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To start, go here and read the text of Jesus Montaño’s excellent commencement address he gave at Hope this past weekend.  Montaño has had a large impact on my life relative to the short amount of time I actually had class with him.  Life lessons he’s taught me (whether directly or indirectly) include how to be a better photographer, how to be alone and enjoy it, the importance of staying actively creative no matter what your day job is, and the theme of his speech: stories need to be told.

This is largely why I’ve kept a blog of some form for the past 8 years or so.  It’s why I share so many photos.  It’s why I tweet.  It’s why I share a lot online.  I enjoy reading the personal stories that others blog as well, and wish more people shared, but I realize that it’s not for everyone.  Some prefer to share stories over a beer, or on a road trip, or at a meal, or (ugh) over the telephone.  Some people are excellent storytellers in person but maybe not so great in writing.  A lot of people actively try not to share things online, which I can sort of understand, but that doesn’t mean I have to like it.

So anyway, here’s a recent story for you.

Most mornings in May I sit at my desk and watch the Giro in either Italian or English, depending on which feed wants to load best on that particular day.  I don’t know more than a handful of words in Italian, but it’s good background noise, and you can still sense tension in the announcers’ voices when things get exciting – my cue to make the tab with the video active and watch for a bit.  Other necessary tabs for viewing include a text ticker of the race, a chat forum/thread, Twitter, and a gchat window with Abe, who’s usually watching along with me.

On Monday, as stage 3 wound it’s way down a mountainside towards the Italian coast, I remarked to Abe how unsafe I would feel riding along in a team car following the race.  Tires squealing, brakes smoking, race and team radios blaring, riders needing spare food or a new wheel – driving in the caravan takes skill.  Down the mountain the riders in the peloton looked so much smoother, strung out it a single file line, able to use the full width of the road and lean there bikes into each corner, nonchalantly clipping the apex of each turn.  Only needing to fling their 16 pound bikes around each bend instead of 2 tons of steel, everything just seemed to flow.

No longer.

At one point as I shuffled between tabs and windows to check in on the video, a rider had crashed.  Filling the frame was the all-white medic’s car parked on the side of the road, doctors huddled around the rider laying on the ground.  Team cars gingerly worked their way around the situation to continue following the race.  The video cut to a shot of Wouter Weylandt laying on the pavement, unconscious, as medics were cutting off his helmet.  The shot couldn’t have lasted more than 5 seconds, but it’s burned into my retinas.

His jersey was fully unzipped, making it hard to tell who had fallen or even what team they were on at first.  But one thing was immediately apparent – something was off, and this was serious.  Blood was streaming out his nose and down his right cheek.  It came out in pulses.  And then whoever was directing the video production recognized the same and cut back to the front of the race, tactfully never showing Wouter again.

CPR was started immediately, adrenaline was given.  The medics couldn’t have been at the scene any faster.  And on Monday, Wouter Weylandt died with a fractured skull on a shady road in Italy, and I literally saw his final breaths and heartbeats live on my computer screen.  And it’s fucked up.  And I couldn’t function the rest of the day.

I went out for lunch, and sat alone and stared out the window and ate and shed tears for a cyclist I’ve never met.  My thoughts on mortality have certainly shifted dramatically in the past couple months.  Three weeks ago from Monday I was hunched over in my doctor’s office with a fever, struggling to simply breathe, nervously waiting to hear how I could be made better.  Going into the appointment, I was worried I wouldn’t start chemo until the next week, by which time I’d have the port in my chest.  I was more worried I wouldn’t even last a week – each day it was getting more and more laborious to breathe.  Luckily, chemo drugs were flowing into my arm less than 24 hours later, and I’ve been feeling relatively better since.

But on Monday, like every Monday for who knows how long, I had to get blood drawn, to make sure my body is still functioning properly.  I looked over my blood test results from last week again, and it’s frightening to see certain values and how low they are.  I’d misread it the first time.  Nine of the 16 values on the printout were flagged because they were out of the healthy reference range.  My white blood cell count is a number on a paper that reminds me how a slight infection could take me down.

Cyclists die around the world every day.  There are certain risks I accept every time I head out the door on two wheels.  We’ve all crashed before and continued to get back on the next day and pedal.  And maybe because of that, my imagination can fill in the gaps of what I watched all too vividly.  Wouter’s biggest career win was Stage 3 of the 2010 Giro.  He died on Stage 3 of the 2011 Giro at the age of 26, and I watched it happen.  It’s not supposed to be this way.

How many different ways are there to photograph tulips?  I’m getting kind of bored of shooting them.  Last year during Tulip Time I just used my 50mm and opened it as wide as it goes for some nice results, but as I walked around today with my 15-85mm zoom, I wasn’t very inspired.  Maybe it’s because half the flower beds have yet to bloom, or maybe I need the windmill in the background to keep things interesting, but something seems off.

The Giro d’Italia kicked off this morning, so instead of cheering on the 10k/5k runners passing by the street corner (it was an 8k last year, which I ran and got a cheesy medal for winning my age group), I was inside watching cycling.  After the stage finished, I swung my own leg over the top tube on my bike for my first ride of any kind in about 6 weeks.  I soft pedaled downtown to enjoy the weather, eat some fried dough, and people watch, and besides, I probably wasn’t going to find any parking closer than my driveway anyway.  Even pedaling the 2 miles to Centennial Park left my legs tired, heavy, and weak, comparable to what a 40 mile ride would feel like last summer.  But it felt good to move again.

I finally tore apart and rebuilt my computer, so it works and I’m not stuck feeling extra-isolated at home alone, which feels really good.  I can finally process photos again, and I’m hoping that the fireworks tonight don’t get rained out, because I then might capture something more exciting than tulips.

My doctor told me that my hair should fall out within the next week or so, but I’m not ready.  I think a lot of people with cancer struggle with body image issues, I just didn’t think that I’d be the one to be so nervous about losing my hair, especially considering the fact that as a swimmer I shaved every square inch of my body (except my eyebrows and what a Speedo covered) multiple times.  I guess it’s that this time, when I don’t have any hair, and it’s out of my control, the secret with be out, so to speak, and it’ll be harder to blend in with a crowd and pretend nothing’s wrong.

I have a slightly irrational fear that that’ll mean I’ll have to explain what cancer’s like to every acquaintance that happens to walk by and say hello, and to be honest, I really prefer to talk about anything but cancer if at all possible, especially if it’s someone I’m not all that close to.  I’m sure I’ll be over it all in no time, but it’s still an unexpected source of anxiety to wonder, every single day, when I scratch my head or play with my hair and think, “Is this the day my hair will leave me in clumps?”

I think I may just buzz as much hair off as I can tonight anyway.

The 2nd round of chemo hasn’t treated me nearly as bad as the first, but I’m still trying to figure out exactly how my body handles it all.  I’m fatigued, but not as bad as last time where I was mostly incapacitated.  I was very flushed on Tuesday and Wednesday, but I’m not sure why or how that all works.  I felt warm, but not feverish-warm, and my skin looked a bit like I had a sunburn.  It was slightly uncomfortable, but not painful.  The metallic taste in my mouth didn’t kick in until today, and hopefully will only stick around for a few more days.  So it goes.

Well, not all the time, but the few days after chemo it does – to the point where rinsing my mouth with salt water and baking soda is refreshing and a wonderful thing.  I look forward to it.

Anyway, last week was a good week.  Not a whole lot to update you on.  Plus, the PSU on my computer at home died and I’m still waiting for UPS to figure out how to leave a package of spare computer parts at my door, hence the lack of writing (and photos) lately.  I felt mostly on top of things, and aside from getting blood drawn on Monday, I didn’t even have any other medical related appointments.  I haven’t exactly been jumping around like a ball of energy, but I’m thinking maybe in another week I’ll be able to climb back on my bike and go for an easy ride.  Plus, it rained all of last week, so after coming home from work every day I felt validated watching a lot of TV.

I just got back from my 2nd round of chemo.  All the drugs got injected through the fancy new port in my chest, which was much more pleasant than an IV in my arm.  If things go roughly the same as last time, I’ll be tired as a dog on Wednesday, so we’ll see how I react this time.  I have plenty of DVDs and books and magazines to pass the time.

One more thing – I read through the printout of all my blood values from today (which they need to make sure they didn’t need to adjust my chemo dosage), and from my extensive reading of doping in cycling, I actually know what some of the values mean.  For instance, my hematocrit was 40.7%, which is a little low, and downright pitiful compared to cyclists who used EPO.  Just interesting to see how I compare.

Thursday was pretty forgettable.  I had to get up early to go in for surgery again.  Apparently, during the surgery to install the port in my chest on the left side, the mass in my chest has shifted things around so much that they couldn’t find the vein.  So they poked around a bit to see if the right side might work better, before going back to the left and sorting things out and getting the procedure done.  Just more places to be sore in.  I wasn’t put under general anesthesia for it, but whatever sedation they did give me was still strong enough for me to pass out, only to wake up again in the recovery room after everything was finished.

After getting home, I don’t think I moved much the entire rest of the day.  I don’t know how much of it was recovering from surgery and how much was chemo hitting me, but I had the energy of a drunk sloth on vacation.  Aside from the one time I started coughing to try to clear my throat and then I ran out of oxygen and seized a bit and passed out in my chair, spilling my drink all over me, I hardly moved.  At least my back/hip from the bone marrow biopsy was less sore so I could sit more comfortably all day.  I really hope I’m not that knocked down from just chemo in the future.

Not that I’ve been able to sleep in for awhile, but this morning I had to get to the hospital at 6:45am for an echocardiogram and cardiopulmonary test.  The tests were supposed to be done before starting chemo, but that obviously wasn’t possible.  It was nice to finally have some noninvasive procedures with no needle pricks, but testing my actual lung capacity on machine was a little depressing.  I know I get winded easily and can’t lay in certain positions that constrict my windpipe and apparently if I’m not strong enough to clear my throat with a few coughs I’ll pass out, but trying and failing to score well on my lung tests was sobering.  I’ve forgotten what it’s like to be able to take anything near a full breath of air.

At some point yesterday, while sitting in a recliner at the clinic with an IV delivering chemo drugs in my right arm, I tried counting how many needles have poked me in the past few weeks.  In the previous 12 hours, I’d had blood drawn twice from spots millimeters apart on my left arm.  I had an IV for the PET-CT, for my first surgery, and for my first CT scan, but the nurse missed my vein twice before another nurse stepped in, so does that count as 3 or 1?  And there were other blood draws too, but I only fainted the first time, but it should still count.

And for the bone marrow biopsy, I was lying on my stomach (with eyes closed for good measure – don’t want to accidentally catch anything in the peripheral vision), and I’m not sure how many needles they used for that procedure.  Frankly, I still don’t want to know exactly what it looked like, because I’m still a little sore, and because I know one of the needles was like 10 inches long.  So that needle should get a multiplier, right?

Anyway, I quit counting and just continued to let the chemotherapy fill my veins and get to work.  It took 3 hours to get everything in (4 drugs in total – ABVD for short, if you’re interested), but in that time I had some DVDs to watch with my parents and cousin, and the time seemed to go by pretty quickly.

I seem to be reacting well to the chemo well so far, after one day.  However, I’m told the effects usually aren’t felt for a couple days, so tomorrow could be a completely different story.  And bright and early tomorrow I have surgery to get the port installed in my chest, so I’m just penciling in a day of recovery now.  Other side effects take a bit to kick in.  I should still have my hair for another couple weeks.

I’m still in pain from the bone marrow biopsy (try to avoid getting one) I just had a couple hours ago, so here’s what’s new and what I learned today, briefly.

I had a fever on Friday night and Saturday.  It was pretty unfun.  It’s been getting noticeably harder to breathe over the past few days.  Apparently, in addition to the mass invading my lungs and my reduced-size windpipe, I also have fluid in my left lung.  My oncologist, noting this and my recent PET-CT scan results, scheduled me to start chemo tomorrow (through an IV, since I don’t have the port installed in my chest yet).  I’m so thankful we’re kicking things into high gear now, because honestly, I’m not sure what state I’d be in in a week without the chemo.

On Thursday, I’ll still have surgery to get my port installed, and then on Friday I have a couple more tests to get done.  Meanwhile, I’m tackling questions I never thought I’d encounter as a single 24 year old male, notably, “Will I be able to have kids?”

Overall, I’d say the past 3 weeks were probably the easy part.  I’m into the serious stuff now, kicked off with the bone marrow biopsy.  My oncologist, after finishing the procedure, said, “Just hope you don’t have to ever get one of those again.”  I found that humorous.

It’s been a slow week, but today was more exciting.  I went into work for 2 hours this morning only because it was on my way to Grand Rapids, where I had to go to get my PET-CT scan.  First, let me say that the cancer pavilion there is a beautiful building – the lobby was like a 5 star hotel – and I approve.  It certainly makes things more comfortable.  Also, instead of being in some basement room like at Holland Hospital (where I got my CT scan a couple weeks ago), the PET-CT scanner was in a corner room on the second floor with sunlight flowing in from all angles.

I had to get there early, because apart from checking my blood sugar to make sure my forced diet of zero carbs and sugars over the past 24hrs worked, I had to get the radioactive glucose injected into me, then sit for 90 minutes while it circulated throughout my body.  I was in a private room for all of it, and had a TV with a few channels to watch (but what’s ever on at 10am anyway?) and some magazines to flip through, but it was hard to not just stare at the wall clock.  I also had to drink another chalky barium sulfate contrast solution.

By the way, the PET-CT scanner looked something like this:Not exactly the full claustrophobic tomb I was expecting, so that was nice.  It’s really just a slightly thicker “donut” than a plain old CT scanner.  Another welcome surprise was that instead of the 30-60 minutes the information packet told me I was probably going to be in the machine, I was in and out in 15 minutes.

It does a normal CT scan first, complete with the injection of whatever other contrast stuff makes your veins feel all warm, then the PET scan part, which takes about 10 minutes, and it works in sections, spending about 2 minutes scanning each section before it slides the bed further back and forth for the next section.  During the scan, the radiological specialist/DJ put in the CD I brought with me, and somehow went straight to the last track (which was secretly what I was hoping to listen to), “Impossible Soul” (from Sufjan’s The Age of Adz), because it’s a 25 minute long track that allows you to lose track of time.  Indeed, I was out of there before the track finished.

On the docket for next week: I have my first appointment with my oncologist on Monday, where I have a million questions about chemotherapy that I want answered.  Then, on Thursday, I’m scheduled to go in for surgery again to get the port installed in my chest.  We’re crossing our fingers I can start chemo on Friday, but who knows?

My results are back from the biopsy – it’s Hodgkin’s lymphoma.  It’s what we were hoping to hear, because I’m told it’s probably one of the most treatable cancers.  I don’t really know a ton of specifics regarding exactly what classification of Hodgkin’s it is or what stage it’s at, but it’s good to finally have an actionable gameplan.  The next step is to get a PET scan, which will require a quick jaunt over to Grand Rapids because that’s where the closest huge claustrophobic machine is.  That’ll allow them to get a better picture of exactly which cancer cells are most active, so they can fine tune the chemotherapy.

Next, I’ll go back into surgery to get a port installed in my chest just below my collarbone, which will allow all those wonderful chemo drugs to go right to work that much quicker and easier.  Once that’s all rigged up, I should start chemo pretty soon thereafter.  It’s doubtful I’ll get into surgery this week, but early next week seems likely.

For now, I’m still just watching DVD after DVD after getting home from work, but right now I’m off to the hospital again to get some more blood drawn so they can test to make sure my kidneys aren’t going to cause problems with the chemo or anything.  Hopefully I won’t faint this time!

Get used to this game, the waiting one.  The results of my biopsy aren’t back yet, and won’t be until Monday or Tuesday, so I have nothing to report to you all.  It looks like I won’t be starting chemo next week either with everything getting stretched out scheduling-wise, so if you do know how to make test results suddenly appear, start working your magic.

In the meantime, I’ve been thinking back a bit, trying to remember if there were times when I might have noticed anything was amiss, like this reduced lung capacity I have.  Obviously two weeks ago when I was hiking in the Smoky Mountains I noticed I was stopping to catch my breath more than my friends, but even then, my first thought was naturally, “I’m more out of shape than I thought” not, “I bet I have cancer.”

Moving further back, throughout the winter, I kept a pretty consistent workout schedule, but always with an eye more towards accumulating base miles and never towards speed.  I probably averaged three days a week on my bike inside, and one day a week running outside.  I can’t say that I ever felt extraordinarily sluggish, but it’s hard to judge pace and effort on a stationary bike while watching TV or running outside through the snow without a watch.  Therefore, without pushing my limits in a race or training, I guess I never really used up all the air in my lungs.

However, back in October and November, I did a few cyclocross races, and, well, I really kind of sucked.  Like, 3rd-from-dead-last kind of sucked, and against people who I could easily beat in triathlons earlier in the summer.  Again, I chalked it up to factors like “I’m not good at technical bike courses” and “I’m riding a heavy bike that’s too small for me” and “Sprinting never was my specialty”, but now that I think back, I was sucking wind pretty hard during those races, and I definitely pushed myself to the limit – there was just no top gear to shift into while racing.

I’m hesitant to go back much farther, because I can only think of a couple really tough races where I was so out of breath I had to walk, but those were trail races over sand dunes and everyone was walking.

It’s just still pretty creepy to think that I have a softball growing in my chest.