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On Monday, I finally laced up my running shoes and went for a jog with my sister – the first time I’ve run since mid-March.  It was a a semi-short run, around 3 miles, but about as far as my running legs can carry me at the moment.  It felt good most of the time, but the next day my newly-used muscles let me know that I have some work to do.

Back in February, my brother Matt and I signed up for the Marine Corp Marathon in Washington DC at the end of October.  At the time, my dream was to spend the summer training and possibly run fast enough to qualify for Boston in October, which would mean running a 3:10 marathon.  Obviously, that goal got derailed pretty quickly.  BUT, I’m still planning on running (maybe walking) and finishing it this year, cancer be damned, no matter how long it takes me.  I know what it takes to train for marathon, and maybe more importantly, what it’s like to try and and extend yourself to finish one without properly training.  I ran the Grand Rapids marathon in 2009 with my longest training run totalling out at 14 miles.  It was painful, to say the least, but I learned a ton, and I have no regrets.

They say you can’t sign up for your next marathon until you forget the last one.

The other week, I had a friend ask me what the appeal of a full marathon really was.  And I drew a blank.  What’s wrong with just running a few miles every day and leaving it at that?  I don’t know.  I don’t really remember what motivated me to sign up for the Marine Corp Marathon in the first place.  I think maybe I needed something hard.  Something that would keep me focused and a difficult goal to work towards.  If I rediscover what the attraction of the marathon is in the training process and can put it into words, I’ll share it here, but for now, I can’t remember what I’m doing this for.  Meanwhile, I’m reminded of a couple quotes by Yvon Chouinard: “The best journeys answer questions that in the beginning, you didn’t even think to ask.”

“So it’s kind of like the quest for the holy grail, well you know, who gives a shit about what the holy grail is, it’s the quest that’s important. The transformation is within yourself, that’s what’s important.”

“You get to the top of a wall, there’s nothing up there. Lionel Terray, the great French climber called it ‘The conquistadors of the useless.’ Yeah, the end result is absolutely useless, but every time I travel, I learn something new and hopefully I get to be a better person.”

Whatever it is inside me that’s itching to run a marathon, I can’t put a finger on it, but it feels like something I have to do.  I’ll figure out why it’s important along the way.

Which brings me to my next point.  In addition to running the Marine Corp Marathon with my brother (and cousin and cousin-in-law, who I just learned are also running it), my sister and a few of my cousins have decided to run the Chicago Marathon and raise money for lymphoma research.  I can’t describe how meaningful it feels to have others get up and run for 26.2 miles for me when they wouldn’t have done it alone.

I continue to believe that – barring injury – anyone can finish a marathon if they are willing to work for it, and so I’m looking forward cheering them along during every mile in Chicago in October.  So, if you want to help, I implore you to donate money to their Team in Training pages, even if it’s only $5:

Lydia

Susan

Caryn

Kim

And I can say how, directly, even though Hodgkin’s lymphoma is treatable and has a high cure rate, recent research into cancer drugs has made my treatment more pleasant that it used to be.  I mentioned to my oncologist a month ago that I was a little nauseous from the chemo, so for the last couple rounds, I’ve gotten a new anti-nausea drug that only came out on the market a couple years ago.  I don’t remember what it’s called, but it works, and as a result, chemo sucks just a little less.

Yesterday, there weren’t enough hours in the day to fit everything in.  I started the day by rolling out of my driveway at 7:30am on my bike for a long ride with a group of 20 or so others.  The plan was to do 3 loops, equaling a 100 miles, with stops in between.  I was uncertain I had the fitness to do a century, so my plan was to do the first 2 laps and fit in about 75 miles (previous long ride of the season was about 40 miles).  That’d also give me some time in the afternoon to hang out with a friend who was back in town.

The weather was perfect, the ride was great, but almost a little too casual, and we were running a little behind schedule.  I was surprisingly fresh throughout the ride, and at the end, once I wasn’t lost and recognized what road we were on, I went off the front and hammered the rest of the way home, happy with how my legs responded after 83 miles of riding.  I rushed to change and clean up, then met Allison and headed out to the lighthouse to soak up some more sun and boat-watch.  A few hours and some Captain Sundae later, she had to leave, and I had a birthday party to get to.

One of my coworkers was celebrating her birthday at the Saugatuck Brewery, where she’d made her own batch of beer, which was ready for consumption.  Unfortunately, I couldn’t enjoy any of it, because I have chemo right now, so no alcohol for me, but it’s an IPA, and I’m told it was quite hoppy (yum).  Luckily, I did bring 2 growlers to fill up, so I’ll find out for myself how delicious it is later this week.  God I can’t wait.

I wish I could’ve spent more time doing every activity from yesterday.

And then, today, the hours don’t move fast enough.  I’m sitting at the clinic with a tube sticking out of my chest, the hum of the infusion pump filling the room, filling me with drugs.

Summer was in hiding the past couple days, and along with some fierce storms earlier in the week, I’ve been pretty inactive.  In the future, the weather should cooperate with my feelings so I don’t have to cancel any more bike rides.

But the clouds parted this morning, and I’m at the peak of my feeling-goodness, so I jumped out of bed, slammed my contacts in my still-unfocused eyes, and got on my bike to join the sprint ride.  With about 20 people, it’s always a fast and free flowing ride, and today was no exception.  I tucked into the back of the pack in an effort to not get dropped as the road ticked upward on Beeline Rd.  And it worked.  I’m obviously not winning any sprints with my fitness, but this morning was the first time I wasn’t put into the red and fallen off the back.  Progress.

After the obligatory swing through the farmer’s market (dangerous place to be on an empty stomach) and a stop for coffee, I went to the country fairgrounds for our annual employee picnic.  It’s mostly geared towards families with kids, with carnival games and big inflatable things to play on, but free food and the faint possibility of winning a prize in a raffle was enough to get me there too.  I ate until I was uncomfortably full, which tends to happen more than it should, then sat in the sun for a bit watching my coworker’s band perform before heading out when none of my tickets were drawn in the raffle.

More fun was the annual employee meeting that was held last night at the Civic Center.  The meeting itself wasn’t anything too special – a bonus was announced, a few speeches were made, awards were handed out, some laughs were had – but it meant I got to leave work early (a well earned break), and more importantly there were specials at most of the businesses on 8th St. for employees afterwards.  So for once I didn’t have to pull anyone’s leg to get them to celebrate happy hour with me.  It was also a rare opportunity to actually casually chat with other employees, something that I think happens all too rarely as things are now.  Oh, and I got a discount on some stylish new cycling shoes.  If I can’t be fast on the bike, I might as well look good at least.

I came home today and found the June issue of News from Hope College in the mailbox (online pdf version here).  On pages 14 and 15, there’s an interesting story of two recent grads who were roommates – both of whom had to fight cancer.  My first reaction – what a crazy coincidence.

My second (more selfish) reaction – what short treatment periods!  Three months of chemo and one month of radiation for the girl who had Hodgkin’s lymphoma years ago, and only three rounds of chemo over two months for the other girl.  Shit… where do I sign up for that kind of quick cure?

Of course, it’s a little ridiculous to compare scars and see who had/has it harder than anyone else.  If there’s one thing I’ve learned, it’s that cancer sucks for everyone who gets it, no matter the severity.  I can connect with them on a deeper level if they only had a little chemo or were bedridden for months.  And chemo treatments vary a lot, so there’s not really a way to know exactly what someone dealt with from such a short story.  Maybe they couldn’t even leave the house whereas I can still go to work most days.  It’s mostly useless to compare.

But anyway, next week will be my 6th round of chemo, and 12 weeks since I started.  I literally cannot even imagine how great it would be to be done right now, after about 3 months.  Yet I still have too many more months left.  Hopefully October?  And then radiation after that?  Who knows, my next PET scan isn’t even on the schedule yet.  Gah, looks like it’s time to go willfully suffer on the bike again.  The rain clouds have cleared.  Beats involuntarily suffering on the couch…

I sleep on my stomach, and I still haven’t gotten used to having a port in my chest.  Every morning when I wake up, it’s not painful, but uncomfortable – its way of saying “don’t forget I’m here”.  Which makes every morning start on a slightly sour note, leaving me to tenderly step into the day and figure out if it’s going to be a good or bad day.  Or a good or bad couple hours, because I can turn the corner in either direction pretty quickly.

So this morning started off slowly again, with no pressing tasks to take care of, and unsure of what I should actually do all day.  No plans whatsoever.  I debated going for a bike ride, but didn’t feel up to it at the moment, the memory of yesterday’s morning sprint ride and the shellacking it gave me was still fresh in my mind.

But a couple eggs, some fresh bakery bread, and an hour of DVR’d Tour de Suisse later, I decided I might as well head out for a ride while the weather held up, even if it was only for 10 or 15 miles.  35 comfortably warm miles, and 3 swallowed bugs later, I was actually rejuvenated.  I set out with the plan to find a couple hills to climb near the lake, and mission accomplished.  It takes a little exploring to figure out what’s a road and what’s somebody’s driveway (ignoring a few No Trespassing signs along the way), but I found some actual elevation change, and even a little wildlife on the side of the road.  A fox scampered across the road in front of me before slinking into the woods, followed by a deer staring me down right next to the road as I rounded a switchback up a lonely road with no less than four NO SKATEBOARDING signs.  I tried to imagine a good backstory for the skateboarding hate on the nearly desolate road, but I came up empty.

I passed a turtle on the side of the road near Gilligan Lake that seemed to be contemplating whether it wanted to cross the road and risk a couple tons of metal on rubber rolling flying around the bend.  But I think mostly it just wanted some sun.  A few miles down the road, I rolled through an intersection only to peer to my right at a car that had stopped and pulled to the shoulder.  Out of the car were two little girls and their father shepherding another turtle off the road and into the safety of a drainage ditch on the opposite side of road.  Cute.

Passing over I-196 and taking another turn south, I headed into a steady wind, but actually felt strong thanks to a very slight downhill gradient.  Another biker surprised me when he showed up on my wheel and remarked “quite a pace you’re setting”, as I continued to spin seemingly without effort.  He couldn’t hold my wheel and dropped off.

I decided to go as far as a loop over the river and through New Richmond, to tack on some more climbing.  That deserted section of Old Allegan was in worse shape than I remembered; I know why we don’t go down that road very often any more.  I continued home at a leisurely pace for the final 10 miles, constantly sitting up and riding without hands and claiming the road for myself.

Highlights from the past week:

-Ben and Bridget’s wedding in Chicago

-Buying a new phone to play with

-Cubs

-Whitecaps

-Bikes

Lowlights:

-Chemo

-Trying to push through it all at work

-Passing my 3 year anniversary at work

-Sinus congestion

-Fatigue

“It’s not a question of better or worse. The point is, not to resist the flow. You go up when you’re supposed to go up and down when you’re supposed to go down. When you’re supposed to go up, find the highest tower and climb to the top. When you’re supposed to go down, find the deepest well and go down to the bottom. When there’s no flow, stay still. If you resist the flow, everything dries up. If everything dries up, the world is darkness.” – Haruki Murakami from The Wind-Up Bird Chronicle

When I read The Wind-Up Bird Chronicle a year or two ago, I thought of flow as something like a big sine wave with a low frequency.  Gradual shifts that moved on a timescale similar to the seasons.  Lately, the peaks and valleys change places weekly, so when I’m going up, I climb I high as I can and ride it as long as I can.

And usually that takes the form of actual bike rides.  I got out on the road 4 days in row last week, despite the 90+ degree heat.  I found a climb that’s steeper than 20% over the weekend.  I got dropped on Monday and rolled back home exhausted to the point where you have to sit and stare at the ground through your knees for 3 minutes before you can contemplate taking your shoes off.  It was great.  The battery on my bike computer died and upon replacing it, I finally made the switch to metric units.  Anything to feel more PRO.

Tuesday was my birthday, and a lot of small things made it worth it.  I stopped for coffee and a muffin on the way to work and the streets slowly began to wake up.  It reminded me of Brisbane for some reason.  I went for a bike ride, like normal, and then had dinner and drinks with my cousin.  Simple, but effective.

My new boss also started this week.  It’ll take a bit before he gets his feet under him and we can see what he’s really like, but so far I’m cautiously optimistic.  He sounds like he’ll bring a different management style, which is sorely needed.  We’ve been overloaded at work lately, which always seems to be the case, but I genuinely really enjoy working on the team of 5 people I interact with the most, and so I haven’t been stressed out about it like some others.

Two weeks between treatments is just enough time to think things are normal again before succumbing to the awfulness of chemo.  Enough so that I’m still in a good mood as I walk into my appointment and am cheerful with the nurses.

I had chemo on Tuesday, because things were closed on Monday because of Memorial Day, and there was quite a backup of people getting treatment with me.  It was crowded enough that I had to sit out in the main room with 10 or so chairs instead of a private room, which was both good and bad.  It was bad because sometimes that extra bit of privacy is nice to help pass the time.  It gives a little more space to feel comfortable in, and it allows me to fire up a DVD to watch and entertain myself.

It was good because you get to see how other people deal with their own treatments for whatever cancer they have.  Some tried to take naps, some talked a little too much, and another woman just pulled out a laptop and started working (wish I had one so I could do the same).  It’s a little depressing that I was by far the youngest person there, whereas some of the older patients looked to literally be toeing the line of death, but at one point there was another guy maybe a little older than me who came in to get some injection.  He had gotten a blood transfusion so his body could tolerate the chemo, which I’m glad I’ve been able avoid.  All of my blood values have been stable, and not terribly too far out of range (no hope of an EPO prescription).

But when his nurse approached him and asked how he was doing, he responded, without skipping a beat, “Well, I’m not dead yet.”  Which I found hilarious, because that’s exactly what I say to myself (not aloud very often) every time someone asks me how I feel.  Only I say it in my head with a British accent like in Monty Python because that’s how it’s really funny.

I was delighted to discover that I’m not ridiculous for wanting to respond like that to everyone.  I know you’re all curious to know how I’m doing and are generally interested in hearing what I feel like, but it changes so much and so often that it’s not worth talking about in much detail most of the time.  It just sucks.  That’s all there really is to it.

On Wednesday I had to dip into my anti-nausea meds for the first time, but still went to work.  I never quite felt close to 100% today either, but I worked again and just tried to speed the day along any way I could.  There’s no real benchmark for how fatigued I am, or how my stomach feels, or how my head hurts, or how my mouth tastes.  Don’t worry so much about my side effects, because there’s nothing anyone can do about them anyway, just don’t be caught off guard when I give sarcastic comments about how “I’m not dead”.

Oh, and I still haven’t lost my hair yet.  I’m getting sick of waiting and wish it would just fall out already.  My nurse said she’s never seen it stick around this long.

When half of your hobbies involve getting outside and moving, fatigue and forced rest can make the days quite boring.  Summer weather has finally arrived in Holland, which is what makes living in Michigan worth it in the first place, thus making it even more painful to be confined to the couch and out of the sun.  I’ve been trying to fill my empty schedule by reading, writing, and walking more, but it doesn’t seem to be enough.

Almost exactly a year ago, I just returned home from Ohio after finishing 4 triathlons in 3 days.  And I’m supposed to just walk more to keep up with that kind of life-balance?

On Saturday I had to get out and went on my first group ride of the year.  It was a large group of nearly 30, so the pace was high and there wasn’t much time to recover after the sprints.  I tucked into the pack and tried to follow wheels, which worked all the way until we hit Beeline hill and my lungs exploded and I got shot out the back.  Limit found.

Sunday brought the hottest day of the year (not really that hot), and I laid low most of the day, but still had the urge to get out while the weather was nice, so I headed to the lighthouse with my camera.  It’s refreshing how the temperature drops 10 degrees in the short 15 minute bike ride to the lake, and I sauntered along the pier for awhile watching boats come in and out of the channel.  Mostly coming in, as a storm was starting to brew over the lake.  It quickly gained steam in the hour or so I was out there, so I didn’t get to stay as long as I’d hoped.  But I did take this on the ride home:

I think my camera might weigh as much as my bike.

At work, our fiscal year ends on Friday, and because we can’t carry over any extra vacation days – use ’em or lose ’em – I worked Monday morning, and that’s it.  I had been saving them to go somewhere far far away earlier in the month, but I’ve sort of had to stay close to medical attention, if you namean.  After getting my blood checked again (this time just a finger prick instead of a needle in the arm), I went home early and, feeling recovered from the hard ride on Saturday, decided to join the Monday night ride that leaves from the aquatic center.

Anytime I have time for a 30+ mile ride ride, my favorite route is the “Hutchins Lake loop”.  And because it’s not dark until 10pm this time of year, we had more than enough light, and I set out with the medium paced group for the 40 miles the route requires.  Last year I could hang with the fast group, but I’m not ready to flog myself that much yet.  The route has a good combination of quiet roads, a handful of hills (relative to the rest of western Michigan), and changing scenery that starts with freshly planted corn fields, goes past fields of hay, maybe a blueberry farm or two, and then swings around further south by apple orchards and finally the Fenn Valley vineyards.

It’s probably not the same as riding through Napa Valley or Tuscany, but you know what, it ain’t half bad either.  The route then dips down around Hutchins Lake before heading back north past more corn fields and over Kalamazoo River in New Richmond.  More cornfields and the rest of the way home.

The group I was riding with went just the right pace, trading pulls nicely, and although it was clear there was a wide variety of experience among the riders, I felt comfortable, and I think if you looked back at me at any point during the ride, I probably had a huge grin across my face.  Even during the last couple climbs into town when my legs and lungs gave out, I was smiling.  It was truly the best I’ve felt in 2 months, riding along the asphalt with nothing but the sound of rubber on road and chains whirring around cassettes.  It was better than the ride on Saturday by an order of magnitude, and no matter how tired I was at the end, I was glowing.  I felt completely connected with my new bike, and I can cycle again!  (At least every other week after I’ve recovered from chemo.)

Tuesday showed up with more good weather, though a little cooler, and legs that weren’t too tired, so after bumming around all day watching cycling in the morning and going to the coffee shop and reading about cycling in the afternoon, I joined the Tuesday night ride that leaves from the bike shop downtown.

I had to eschew the fast group again and settle into the much bigger mild-paced group, which can sometimes be hit or miss.  There’s a lot of less experienced riders in that pack, and riding next to some of them makes me nervous.  Let’s just say there are people I avoid and actively staying clear of.

But, as always, riding in some sort of group is easier, and 35 miles later (different, less-notable-but-still-good route), I was just as happy as Monday.  A not too difficult ride just to get my road legs under me again and have the wind flow over my skin.  It will be awhile until I can really hammer again, but for now, I think rides like these will do.  It’s the best drug I know.  It’s therapy.

At the beginning of March, before I had a lump take residence in my neck, I ordered a new bike.  A custom fit, carbon fiber bike, which is damn sexy if I must say so myself.  After a few delays waiting for parts from Taiwan and the fact that I haven’t exactly been able to ride a bike for awhile, it was all built up and I finally picked it up last Thursday.  I had Friday off of work, and for once my legs weren’t wet noodles, so I went for my first ride it what seems like ages.

It took a little to settle into a rhythm and remember how to ride smooth, but I survived an hour on the quiet roads south of Holland, and only stopped because I didn’t want to push things too far.  I’ve never ridden a bike that jumps like that when I stand up to pedal.  I can’t wait to get out again, but Monday was my 3rd round of chemo, and I’m in no shape to do that right now.

It was also my first checkup with my oncologist, and I guess all things considered, everything’s going about as well as it can.  My bone marrow biopsy was negative, my blood work isn’t too bad except for my white blood cells counts, and the physical side effects of all the toxins I’m being fed aren’t as bad as they could be.  And I still haven’t lost my hair, but my nurse assured me, “this next dose will take care of that”.  The plan is to get another PET scan in about 3 months to see how much cancer has been killed, and until then, just to continue with chemo and recovery as normal.  I like to tell myself that my body is handling this all relatively well because I was so healthy beforehand, but I really have no idea if there’s any truth to that.  It just feels good to rationalize it like that.

I spent the weekend with family in Ohio for Lydia’s graduation, and it’s hard to imagine that my own college graduation was 3 years ago already.  Sometimes it feels like I haven’t done much growing up in that time.  All those existential questions that new grads face, I have yet to solve any of them.