#decample

[decample-blog]

All Quiet on the ChestBurn Front

Aaaaand... we're back.

Status update:

I still have cancer.

It is still Stage 4.

There are still three tumors in my liver.

Cancer cells still meander around my body.

However.

In the six weeks since my last oncology visit, there have been no treatments, no meds, the gate has stood unguarded. And nothing has changed. The latest CT shows that all three tumors are essentially the same size they were in December (one grew a tiny fraction, two shrunk a tiny fraction, which could just be variations in measurement). Why are things so stable? There are no definitive answers. Maybe we've beaten it into submission (not remission), maybe it's regrouping for another assault, maybe it's been distracted by binge-watching The Crown. Since cancer is already evil, I just assume it stole my Netflix password, too.

This is a major relief and has warranted me an extended recess. We will now try seven more weeks without chemo. Again, this could be interrupted by symptoms re-emerging, or an attractive case study opening up somewhere out there (How YOU doin’, case study?). Otherwise, I can keep being relatively normal. However close to normal I get, anyway.

As expected, most of my break was pretty low-key. With some restrictions temporarily lifted, I've indulged in hamburgers and had a drink on New Year's Eve and a few other choice occasions. Without the nausea, I finally tried out those VR goggles that have been sitting around since summer. Not bad, but I think I'm already a generation behind on the tech after just six months. Popcorn still doesn't agree with me, which is a major blow to my movie-watching habits, but I've watched plenty of films nonetheless. And yeah, I'm going to keep trying to eat it. Also, I'm almost back to regular-length workouts at the gym, even if not as frequently as I would like.

In the next seven weeks, I'll take my first real road trip in awhile, since stomach pain during treatment kept me from being able to sit for hours at a time. I want to see more live music, catch up with more friends, and will definitely take time to root against the Patriots. I'll get to work more since more work is becoming available. I'll also apparently be saying the word “more” a lot.

As for more (see?) chemo, it's out there in the future somewhere. Don't know when, but I'm reminding myself that even a longer break is still a temporary one. But it's still a break, so I'm going to keep enjoying it. Also a goal: getting karaoke back into the routine. This was confirmed when the Rockefeller Institute's pianist was playing this song as we left today. Embrace the 80's-ness. And if I don't update again for awhile, things are still stable. Hopefully I will be, too.

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Breaking Good

A cease-fire has been declared in my war on cancer. A very tenuous one, but it still means a six-week break. Unless it doesn't. But it probably does.

I'll explain. The latest CT scans showed that The Three Tumors (a terrible music act) haven't shrunk as much since October, but they have stayed put, appearing relatively stable and quiet thanks to the chemo. With these results, we've made the call to take six weeks off from treatment. This will give time for my body to flush out more toxicity (call it a chemo cleanse), give it a break from processing new doses of drugs and let me get more energy and the right kind of body mass back. The end of January will then bring more tests and a re-assessment of where things stand.

While this is great news overall, I have to stay aware that the beast is now unguarded. It may just stay there stunned and dormant, it may regain some strength and get aggressive again. If my body starts showing signs of the latter, the break is cut short and it's back to treatment. Otherwise, it's a nice sabbatical.

With my parents in town, I took them through the Rockefeller Cancer Institute and introduced them to some of the doctors and nurses who have been in the trenches with me. The chemo nurses were really glad that I told them about the upcoming break for a reason I hadn't considered. If you're getting chemo regularly, and then don't show up for 4-6 weeks, they start to get worried or just sad. And I can only imagine how often this happens.

I don't have any grand plans for the time off, just pursuing that normalcy I've sought since day 1. Hopefully less napping and more getting out and about. And, of course, continued monitoring for the emergence of new superpowers. I will be taking a break from this blog, because there hopefully won't be anything to update. Still, as ever, if you've got questions, find me at [email protected].

Surviving 2016 after the initial diagnosis is a victory. Let's be honest, surviving 2016 in general is a victory. But there are still many battles ahead. In the war metaphor, this is not vanquishing the enemy, but rather sneaking across the lines at night to play cards and relax. However, having a very unknown tumor could also mean things stay positive longer than anticipated too, so optimism remains heavily in play. Here’s hoping the beast stays tamed. And the zen master said... we'll see.

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Under Pressure

This round of CT results came back much quicker than last time, so let's get right to it.

We're keeping the pressure up on the tumors. They're still shrinking, albeit at a slower rate than before. This is not unusual. There are also no signs of spreading or new tumors.

I played around with the numbers in the scans because...science. Not because I'm a numbers nerd. No, you're the nerd. Shut up. I'm going outside for recess to play tether ball (Ow, my face).

At this point, there are three tumors being tracked. The biggest, nastiest one we'll call the Death Star. The two smaller satellite tumors we'll call the Blech Star and the Meh Star. Those are disgruntled hipster noises, if you didn’t know.

The Death Star sits on both lobes of my liver and was the primary target of the microbead radiation treatments (a.k.a. the Deadliest Bedazzling) this summer. While it is by far the biggest and nastiest, it has also shrunk the most. It's now roughly 35% of its original size, meaning nearly 2/3 of the Death Star has succumbed to positive shrinkage.

The Blech Star is the next biggest, and has actually shrunk the least of the three, remaining about 64% of its size at diagnosis. Even with that slower rate, it’s less than half the size of the Death Star.

The Meh Star has been the smallest from the outset and has shrunk by half. These calculations aren't as sciencey as I'd like, but the scan reports don't have all the dimensions for all the tumors. But it's clear we’re still headed in the right direction.

The other news of note in the report was also about pressure, but not the good kind. It's become evident that, while I still get nausea from the chemo, that is no longer the predominant side effect causing the most trouble day-to-day. That dishonor is now owned by fluid retention. Not just tumor fluid, but some of the large amounts pumped into me to help deliver the chemo drugs. My low albumen levels aren’t helping prevent buildup. Along with a painfully swollen abdomen, the scan showed that fluid has now spread into my pelvis. This confirms why it has become even more difficult for me to sit for any prolonged amount of time without pain. Which I'm glad to know on one level, because I worried it was all because of my stomach. It's not. Plus, I get to use the term “unwanted pelvic fluid,” maybe the least sexy cancer term I've come across yet. You're welcome, ladies. We’re working on some ideas to lower fluid levels, but my oncologist is very wary of going to the paracentesis well too many times.

As soon as I came up with the title for this entry, the song was a no-brainer. Not just because the song is iconic, but also because I seem to have a lot of friends who have had a lot of pressure to deal with of late. And above all, it's a song themed with hope. My next entry will probably be at the end of Chemo Cycle 7, which starts Tuesday. Until then, enjoy some autumn.

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You Want Answers? I Want the Truth!

I’ve been gone from here for a few weeks, but as you get deeper into treatment, things tend to fall into a pattern, with less to report. Take this as a good sign, since right now any immediate change would likely be a complication. When you can keep this complex cancer fight on a stable track, that’s a good thing.

I started Cycle 5 of chemo yesterday and all systems were go. I even raced with two other patients to see whose I.V. drip was going to finish first. I dubbed it the Arkansas Chemo Derby. I was the favorite out of the gate, but met defeat in a photo finish by a wily mare with more experience in the chair. Next time…

For now, I’m overdue to answer some more frequent questions I get from friends and well-wishers. Here we go.

“Why don’t you just get a new liver?”

There are many reasons why transplant isn’t in the discussion, at least not yet. Among them:

1. My current liver Is pretty kickass. Which is weird to say when it’s riddled with tumors, but even with those, my blood tests keep coming back in normal ranges. Which basically means that my liver is putting orange cones around the cancer and going about its business.

2. There’s no guarantee that a new liver won’t also get attacked by the cancer. While progress has been good in shrinking tumors, we still don’t know this hipster’s origin story.

3.  Liver transplant surgery has one guarantee: it will lower your quality of life for a good while. Which is a sizable risk to take when you don’t know if the cancer could go after the new organ, too. This has been enough to handle without the aftereffects of major surgery. My oncologist will be very hesitant to bring in that option unless circumstances change quite a bit.

“What’s the story with that port thing in your chest?”

Early on, docs implanted a plastic port under the skin below my right shoulder blade. It runs up into a major artery for quick delivery of medicines and easy drawing of blood. It has proven way more convenient than getting stuck for IV lines every time I go in. You can even get a prescription cream to numb the skin above the port before they access it, rendering the needle stick even less painful. I’m still not completely used to feeling it in there, but I’ve had no complications with it (which aren’t unusual).

Before the surgery, they asked if I wanted it below my right shoulder or left shoulder. It usually goes on the right side, so I asked why I’d have it on the left side. The reason? Many patients at UAMS ask for it on the left side so it won’t hinder them during hunting season. Welcome to cancer treatment in Arkansas.

“What’s the weirdest side effect you’ve experienced during treatment?”

Side effects for chemotherapy could fill a book, I know because they give you that book when you start. I’ve been fortunate enough to avoid the most terrible ones, and have sidestepped some of the odder ones, like changes in taste and smell. For me, the weirdness has been the dreams.

I’ve never been the biggest dreamer during sleep, I’ll occasionally have vivid ones but usually wake up forgetting if I’ve had any or what they contained. That has been a massive change during chemo. And let me tell you, these dreams have been sooooo… boring.

Most of the time, I’m dreaming of minutiae. Very detailed and very procedural. Nothing exciting, no crazy fantasies, usually stuff that just feels like work. And much like my pre-chemo dreams, usually when anything interesting starts to happen, that’s when I wake up. I’m fighting cancer, and my unconscious brain thinks the best distraction while I sleep is the dream equivalent of paperwork. I am one wild and crazy guy.

One nice thing. In my dreams, I’m never conscious of having cancer. Thanks for that, brain. Even if I’d rather be dreaming of what we should be doing every day, trying to take over the world.

“No, seriously, when will you be done with chemo?”

Still up in the air. Being on Cycle 5 means I’ve past the halfway possible maximum with the current chemo regimen. Can’t go past Cycle 8. After this cycle or during the next one, we’ll get a fresh set of scans to measure progress. I could get a break, we could look to other drug cocktails to keep going. Stay tuned for updates. No immediate additional radiation treatments scheduled, but more deadly bedazzling isn’t out of the question either.

That’s it for now. Like most in Arkansas, I am eagerly awaiting fall weather. And thank you to everyone for your support at last weekend’s Lip Sync Battle to benefit the American Cancer Society. Apologies to everyone I made cry. Well, to almost everyone.

This entry’s music: A song I’ve just really liked for about a year now. True, it kind of suggests that this blog is not the best idea. To be fair, it also suggests that being a touring rock band is not the best idea. Enjoy.

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Let’s Get Small

My surreal cancer experience continues, this time for the better.

The anticipated CT scans happened Friday. For the first time, I had to drink oral contrast in addition to IV contrast, both of which help enhance the resolution of the scans. It's basically a big gulp of chemicals, water and Crystal Light. And everyone knows you only give Crystal Light to someone you don't like. I didn't take it personally, but while chugging that down, I kept thinking, this had better be worth it...

And it was. In three months, my tumors have shrunk by nearly 50%. The doc calls that rate “almost unheard of” for this category of carcinoma. I don't know if the other five Americans with this exact cancer saw similar results, but everyone here seems impressed. They credit the ability to fight the two-front war on a relatively young and healthy patient.

Hipster cancer lives on, but has seen his manbun clipped off.

The fight remains far from over. Two more cycles of chemo planned before additional scans with no immediate plans for more radiation, as the current Yttrium beads keep simmering in Livertown.

With the good news came the sobering reminder of long-term prospects. This type of cancer almost never goes away completely, even when it goes into remission. The strategy remains the continued pounding of the tumors into remission, then keeping an eye on things while we wait for new research. Pushing all my chips in on science, which has a pretty good track record with cancer. And with extending life in general. May also consider becoming a RoboCop if necessary.

No treatments this week, this time it's my platelets underperforming. Not much to do there except rest and try again next time. Until then, it's been good to (cautiously) share some good news for a change. This obviously requires an uplifting song for this week, so take us home, Youngblood Hawke.

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Mr. Stomach Robot

My white blood cells bounced up off the mat like Rocky this week, surging back into the normal range and allowing a return to chemo. Tuesday is my new regular chemo day, which seemed like a shrug-worthy change until you realize that Tuesdays come with free massages! The volunteers at the Institute are great, always willing to help you find where you're going, find spiritual comfort, find a sugar fix, or, in my case, find that crick in your neck.

Even with the white-cell rebound, my oncologist wanted to pump it up still more toward the center of the normal range. This involved a little robot device that sits on your belly and, on a time-release, stimulates your marrow to increase production, must like the previous booster shots I received.

This is the first treatment I've ever received that comes with an instructional video, with lots of safety instructions and every possible side effect you can dream about. Two things out of the seven-ish minute video stuck with me. One, if your spleen explodes, contact a medical professional. Check. Two, do not hug a microwave while wearing this device. Check. The latter, of course, is recited as a warning because someone caused it to be. It doesn't actually say don't hug a microwave, but it does say to remain more than four inches away from one. As a bachelor, my microwave is a very important appliance. I can never remember, regardless of my level of excitement for what rotated within, ever pressing myself right up to the microwave as the seconds ticked by. The only scenario I could imagine would be a patient deciding that, since this cancer has me in such a weakened state, I'll get extension cords and bring the microwave into my bed with me for quicker burrito acquisition. Who knows. But kids, even if everyone else at school is doing it, don't hug your microwave.

Once the nurse attaches the robot device to your stomach, a small needle goes into your stomach, leaving an even smaller catheter. Needle sticks, once a guaranteed source of hypertension during doctor visits, are at a desensitizing level of common these days. Yet, this one was different. After being activated, the robot blinks and beeps at a decent clip for 15-30 seconds before the needle is snapped into you. I haven't read all the research on how much the extent of warning before injection impacts pain perception, but this was a whole new level. I wanted to get Chloe at CTU on the phone to help me disarm this thing before the president got hurt. Boop... beep... boop... beep... Everyone nearby in the chemo room tensed up waiting for the arbitrary countdown to end, and then SNAP, the needle loudly activated like a mousetrap. Not a big stick, but with that kind of buildup, I felt it more than usual.

After managing not to dislodge the robot during a night of restless post-chemo sleep, sure enough, it activated on schedule the next day, whirring and beeping as it discharged its medicine. I didn't feel it at all, which was a good thing, since I was on the freeway at the time.

No treatments next week, so I'll take a week off from posting, too. However, next Friday is the big CT scan, the most comprehensive progress report so far after nearly three months of treatment. Trying not to focus on it too much, although obviously I'm more than ready to see what it shows. Or doesn't show.

Musically, you're getting Scottish dance pop this week. Just because it was time for something upbeat. Stay cool out there.

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The Dirty Half-Dozen

For those of you who don't know my dad, Papa D runs. And runs. Everywhere. He ran a marathon in all 50 states, which put him in a pretty elite club. Then, he did it FIVE more times, making him a x6er. At last count, he is one of only ten people to ever do that, enough to field a softball team that runs really well, but has no power hitting. To quote George Clooney in Up in the Air, “more people have walked on the moon.” And, of course, he's gradually headed toward x7, because he can't stop/won't stop.

While I've never run more than four miles at once, I did find a way to be more unique than dad.

Foundation Medicine is a group out of the Boston area that does deep genomic analysis of tumor samples from across the country. They look at a ton of genetic markers and alterations to more specifically type cancers for treatment purposes, based on hundreds or thousands of patients that experience similar tumors.

The report on my tumor came back this week. When starting to talk about it, my oncologist started using what I call her “serious cancer voice,” not heard since the initial diagnosis. This immediately sent the hairs on the back of my neck (which I'm happy to still have) bolt upright. We already knew that this cancer was a tough cookie, hitting me way too young and too fast. We now know that it has been tracked in other patients. Five of them, in the entire United States. I'm number six. Those are odds of almost 54 million to 1.

This means I had to go and get hipster cancer. So underground, so unknown. I will now picture it in skinny jeans and a manbun, making it decidedly less intimidating.

The reason for the concern in that, given a choice, most doctors, like most people, prefer fighting the known to the unknown. The genomic deep dive doesn't indicate how effective treatments will or won't be, but the almost non-existent sample size makes it tougher going in to know what exactly will work best.

At the same time, it's hard not to be a little excited on some level, and I bet my doctors are too, although I haven't asked them. You can't help but be on the cutting edge of treatment when so few other people have been to this particular edge. If and when we beat this thing, I'm going to lobby strongly for naming rights. Don't want to attach my name to it, mind you, just want to help name it.

Meanwhile, treatment goes on with chemo day #4. My white blood cell count came in below the preferred range this week, meaning I get to go in for three booster shots this weekend. The weaker count may result from pushing myself and doing three improv comedy shows in the past seven days. If that's the case... worth it. Gimme those shots, and I'll take it easy over the holiday. Among the things hard to believe these days is that I used to have a strong needle phobia. Between allergy shots and now cancer treatment, it's so routine. I also know who the best stickers are, which helps. Also, my liver functions are back to the completely normal range. My liver is working around this odd construction/destruction project being conducted in the middle of it and going about business as usual.

Next week, I get my first true week off from treatment and I'm definitely taking advantage of it. I'm sure there will be great stories to tell given my plans ahead. Also, for those of you who enjoy a rant, one of those is coming too, unrelated to the health care industry.

For a song, I turn to the opening credits of Up in the Air, which if you haven't seen, is a great film about the personal fallout from The Great Recession, relationships, and me falling for Anna Kendrick. It starts with Sharon Jones and the Dap-Kings beautifully funking up an old folk song. Happy 'Merica weekend, everyone.

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2 Gassed, 2 Furious

Day two, week two of chemo. The first week was unexpected, because there was nothing else it could be. There are approximately 4,294 potential side effects from the chemicals, so you have to wait and see what kind of sampler pack you end up with. The exhaustion was a given, but without going into great detail, my side effects could have been much worse. From a selfish standpoint, I was glad to miss the “makes food taste metallic” one. Still some painful nights, but while the pain makes you hurt and angry, you also get that satisfaction of knowing that the fight is officially on and is real. Plus, I'm now armed with information from my docs and nurses to make adjustments in week two. Try again, nausea, and I shall taunt you a second time.

Now, the weekly exhibit that the Universe has a sense of humor. Back in March, I pre-ordered a new smartphone, and knew that a cool extra plaything would be coming with it. Eventually. Demand was great, the expected arrival time kept sliding further back, and eventually it left my mind. Jump to yesterday, when I arrive home from treatment. What is on my porch? Why, it's my Oculus virtual-reality goggles. That you should specifically not use while nausea could be a threat. At the very moment that I have a pharmacologically impressive amount of anti-nausea drugs in my system already holding things at bay. Well played, Samsung, well played. Someday soon, I will use them. I will have my day. No, you can't borrow them until then.

A friend of mine suggested a theme song be chosen for the battle. I don't want to try and boil it down to one song, but I will post some that help. This week, a lesser-known Scottish rock song that Craig Ferguson picked for his final late-night show. It's about staying true to your own ideas and weirdness. Which is good advice for anyone, regardless of what you're facing. Next week, we go radioactive.