Proton Therapy

Before sitting down to Thanksgiving dinner each year, my mom makes us all write down what we are thankful for.  Two years ago I wrote, “Good Health”.  I remember this because I was lightly chided for picking such a lame and obvious thing – like saying I’m thankful for oxygen or photosynthesis.  And though I was only a month removed from running my first marathon and in great shape, I was sincere in being thankful for it.

Last year, we celebrated Thanksgiving in North Carolina, and as a family we ran an 8k Turkey Trot in the morning for fun and to maybe optimistically offset the binge eating on the horizon.  And aside from a few cyclocross races I did the month before where I was out of breath but I didn’t think anything of it because it was a new sport for me and I didn’t know what I was doing or what to expect, that 8k was the first time where I noticed a slight shortness of breath when I exerted myself.  Not enough to raise any red flags at the time, and certainly not enough to even jokingly think there was a tumor growing in my chest (though there was by that point), but I remember running with Matt at a conversational pace and, well, having a hard time conversing.  Maybe we were pushing the pace faster than I thought, or I was slightly out of shape, but I was fairly in tune with my body and knew how it responded when exercising and I knew something was just enough off that I made a mental note of it.

After these past 8 months, I don’t think anybody is going to question the importance I put on health.  This year, I’m thankful for science.  Because without medical science I literally would not be here to type this now.

So let me tell you some more about science.  Particularly Proton Therapy.  I’ve had 8 treatments at the proton therapy center in Warrenville so far (12 more to go).  Here’s how they typically go:

This is what the treatment room looks like:There is a custom back mold that was made for me when I got my initial planning scan done that rests on the bed and makes sure I’m in the same position each time.  It’s like a giant bean bag that had all of the air vacuumed out of it which made the beans retain their shape.  For my treatments, the beams of protons are directed from above me, not from the side like in the photo above.  The protons get there from a cyclotron and a bunch of magnets and vacuum tubes that look something like this behind the scenes:Lasers shine on my body and after making a few general adjustments so that the tattoos on my skin line up with the lasers, I get my custom molded mesh mask placed over my face and locked into place so that I stay reeeaaaalllly still.  The picture below isn’t my mask, but it’s the same idea and covers my neck because that’s part of the area where I get a dose of protons.Once I’m locked down, I get a couple X-rays taken to figure out my exact position in relation to the machine and how it compares to my original scan.  A few measurements based on those films are made, the table I’m laying on is moved slightly to correct, and more X-rays are taken to confirm the new position.  Repeat as necessary.

Once I’m in position, a large brass aperture shaped to my specific treatment area is loaded into the nozzle at the end of the machine.  It looks sort of like so:Only mine has a widely different opening in the middle.  In front of that brass disk, there’s a big plastic compensator that covers it and is carved out to different depths to control how much energy the beam of protons has in certain areas as it hits my body.  The biggest advantage of proton therapy over traditional photon therapy is that protons penetrate to a certain depth and then stop and dissipate all their energy, sparing the health tissue behind it, reducing the possible nasty side effects.

The actual beam of protons are then fired for about a minute.  Yes, it’s silent, and no, it doesn’t hurt.  In fact, I can’t feel a thing.  And then a different aperture and compensator are installed, I’m moved to a slightly different position, and everything is repeated again.  In total, I have 6 different combinations of beam shapes and positions that cumulatively add up to deliver the required doses in the necessary areas, but I only get 3 different ones on one day, and the other set of 3 every other day.  The whole process each day takes about 45 minutes from when I walk in the treatment room.  From my actual treatment plan, here’s where all the radiation is focused (front view):3D view (yellow tube in back is my spinal cord for reference):

It’s mostly concentrated around all the scar tissue right behind my breast bone, and then it splits at the top and goes up each side of my neck, sparing the esophagus in the middle.

The side effects are pretty minimal.  So far I have a skin rash in the treatment area that looks like a sunburn, and a perpetual sore throat.  I have a special ointment to alleviate the redness, but I’m told it’ll continue to get worse no matter what.  At least it doesn’t itch or throb or hurt like a sunburn on anything.  In another week or so, I should start to feel pretty fatigued, but that should be the extent of it.


I went for a run last night to the high school and on behind it and to the nature trail simply known as the Prairie Wolf Slough.  It’s a little slice of nothing that starts in a nondescript back corner of a soccer practice field and winds its way along a stream, behind a few unrecognizable office buildings, before ending in a loop around a well developed and cared for slice of native prairie and wetlands.  As a student in high school, I remember the time our gym coach caught a garter snake skirting across the path when we were running the loop for class.  Or the few times we nearly kicked soccer balls over the chain-link fence and into the dirty stream.  The stream that we worked to clean up by clearing overgrown nonnative trees and planting native grasses.  During biology class as a freshman, we researched the Big Bluestem.  We captured grasshoppers and spiders to put in miniature bio-domes we made out of 2-liter pop bottles.

The sun had long since set, and I was running with a headlamp, because although the drone of cars on the nearby highway filled the air, no streetlamps could penetrate the thick growth and light my path.  But when I think of the Prairie Wolf Slough, there’s just one memory that always floats to the top.

As a senior in high school, I took AP Environmental Science (APES), which everyone knew was the easiest AP science class, but I enrolled in anyway in lieu of taking something that would be truly useful in my college career, like AP Physics.  Not that APES wasn’t useful in the long run, but it was not a course that challenged me.  I dropped out after the first semester, because the lure of a few extra free periods as a second semester senior was too great, and then I took the AP test at the end of the school year anyway and passed it without breaking a sweat.

But what I didn’t understand at the time was that it was really an early introduction to the liberal arts.  The one day in class that I remember most is the day our science teacher took the time to turn over the class to the art teacher.  She gave us paper and pencils and charcoal, and we went outside behind the new wing of the high school and sat on the ground, facing the stream that runs behind the school and she told us to draw.  Just draw.

She gave us a few pointers inside before we ventured out, which I boiled down and interpreted as “put charcoal on the paper where there are shadows, and leave the highlights that you see alone”.  Really pretty basic advice, but for my mind that was wondering more about what the Kyoto Protocol is and why we hadn’t ratified it, and had never really tried sketching or drawing or painting before, doors to a whole new world opened up.  Instead of outlining objects, like I was used to in the past, I shaded the paper where the trees in the background sat in front of the sky.  And the stream – that was darker yet – where trees still hung over the banks and didn’t allow for much life to grow under the canopy.  The narrow bit on my paper where there was little charcoal was the bridge built from railroad ties that led to the football practice fields.

Nothing I came away with that day was destined to be framed, or even hung on the refrigerator at home, but objects were no longer simple outlines meant to be filled in with a box of 64 crayons.

Every Sunday morning that I’m in Michigan and able to, I go to Jack and Julie’s house (aka the monastery) for their “open studio”, which is at its core, a chance to get together with other like-minded folk and make things.  Watercolors, handwritten letters, music, portions of novels, poems, art, maybe just an email to a friend.  So we sit and chat and doodle and drink Jack’s coffee and think about the world and watch the seasons change, and make stuff.  If you let it be, it can be little intimidating to see others around the table idly chatting and yet still nonchalantly creating beautiful paintings with the other half of their brain, but that’s to miss the opportunity.  For every perfect sheet of art ripped out of a notebook, there are a dozen pages filled with scribbles and tests and “I wonder what it would look like if I just put my pen on the paper and let it take its own path”.

And therein lies the beauty.  The creation.  The making of stuff is how we grow, and somehow along the way, between high school and this year, I forgot that even though I’m not an innately gifted sketch artist, there’s really no such thing as a “failed” drawing.

Not to say that I don’t continuously make other stuff – like the thousands of photographs I share with the world, or words in a blog post, or a funny joke in less than 140 characters, or a chapbook with a friend, or just a fire in the fire pit on that back patio – but I was too self-conscious about my drawings and music before.

I’ve been taking my pen to paper more often lately when words won’t find their way to the page, even just to draw the cup of coffee in front of me, or the pear in the fruit bowl for a still life challenge, or a mountain landscape I just imagined in my head.  Paper is cheap.  Pens and pencils are cheap.  Stop worrying about “wasting” a page in your notebook.  Let’s make more stuff.

The longer I lay here

I’m currently typing this from the crude home office I just set up in the living room at my parents’ house in Deerfield.  It has a window and everything!  Hello future lost hours of productivity staring at the front lawn instead of the the pictures of Italy on the wall in my cube back in Michigan!

I’m back in Illinois for the next 4 weeks while I commute to Warrenville every day to get proton radiation therapy.  I’ll be doing my job remotely in the morning, then getting zapped in the afternoons, and then since I forgot it gets dark at 4:30pm here in the winter, I probably won’t be able to ride my bike much, so if any of you are in the area, we should hang out instead.  I’ll regale you with stories of Michigan and you can buy me beer.

One of (or maybe the only) good thing about having my start date for radiation pushed back so far is that I was still able to see David Bazan play in Grand Rapids on was a beautiful day to stay the same

Never gets old.

So this morning I packed everything I thought I’d need for the next month and for all future winter weather conditions bound to arrive shortly into my car and drove straight to my treatment appointment.  I was there plenty early, so after a quick walk around the nondescript office park to stretch my legs a bit, I went inside and got ready for my first treatment.

Here’s how it’s supposed to work:  I lie on the treatment table in the custom back mold and head mold that was made the last time I was there.  Then they place the custom netted face mask over my face and neck to make sure I don’t move.  And then they adjust my body slightly so the tattoos on body line up with the lasers shining down from the ceiling.  If that’s all good, they take X-rays of my body in relation to the machine where the protons would come flying out at me.  The machine doesn’t move, so the table I’m on rotates 90 degree and they take another X-ray.  Studying those results, they make any minor adjustments to the positioning of table I’m laying on, redo the X-rays to confirm I’m now in the final correct position, and then things can proceed.

But that’s as far as I got.  They couldn’t get the machine to calibrate correctly when I was laying on it, so they let me get off and regain some comfort while they troubleshooted.  Ten minutes later, they told me to go home because they weren’t getting a quick solution, and when the precision of the protons being fired at me is down to a few millimeters, there’s no room for error to be “close enough”.  I was there for over an hour while they tried to get everything set up perfectly for me – all for a blast of protons that will last about a minute.

So everything is pushed back a day and we’ll try again tomorrow, as if I wasn’t already anxious enough to be done with this all.  The treatments themselves are painless, and the side-effects should be limited to a little fatigue and a skin rash in the area of treatment, but that’s about it.  A lot easier than chemo.

In the meantime, I think I’ll have another beer in my hot white lounge chair:





A race in which I thaw out

I’m half awake, standing on the Metro platform dressed in a black garbage bag.  It’s roughly 32 degrees outside and I’m trying to store all the radiant heat I can.  A dozen of us pack into the train the moment the doors open, eliminating all personal space but providing additional heat.  We all ride one stop and then exit to a zoo of other runners trying to find friends and soak up one more minute of underground heat.  The escalators leading out of the station are all broken.  Sorry for the convenience.  A stair workout – exactly what I needed immediately before running a marathon.

I was the most under-dressed person I saw the entire morning as I shivered my way around the Pentagon to the bathrooms and finally to the start corral.  I was adamant that my 2″ inseam short shorts, a singlet, gloves and arm warmers were all that were necessary.  I met up with my Matt, John, and Christine without any problems, and so we huddled for more warmth and waited for the start.  There were skydivers landing on a patch of grass on the opposite side of the corral.  V-22 Ospreys flew overhead.

My toes were numb and my knees turned purple, but waiting with others and watching the sunrise made the time pass faster.  As the gun went off, runners everywhere started peeling off the extra layers of clothes they’d brought to stay warm and threw them to the side.  As we lurched and walked forward to the start line, I scoured the side of the road for something easy to pull on and grabbed a zippered hoodie and a nice ski hat.  The things people throw away! (That I would then throw away after 20 minutes anyway. Though I did save the hat by passing it off to my mom after I was no longer freezing.)

Matt and I decided to run together, and I was more chatty than usual while running as we took things easy and just enjoyed the run.  The road was definitely less cramped than at the Chicago marathon, even though the course did get narrow at several points.  The course has a two main hills in the first 8 miles, after which point it levels out and is flat like Chicago for the final 18 miles.  Because of this, the fact that I’d only just finally recovered from my last marathon, and that Matt and I were taking the race casually, I was guessing my overall time would be about 15 minutes slower than Chicago.  After running a few 10:30 min miles from the start, even that estimated time seemed optimistic.

But after climbing the two hills with relative ease – I was fearing they’d take more out of my legs – and finally warming up and actually being one of the most appropriately dressed runners, our pace naturally quickened.  Not purposefully, we just ran the speed that our bodies allowed, because faster or slower would be wrong.  We always ran the right speed.

We passed through Georgetown without difficulty, passed the Kennedy Center by the river, and went right around the Lincoln Memorial turning towards the loneliness of Haynes Point.  I handed off my gloves to Ellie because I thought I was getting too warm, which of course meant that my hands started getting cold and I had to run another 4 miles before I could get them back.

The spectators thinned out and there was only the sound of runners breathing, shoes on pavement.  Everyone was less chatty than at the beginning as we approached and passed the halfway mark.  I was a little surprised at the ease with which Matt and I made up time and reached the 13.1 mile mark well under my made up goal of 2:10.  Before the race, and reflecting back on running Chicago, I figured it wasn’t going to be much use trying to go slow in the first half to even- or negative-split the marathon.  Since we never really trained for the race, it was going to hurt just as much in the final 6 miles no matter how fast we reached the halfway point.

Contrasting to the Chicago Marathon, there were a lot fewer people spectating along the course, but whereas Chicago was almost completely barren between miles 14 and 18, the Marine Corps Marathon had people at the right time as we ran down the Mall from miles 16 to 20.  It was a very welcome boost.

I was a little wary with how good I was feeling after 17 miles, and anxious not to jinx things.  In Chicago I was already deep in my pain cave, but the cooler temperatures in DC kept me fresher, and although my legs were starting to feel fatigued and I couldn’t accelerate or change pace much, I could keep moving at my own tempo – the tempo where stopping and standing still would seem like more work than continuing to turn my legs over.

At mile 20, we hit the bridge to cross back over the Potomac.  The combination of no spectators, nothing to look at, an extra-wide road, and the grade of the road (for drainage), erected a huge wall in front of me.  Just as Matt and I started doing math in our heads to see what our possible finish time could be and what pace we could/couldn’t finish in, I reached the point where my body started slowing down and there was nothing I could do to pick up the pace.

It was over a mile before we saw more spectators in Crystal City, and though I was pleasantly surprised by the number of people lining the roads at that point, I wasn’t very responsive.  They were handing out donut-holes which I took and then nearly choked on, and a few people were handing out beer in Dixie cups, so even though I was partially delirious, I took some and washed the donut-hole down with some lukewarm Natty Light.

Sometimes, drinking beer isn’t always the best idea.

I had to slow even more to allow my stomach to re-settle itself, but the finish line was getting closer and closer.  The spectators disappeared again as we passed the Pentagon and reached the final mile.  I checked my watch and quickly realized that although I wouldn’t be breaking my marathon PR, it was definitely possible to beat my time from 3 weeks prior in Chicago.  We were holding a remarkably even pace throughout the whole race.  I picked up the pace in the last mile, because at that point my body could take an extra serving of pain knowing that the end was literally within sight.  We charged up the final short hill to the finish, passing dozens of people in the final few hundred yards, and ended up crossing the finish over a full minute faster than my time from Chicago.

The day before, we were watching it snow in October in DC.  Three days before, I was at the proton therapy center in Illinois, getting a 4D CT scan of my insides (3D + over time to track my breathing) and receiving 5 tiny tattoos to mark how my body aligned with the machine.  I glanced at the animation of my lungs breathing on the computer screen as I walked out, still a little astonished at how much space all the scar tissue from my tumor takes up in my chest.  It didn’t look any smaller (and may not ever be much smaller) than it was 2 months ago, and at that point I really wasn’t sure if my body would hold up and I’d finish the Marine Corps Marathon at all.  But I knew I’d start, because a DNF is better than a DNS, and if I couldn’t finish, at least I’d have some fun in the beginning.  And instead, I exceeded my own expectations, and a week later, I’ve already recovered faster than I expected.

I’m due to finally start radiation therapy a week from Monday, but I don’t expect to have that slow me down either.