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Last weekend I was in New York City with my family.  We walked in no rush to get anywhere and ate 5 meals a day and tried to stay warm.

It was excellent.

I had my first post-treatment checkup with my oncologist.  With the exception of a still-and-maybe-forever low white blood cell count, my blood is basically back to normal.  I got my port flushed again, and I’ll have a CT scan sometime in March and another appointment to look at those results.  I asked when I could get my port out, and the answer is anytime I want, but with Hodgkin’s, if there is a relapse, it’s usually within 2 years.  And in some way it’s a vote of confidence to get it removed now and tell myself I don’t even want to think about it coming back, but it’s a cloud hanging over my head and this is the real world and my wishes don’t come true nearly as often as I’d like.  So I’m going to wait awhile for surgery to take out my port, and instead get it flushed every 6 weeks and monitor things and.  And.

I went for a bike ride today and had to turn around after a few miles because I lost feeling in my fingers.  I lose feeling in my fingers a lot in the winter, but this was the first time where I was afraid I was close to frostbite.  I stopped and somehow managed to warm my fingers, and after I’d convinced myself all was safe, scurried home.  I think maybe part of the problem is my gloves are too tight and they don’t let blood flow normally.  It wasn’t terribly cold out, so after that adventure was cut short, I dug out my camera and went for a brief hike in the woods.  It got dark.

Today, I picked up my new cross bike that I had ordered back in October.

And promptly slammed that stem.

3000 miles is gonna be too easy.  Especially if it never snows.

I rode bike to work today.  To the other office, closer to home.  It was dark and below freezing and there was ice and snow and I was on my fixie with skinny tires and people gave me crazy looks when they saw my helmet sitting on my desk.  Because this is the Midwest and 2 miles is a route to be taken IN A CAR.  I did not tell them that I walked to work the day before.

I had one and only one new year’s resolution last year – a quantifiable goal.  I failed to reach it, though not for lack of effort.  So this year, I’ll go for it again, and hopefully easily surpass it:

Ride 3000 miles on my bike.

It’s very concrete, and, I think, reachable. without too much strain, either.  So to not have it be too easy, I’m  not going to include any miles riding around town or commuting on my fixie.  I don’t want to try to keep track of all those short 15 minute ride around town either.  So, just the road bike.

Last year, when spring never wanted to show up, and then it finally did and I decided that maybe getting oxygen to my lungs and blood to my brain was a bigger priority, and then every other week in the prime riding months through the summer I was run over by a truck and not wanting to move from the couch – making every time I could ride all the sweeter – and then the mild fall continuing into winter had promise but I had to pack up and move and find unfamiliar roads to ride whenever there was just a sliver of sunlight, and yet I still managed to enjoy roughly 1600 miles last year.  I’d say that’s not too bad for a cancer patient.

Two years ago, while healthy and without really having a goal, I rode about 2700 miles, which was the reason for setting the 3000 mile target last year.  So clearly, I know I can get within reach of 3000 just by riding like normal, and now that I’m more apt to ride even when it’s cold, and I know the agony of not being able to ride at all, I don’t usually lack the motivation.

The 10 inches of snow we got last weekend has all melted, thanks to many 40 degree days in a row.  The roads are clear, so Mark and I bundled up and headed out for 25 miles south of town.  As always, there’s a fine line between dressing properly for 35 degrees with the wind at your back and 35 degrees into a headwind.  I had to pry my fingers off my bars when we got home.  I was cold all the way through to my bones.  But, as I’ve learned, a frozen toe is better left not contemplated when one lacks the means to warm it up.

It’s the first substantial snowfall of the season, not the turning of the calendar, that makes for a better new beginning.  Everything is clean.  A fresh slate to play on, in.  Meticulously shoveled walkways, footprints and shoe treads, tire tracks.  Cars on the highway drowned out by winds buffeting the windows.

It’s somehow less cold outside now.

Only took me 11 months to change from the default WordPress theme. Approximately 11 months too many.

Hm.  So now what?

Cancer treatments have been on my mind constantly for the past 9 months, and now that I’m finished, I’m not sure where to go next.  I am at the same time overcome with joy and hamstrung by a lack of direction.  I had one singular goal to focus on, and now that I’ve reached it, it’s a little disorienting to switch back to “normal” life.  Like graduating from college and getting thrown out into a new chapter of the world, I need someone to point out North to me (relevant: The Paradox of Choice).  Yesterday at the proton center wasn’t all too dissimilar from graduation.  I got applause and cheers and cards and pictures taken and a certificate denoting me as the 285th person to finish treatment at the center and there was cake and donuts and me forcing the staff to listen to The Age of Adz one last time while I laid perfectly still for treatment.

I also got to take home one of the plastic compensators that was used for my treatment.  I couldn’t find a picture of one online for my post the other week, so here’s an out of focus one I just snapped of mine:

This piece sat in front of the brass aperture and controlled the depth of the proton beam that was treating the tumor.  Where there’s less material, the protons went deeper into my body.  Where there’s more material, the protons lost some energy, therefore striking me with less energy and not going as deep.

I do also get to go back and pick up my mesh mask and one brass aperture as a souvenir, but they need some time to stop being radioactive, so I couldn’t just take them all with me when I left.  I’m not sure what use I’ll have for them, but they’re still pretty cool souvenirs nonetheless.  If only they’d let me take home all 8 or 10 (or however many different brass apertures I actually had), I’d make some bookshelves out of them or something.

I suppose the next goal on the horizon I can set my sights on is surgery to get my port out, or maybe the 5 year mark of having cancer in remission and being declared “cured”, but those are just waiting games, and are bound to take up much less of my mental energy.  Not so much “things to accomplish”, as “things that I want to happen to me”.

There is a sense of urgency to not waste any time.  To channel this extra energy capacity into something useful.  Something more than just marathons and triathlons.  Something in the here and now.

2 more days of treatment left.

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.