happy news. But it is also not a new cancer. I don’t now have Liver Cancer and Lymphoma. It’s the same cancer, the action has just moved slightly south. It has traded the big house in Liverton for smaller bungalows throughout Abdoeman (pronounced like Imboden).

The three tumors in my liver? Still there. But they’ve stopped progressing again. The small amount of re-growth we saw in the spring has ceased for now. So we keep an eye on them, but the main action in Season 2 has shifted locales.

The 8 new tumors are very small, all of them less than 20mm in mass. All 8 combined are smaller than the Death Star in my liver. But small is still dangerous, as anyone who has ever angered a chihuahua can tell you. So, back to chemo next week! Or so I thought…

The morning consisted of getting the new diagnosis and coping with that. Then, in the afternoon, I got a call back from a cancer alliance about a new clinical trial. As luck would have it, I might well qualify for this trial if my next shot at chemo doesn’t slow the new progression. So, back to chemo next week! Then, if that doesn’t work, new science! Or so I thought…

Less than 30 minutes after that call, my oncologist calls. She just got off the phone with the same people, and after more fully explaining my situation, they realized that I might well qualify for this new clinical trial immediately. Nothing is certain yet, however, so right now, at least for a few days, we wait. And there’s our cliffhanger. Tuesday was a rollercoaster of emotions. Or a glass case.

Last year, I started this blog while getting ready for my first round of chemo, having no idea what the treatment would be like or how my body would react. This time, I know much more about the treatment and how my body would likely react. But now that may or may not even be the treatment. I won’t say much about the clinical trial until I know more, and even then, there’s always a Secret Squirrel component to them. Count on more frequent updates in the coming weeks, even if some of them are vague at times.

I was ready for this to be a boring entry in which I would get to talk a lot about the solar eclipse. It was not boring. So, in short, the eclipse was amazing. Saw it in totality in rural Missouri. Here’s one spoiler, the potential cutting-edge case study will not occur in rural Missouri.

Our song is one that’s been bouncing around my head for a few months. Like a lot of 20-something acts, they’ve got a song pondering about the passage of time and life. This one just happens to be very catchy. Enjoy it, as I know that while you all care about my updates, some may actually be more excited to get new music. Either way, stay tuned.