Today is a good symptoms day. Very mild cough. Only one night sweat last night. No fevers in a while. Pretty high energy and good appetite. My friend Tonx was bopping through town en route to Seattle and we got an impromptu brunch. Then we sat outside in the sun in just a t-shirt. It was incredible. I'm super stoke for the weather to start being awesome again. Especially for recovery days.
Before I had a clear diagnosis and treatment plan and was wondering if I’d die from this cancer. I didn't freak out too much before we had some real information, but minds grapes wander and thoughts get wild.
I, of course, thought about friends and family and relationships. I thought about what is important to me and where I should be spending my energy. Classic case of "if you only had one year to live..." kind of thoughts.
I thought about not being able to plant walnut trees and watching them grow for decades and eating from them. I thought about not getting to see the Northern Lights and the Blue Lagoon and bucket list things like that.
But the one big thing that I kept coming back to was that I was worried that I wouldn’t get to see the collapse of industrial civilization. Fortunately industrial civilization has invented chemo therapy and is gonna get me through this. And maybe just maybe, I'll get to see the swan song of imperialist capitalism.
I’ve launched a crowdfunding effort at tilt.com asking for help in trying to offset some of the up front costs of doing battle against cancer. If you can help in anyway large or small, I would appreciate it. If you can’t, I totally understand. I’ve been there too.
The URL is: https://www.tilt.com/tilts/i-have-cancer.
tl;dr It’s “advanced stage Classical Hodgkin’s Lymphoma”. Treatment is chemo every two weeks for six months. After that, they hope/expect that the cancer will be completely gone from my body and won’t ever come back.
#VanLife to Portland, Oregon
My girlfriend Morgan and I lived 18 months of full-time van life in #littlemisadventuretime from July 2015 to January 2017. After that, we moved into a house in Portland with Nate Duke (my BFF since we were 13) and his girlfriend Sarah Murphy. They’re absolutely great.
The day after we moved in, Portland got hit with a record amount of snow. We just got dumped on over and over. So in those days, I didn’t go anywhere, but just hunkered in. I don’t do well in the cold or the wet.
In February, I started showing signs of having a chest cold. Over the next few weeks, this little chest cold just wouldn’t go away, and other symptoms started showing up too, like fatigue and night sweats. I weighed myself to find that I’d lost about 5 pounds from my normal resting weight (135 lbs). Nothing alarming, just annoying and wintery.
By mid-March, none of my symptoms were showing any sign of going away. Some were intensifying. Sarah suggested that I see a doctor, as I might have pneumonia, which both she and Nate had had that winter. I went to Zoom Care the next day.
Zoom Care is a minute clinic kind of thing. If you imagine an iOS app as a physical place, this is that. I was hoping for “this is a cold you can’t shake, here’s some antibiotics” or, at worst, a diagnosis of pneumonia.
The doctor that saw me was really focused on the wheezing in my breath and coughs. He thought that I might have asthma. I was too out of it to push back harder on "yeah, but what about my other symptoms.” He told me to come back in a couple days if there was no change. There was no change. So, I called back and set up an X-Ray appointment.
I went into the Zoom Care clinic, got X-Rayed, and left all in just a few minutes. It was like the express lane for health care, which is pretty swell, actually. They called me that night with the results. I missed their call, and so had to try to parse their voicemail and summary email. They said it was “urgent” and I needed to come back into "clinic.” How urgent? Which clinic?
The X-Ray showed a large hilar mass — a mass on part of my lung. (And, by the way, no fluid in my lungs. So, it’s not pneumonia. Check.) They said I needed to come in for a CT Scan to get a better look at it and that they would then refer me to a specialist of some sort.
Not: asthma, pneumonia.
The Emergency Room
I posted the X-Ray image to Instagram. A friend passed it along to his dad, a longtime cardiologist. When he heard my symptoms and saw the image, he initially thought it was a fungal infection called Valley Fever (coccidioidomycosis, cocci), which is caused by a fungus regionally located in the American Southwest. Having done his residency in that region, he’d seen it often enough that he could diagnose people in other parts of the country with it when their doctors were stumped.
Morgan and I had definitely traveled through them parts on our road trip and had spent all of December 2016 in Southern California, including time out in the desert near Palm Springs. If this was a fungal infection, I had definitely been in the place to get it, more than once.
My friend’s dad urged me to immediately go to the ER at OHSU and get a diagnosis and treatment process started, rather than wait to go through the previously suggested CT Scan and referral process. If this was a fungal infection, it would just get worse every day that I waited. So Morgan and I went to the ER.
We were in the waiting room for three hours, got admitted, then spent the next seven hours in an ER room. They were reluctant to keep me there, because while I had an annoying cough and other symptoms, I wasn’t bad enough to get admitted into the hospital and wasn’t bleeding out or anything else that would be obviously urgent.
We pushed back enough that they decided to keep doing one more thing, then another, and so on. First, they did full blood work, then an X-Ray, then a CT Scan. Each time, the doctor and specialists came back with the same response: “Well, you are interesting.” I think what they meant was that my combination of symptoms was not obviously one thing or another.
At the end of it all, the ER doctor called an OHSU pulmonologist (at midnight thirty) to get me set up with an appointment. Normally, this is done as a referral from a primary care physician, but I don’t have one of those in Portland yet and it takes weeks/months to get it all set up.
Not: tuberculosis, sarcoidosis.
I met with the chest doctor. We talked for an hour about my symptoms, my long history, and my more recent history. He saw on the CT Scan that my left neck lymph node was a little swollen. When he felt it, we could both tell that it felt different. He conferred with his attending doctor (boss/mentor). They both came back. The attending doctor asked some additional questions that I thought were pretty clever:
- How much schooling had I done? Did it involve any science/lab work where I could’ve been exposed to chemicals?
- What kind of jobs had I worked? Anywhere I could’ve been exposed to chemicals?
At the end, they gave me the real talk. They would need to biopsy the lymph node in my neck to see if this was cancer, and if so, what kind (very unlikely: lung cancer. very probably: lymphoma). We also ordered the fungal infection test (just a blood draw). He said that A) I had a serious amount of illness and that B) either way (fungal infection or cancer), I would be dealing with this for the next several months at least.
Hurry Up and Wait
Meanwhile through all of this, my symptoms continued. The coughing, fevers, and night sweats just got worse. I was starting to think that every day was going to be worse until whatever treatment started. I went through a pretty rough patch for days where I couldn’t do anything but lay in bed and cough during the daytime. The only breaks from that were when I’d go downstairs to pee and refill my water bottle. But just that short trip was exhausting and would send me into a coughing fit.
I had lost my appetite and my palate got weird. For about a week, I basically became a super taster: everything tasted too salty, too sweet, or too acidic. This was especially problematic because my weight had now dropped to 122 lbs and I was trying to fatten back up in preparation for what was almost certainly going to be chemo.
A note about the night sweats. Every night, I would sweat through three or four t-shirts, the sheets, blankets, pillowcase, and a few towels. Things weren’t a little damp. They were fucking drenched, like I had spilled a glass of water in bed. This happened over and over all night, every night. It was worse than the coughing. It was worse than peeing the bed as a kid.
And the fucking waiting. Between each step of the process were a few days of waiting (while symptoms continued) and not knowing the answer to what was happening inside of me. It was especially difficult when we were pretty sure that it was lymphoma.
Fungal Infection Results
While waiting to have the biopsy, my results came in for the fungal infection tests.
We really wanted it to be fungal infection. Treatment is a few months of pills every day.
Those tests all came back negative.
Not: coccidioidomycosis (Valley Fever), histoplasmosis, blastomycosis, aspergillosis.
The biopsy appointment rolled around. First, they numbed the area with a shot of lidocaine. Like the dentist, there was a little pinch from this. Then they looked at the lymph node in my neck with an ultrasound while they stuck the larger needle in place. It was 17 gauge. This would serve as a kind of guide or conduit for the smaller needle to go though. The smaller needle was 18 gauge. It was the one that did the actual collection of tissue cells from my lymph node.
Again, the attending doctor was present while the radiologist navigated my neck using the ultrasound screen. It was like a video game where my squiggly lymph node was the mini-boss. When they got a good connection between needle and lymph node, they grabbed a chunk of tissue. The action made a loud click, like a staple gun. Each sample was a millimeter or two of tissue. They did this six times. I got a bandaid on my neck and then we were done.
At this point, it was possible but very very unlikely that it was lung cancer. It was almost definitely lymphoma and nothing else. This biopsy was about finding out what kind of lymphoma and what stage it was. If it somehow turned out to be not cancer, then I would’ve been like an actual episode of House.
Not: lung cancer.
Days later, I got the call from the pulmonologist. He told me that the biopsy showed that it was Classical Hodgkin’s Lymphoma. He then put in a transfer request for me to move to oncology/hematology.
OHSU Center For Hematologic Malignancies
I met with my oncologist two days later. I chose this person based solely on his schedule availability, but he turned out to be totally amazing. We talked for a couple hours about lymphoma in general, and Hodgkin’s in particular. We talked about preparation for treatment and the treatment plans. He took his time and answered all of my questions patiently. Morgan noticed that he and I speak similarly too.
He told me that the cancer is stage 4 or “advanced,” but in Hodgkin’s Lymphoma land, that doesn’t matter as much. The treatment and outlook would be the same whether it was stage 2 or 4. With lymphoma — a blood cancer — by definition, it’s gonna spread, and is thus less about the single location where the mass is, like, say, breast cancer would be. Unusual lymph nodes are just an indicator that something is happening. He also told me that if I had come in a year ago, we’d be no better off and that they might not have even been able to diagnose it at that point.
His Director of Nursing followed up with all of the other details. She’s also great and spent an hour or two with me and Morgan, going over every little thing and answering all of our questions. We even talked Cubs World Series Game 7 a bit.
They ordered four tests to do before treatment, which will form a baseline to compare to as treatment progresses.
- Some blood work to look at bloody things including a complete blood count
- An echocardiogram to measure the strength of my heart squeeze
- A pulmonary function test to measure the strength of my lungs
- A PET scan to see if the cancer is below my diaphragm too
Each of those is because the different chemo drugs will take a toll on my heart, lungs, and blood count. They’ll continue to measure those things to make sure that nothing drops too low, adjusting the treatment if it does.
Next, I’ll get a port placed underneath my skin by my collarbone. Chemo drugs are also really hard on veins. If they were administered via my arm vein, that vein would be destroyed. Alternately, they could insert a needle into my arm, and then run a long plastic tube up my vein in my upper arm, and then across my shoulder and collarbone area, finally ending up near my heart. Every time I get chemo. Sounds terrible. Instead, this port will get placed and they’ll stick their needle into it each time. I’ll be a cyborg.
After these four tests are run, I’ll start chemo. The first chemo session is for six hours. Each time after that, I’ll go in for about two hours every two weeks for six months. They have high confidence that they’ll be able to completely eradicate the cancer from my body during that time and that it’ll never come back. I’ll have a slightly higher chance than the rest of the population for getting another cancer.
I’ll likely experience all of the same side effects and symptoms that you know about for chemo treatment. I’ll lose my head hair but probably not my beard, and so we preemptively shaved my head.. The thing that most surprised me from the doctor about what I should expect during chemo: I might very well gain weight during the process. Apparently, A) loss of appetite is a symptom of cancer and B) the cancer itself eats sugars in my body faster than almost anything else.
My Tribe Is Strong
I can’t say enough how amazing everyone has been so far. Friends and family have reached out and offered material and emotional support. Several people have offered to fly into town to spend time with me and help with whatever needs helping with. Some have already bought plane tickets. It means the world. My roommates Nate and Sarah have been super supportive. My girlfriend Morgan has been there at all of my doctor stuff and has taken care of me through all of the symptoms — non-stop coughing fits, night sweats, barfing, and crying.
I can’t imagine doing this alone.
The material and in-person support that everyone has offered is so important to me because it means that some of the load on Morgan can be relaxed. She’ll need support through this too.
Small-World Connections to OHSU
One last thing. Everyone at OHSU has been really amazing. They’ve taken the time to really listen to me. It’s the quality of customer service that I wish everyone could experience at every hospital. Interestingly, there have been a few small-world connections to OHSU in this process.
- Nate moved to Portland in the first place a decade ago because his then-girlfriend was getting her nursing degree at OHSU.
- His teaching partner’s husband works in the Center For Hematologic Malignancies.
- A longtime friend from Salt Lake was visiting me in Portland, and his friend is a nurse in the chemo department. She might very well be the one to administer my chemo.
- I had brunch with an old LA friend that lives here now and his partner. His partner works in the same building one floor below the Center For Hematologic Malignancies.
A special thanks to Abby Phoenix for taking the time to read and edit this, fixing my mistakes and making sense of my raw draft.
So, you know, I moved to Portland, Oregon. In the winter. ↩
I might also have asthma of some sort, but this isn’t that. ↩
Zoom Care was closed at this hour. ↩
I’m a reverse Brita filter. ↩
This test uses radioactive sugar which my heart, brain, and cancer will eat up fastest and therefore will light up on the scan the brightest. Radio. Active. Sugar! ↩
They’re not sure if that’s because of having Hodgkin’s Lymphoma or because of the way they treat Hodgkin’s Lymphoma. ↩
Facebook is a massive surveillance social graph1 which was already dangerous before an openly fascist government held power.
If you imagine that dark times lie ahead. If you foresee war. A domestic civil war, a domestic war against a fascist coup, a world war. If you think we’re heading into an apocalypse. If you’re worried about registries and roundups.
Then, start acting like it’s already the future.
Keep It Secret, Keep It Safe
Stop saying publicly what you’ll do, if… because when dotdotdot happens, there’s a record of your premeditation.
Don’t make your enemies' job of finding you and your associates easier by broadcasting it on Facebook.
Cops Love Facebook
Facebook has a map of the relationships between a billion plus people. They are cavalier with what they store about us, our behavior, and our relationships. Cops already use Facebook to target activists, dissidents, protestors and potential co-conspirators.
When the fascists start their roundups and pogroms, this social graph (that we voluntarily created and Facebook extended) will make their job much easier. It’s a self-populated registry.
This is not a drill. There is a war on. It’s not coming in the future. It’s already started.
Imagine if the SS, Stasi, COINTELPRO or any secret police had this kind of map. Hell, imagine if King George had this kind of map! You think Paul Revere2 was broadcasting about his plans for a midnight ride?
Dark and dangerous times are upon us. We must now make the decision between what is easy and what is right.
Protect yourself, your friends, and your friends’ friends.
Quit Facebook too.
Secure Your Communications
Quitting Facebook is, of course, not enough to protect us. Whether you quit Facebook or not, you can harden your security and privacy defenses by doing a few easy things. Please do.
Install Signal for iOS or Android (or Mac via Android). Use it for messaging. Don’t use Facebook Messenger or SMS or anything else. Don’t use this “only for the stuff you don’t want getting out”. Use it for everything all of the time.
Use DuckDuckGo for all of your online searches. Change the default search engine on your browsers (on phone and laptop) to DuckDuckGo, too. They don’t keep logs of everything you search for. I’ve been using this as my default search engine for a couple years. It just gets better and better.
Get a good password manager and swear by it. Don’t use the same password on any two sites. Usestrong passwords. (My password recipe is 64 characters of letters, digits, and symbols.) I use 1Password on Mac and iOS and love it. Use two-factor/multi-factor/2FA authentication everywhere that you can.
The EFF’s guide is really great and goes into a lot more depth than this post. If you’re feeling adventurous, read that and harden your security and privacy even more. It provides detailed instructions for things like GPG and Tor. Highly recommended.
You can think of a social graph as a map of you, your friends, your friends' friends, and so on. It’s map of who knows whom, how they know them, who they have in common, what they have in common, the distance between relationships, etc. The reality is that we’re all very interconnected with each, by not very many jumps. That’s what makes Six Degrees of Kevin Bacon possible.↩
Paul Revere’s ride was itself an attempt to communicate securely, and he was detained at one point in the course of the ride by British forces. It is true, however, that Revere would not have been able to leave for The Ride if he had explained in advance on Facebook that he would do that in the event of British armed action.↩