Monthly Archives: August 2013

A Greater Victory To Have

After an evening of fighting traffic with my bike, riding hill repeats and cracking jokes with my Team In Training crew, then fighting more traffic on the ride back home…I feel like I’ve calmed some of the emotional chaos in my head from this morning and need to expand a bit on what happened today, if only because the cathartic release is very important to me.

But first, let me say thank you to everyone who responded to my blog post, instagram photo and facebook update. Your sense of anger, and even outrage, expresses to me that you actually care about my situation and are emotionally invested in it to one degree or another…and I appreciate that if only because it lets me know I’m not at all alone in this, which would be a frightening realization in its own right….because after today things got a lot more scarier for me than I anticipated.

But before I get into that, let me also clarify something else. I’m not happy with what went on with my oncologist today. I still think it was absurd that he let me come into the follow up meeting without even looking at my CT Scan and sending me away with no concrete diagnosis. If it wasn’t unprofessional, it was at least careless. But here’s the thing…I’m not mad at him. People make mistakes. I didn’t ever get the sense that he was being DELIBERATELY careless, just that, well, I slipped through his cracks, I guess. Honestly, I’m making the decision to give him the benefit of the doubt, because I just don’t think it would help if I would harbor anger towards him over this. The results of the CT Scan are not going to change, no matter when he gives them to me, so I’m primarily concerned with just alleviating my own emotional troubles more than anything else. Plus, this guy essentially saved my life. I mean, he’s the one who sliced me open and got me to where I am today, taking me off the precipice of a 39 out of 40 cancer score and to wherever I’m at now…still alive, at least. And finally…this isn’t a guy I want to lash out at. I want to always be on his good side, because I still believe we are ultimately going to end up having a second surgery down the line and the last thing I would want is a state of frustration or tension between as he cuts me back open. I want to be someone he LIKES. Someone he feels connected to and whose survival he feels INVESTED in personally, not just because it’s his moral obligation. So I’ve chosen to accept this as a frustrating, but not malicious or intentionally careless act on his part. I just slipped through the cracks of his workload is all and I’m just going to wait until the phone call rings through and I get a better idea of what is going on. I hope you understand where I’m coming from.

So now let’s talk about the fear that grew today. Because it certainly did grow. When my oncologist felt around my abdomen and expressed shock and astonishment at my progress, an initial wave of excitement crashed into me and I proudly patted myself on the back for any potential part I may have had in this development, but that feeling quickly subsided and then went crashing to the floor as he talked further. Because he said some very worrisome things…in a manner in which I think he didn’t intend. I think they were deliberately quieted thoughts that slipped out amongst his satisfaction, that gave a fuller picture of what I didn’t realize I was facing.

My interpretation is that he had a pretty poor outlook for my surviving this ordeal. And that scared me. And when he realized that maybe things aren’t so dire as they were, he was more comfortable juxtaposing the current POTENTIAL good against the previous bad.

“I did NOT expect for you to have progressed like this. Honestly, I was expecting MUCH worse. I did not expect your belly to be like this.”

Ok, well, that’s good. Except, why was he expecting much worse? It sounded to me like he was expecting either no progress or even regression. But I shocked him…so good…but…

“It seems to me an indication that you are responding to the chemo. This seems like the chemo is working. These tumors usually don’t respond to chemo.”

Yeah? Great. So, this extended chemo treatment plan was more a shot in the dark, a long grasp of hope, instead of a definitive plan of action with predictable results? I wasn’t comforted…my fear grew.

“Of course, this progression may be residual from the heated chemo we gave during the treatment itself.”

And that one really got me…because it means this chemo treatment plan, that seems to be more of a shot in the dark than anything else, may still NOT be working, but that my regression is from the previous treatment during surgery and as time passes this slow growing cancer may prove to actually STILL be growing despite this initial encouraging diagnosis. The waiting game will keep waiting.

“Truthfully, I didn’t think it was going to be worth it to go back in, but now we’re going to reassess your situation.”

Ok….you REALLY let that one slip doc. And that one scared me the MOST. Because it says to me, after opening me up and seeing the extent of my cancer, he didn’t think I had a chance of living to the point where we even do the second surgery that was part of the plan given to me. Now, I know this second surgery was reliant upon the chemo treatment even working and shrinking the tumors, but now it sounds like that was just a total shot in the dark….and it may STILL not be the successful treatment we think. And that scares me…very much. Because until we get a better idea of what is going on, which will only be determined by more scans down the road…I may still be on a course towards a tragic end.

So yeah, I’m a little more scared now. Or maybe more than a little. Because now I know what the doctor really thought of my potential, and although part of me wished it was protocol, law even, for a doctor to give you the straight story….I understand why they don’t. I mean, my doctor has always been hopeful and positive about my situation…to my face anyways…because the positive potential is ALWAYS at hand, and imagine the alternative. Imagine if he said to me,

“Well, during surgery we found a troubling amount of other cancer tumors that need to shrink before we cut them out…and that’s going to require an extensive chemo treatment plan…but success rates show that these tumors don’t really respond to the chemotherapy we have at our disposal…so we’re probably not even going to get to the point where we do a second surgery…and we’ll just have to determine how long you have to live.”

I mean, IF that’s really what was going on in his head, how do you just come out and say that to a patient? Weaker individuals might commit suicide before even giving it a fighting chance, right? So, as the book I’m reading so painfully, but truthfully puts it, doctor’s often only give “truth in small doses”, so the patients can handle it and process it, because honestly, what I’m SLOWLY learning, is that the truth about cancer and treatment is not all that pretty, not all that hopeful. It’s sad. It’s tragic. And it’s downright frightening….because we have a long way to go in “curing” cancer. I’m fortunate to exist in a time with medicines that MAY have a decent chance of raising survival rates and that is well beyond the days of shoddy surgical procedures, but I’m also a little less fortunate to live in a time that still has us feeling blindly in front of us for ways to cure cancer without obstacle. And that’s scary.

But you know what…so what. I’m scared, yeah. In part because I’m still waiting for the full picture of my circumstance to paint itself out for me, but also because my oncologist said a lot more in his inadvertent slips of truth that gave me a great sense of encouragement. There is VERY MUCH the chance that I happen to be one of those that DOES respond to the chemo, for one reason or another. Maybe, despite my cancer mutating and growing in my body for whatever reason, maybe my lifestyle prior to diagnosis has a significant impact on my healing. Maybe my continuation of strength building, healthy eating and active living is enabling the chemo to work in ways that it doesn’t in others. Maybe….just maybe. And I don’t know really…but I only have one option at this point, to keep keeping on. To keep doing what feels right to me and hope that, even without extensive evidence to draw conclusions, that I’m doing something right to keep my cancer at bay. I don’t know…and I don’t know if I’ll ever know, but I’m going to keep living my life, doing everything “right” in a way that speaks to me…just in case. If nothing else, living a life of quality helps to quell the fear that might consume me should I let it…and although it may be there…I don’t plan to let it own me. I’m still counting on beating the odds and experiencing a complete remission. And I plan to keep surprising my doctors, forcing them to regret the story they wrote out for me before I had written any of it myself.

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An Encouraging Letdown

I’m too emotionally chaotic right now to formulate a cohesive narrative or creative representation of what went down this morning with my oncologist, so I’m going leave my apology there and simply try to narrate the situation as best I remember it.

————–

I sat in the waiting room with my dad, the painfully quiet waiting room, where the couple of other patients whispered as softly as they possibly could, though the others could hear them as if they were talking at full volume. My dad sat next to me, legs crossed, scribbling away at his Sudoku puzzles like he always does (I think he’s probably at professional status with those things by now), and I sat adjacent, my head buried in my latest book on cancer (The Truth In Small Doses..please read it), trying desperately to keep my nerves at bay. My feet tapped the floor. My finger twitched on the back of my book uncontrollably. My heart didn’t just beat…it pounded, in the way it does when my nervousness reaches its peak just moments before any race I’ve ever run. I took a couple deep breaths and focused as hard as I could at the words on the page, trying to lose myself in the story instead of the news that waited me on the other side of the office door.

I flipped page after page and almost as soon as I finished the last sentence in the chapter, the door opened and I was called into a back room. I assured my dad I would call him in soon and headed back. I went in alone this time. I wanted to face the verdict by myself…without any distractions or considerations other than the words coming out of the doctor’s mouth and my own uninfluenced reaction. And I didn’t know what that would be exactly. I wasn’t sure if I would calmly nod my head in acceptance, crumble like a collapsing building that just had it’s support beams exploded beneath it, yell out in triumph…or…something else entirely. I don’t know…this is unlike anything I’ve had to experience, so I resorted to my safest strategy, minimizing. I minimize everything. Take away all influence except what is absolutely necessary and let honest prevail.

I sat in one of two chairs resting next to each other across from a shortened exam table as the receptionist informed me that my doctors Resident would see me first and then he would come in. As much as I DIDN’T want to hear that, I knew this would happen. This has been the routine since day one and I’ve come to expect it, to wait for the resident to come “practice” on me. I mean, this is how knowledge and experience accumulates, expands, grows comfortable with itself, but it feels weird to have my mortality as a practice scenario for another doctor in training. I’m about to face down the biggest news of my life and this guy gets to use me as another relatively careless notch in his belt on the way to becoming an “official” doctor. And all that is one thing, but to have him talk to me about my scenario even though he had NO IDEA what was going on is another.

He talked to me about my treatments up to that point. He talked to me about my activity levels as he frantically typed away on the computer, his head somewhere else, evidenced by repeating my answers back to me COMPLETELY WRONG. No sir, I’m not training for a triathlon. I’m just running and riding my bike. Then he asked me about my “score”. I had no idea what he was talking about.

“What’s my score? Like…the stage of my cancer?”
“Yes.”
“Oh…I think it was stage 4. At least that’s what I saw on my forms later on.”
“Yes…you’re score was a 39…which is high….out of 40. But these types of cancers are often found in their later stages.”

I knew this. I didn’t care about this. This was water under the bridge. I wanted to know if the tumors were SHRINKING OR NOT. That was the whole point of the follow up appointment.

He then asked me about my CT Scan.

“Have you seen the results? Have you seen this report?”
“Well…no. It was my understanding that this is what the appointment was about today. To find out what my CT Scan showed.”

He then handed me a report from my file, that talked a lot about “significant tumors around the liver”, “Scalloping” and other terms I had heard in the past. That’s when I started to understand the disconnect in our communication. He was looking at the scan from right after my surgery. This was NOT the scan I just had two weeks ago and from what I could gather, he didn’t even register that after I just told him as such. He was obviously consumed by the formalities of this practice session as he continued to type away on his computer. Soon enough, thankfully, he ended our session and headed out to get my REAL doctor. The one who ordered my Scan in the first place. The one who would actually have my scan, that wasn’t in my file, that knew what was going on and would finally tell me the news, good or bad, that I came for.

But first, to avoid any further confusion, I brought my dad in from the waiting room. How I handled the news didn’t matter anymore…I just wanted to be sure any confusion that might come up was addressed with an extra set of ears. I mean, if anything was wishy washy about this, I needed the help in wading through it, because this wasn’t about how to get meds from the pharmacy…this was about my damn mortality. I didn’t want to second guess anything I heard.

Not long after the resident left, my oncologist walked into the room with a bright demeanor, a pleasant smile on his face and his trademark bowtie resting just beneath his neck. A brief wave of relief washed over me, if only by his presence and not even considering his physical mannerisms I subconsciously registered. I hoped for good news, but knew this could be a protective measure, covering the blow, killing with kindness.

And then…well…a conversation started that didn’t hold much of a cohesive storyline and I only retained bits and pieces of what was thrown at me. He asked about my activity level. He asked about pain and problems with eating. He suggested ways to minimize the discomfort in eating (things I’ve already been doing – small portions, less fiber, smoothie/blended meals) and then he asked to see my scar. Pleased with how it healed he had me lay down on the examination table to conduct a light physical assessment of my abdomen. He pressed in a couple areas, laid his cupped hand on my stomach and tapped hard with his other hand making a muffled thump.

Then he expressed something close to astonishment, at the healing and minimized distention in my stomach.

But he had not talked about the scan yet. The only thing I cared about.

Then he said a lot more, in little bursts, that so much could be read into. He repeated his astonishment over and over, which offered me great encouragement….but then said other things that left me reeling.

“I’m incredibly surprised at the progression you’ve made. I sense almost no distention and I can tell already that the chemo is working. This is NOT what I expected to find. To be honest, I expected your stomach to be in much worse shape than it is…which tells me your responding to the chemo.”

But then…

“These tumors don’t often respond to chemo at all.”

and

“Now, this minimizing may still be residual from the intraperitoneil (heated chemo) chemo we did during the surgery, but we’ll have to wait and see.”

and then

“Honestly, this is really great. I’m so surprised by how your stomach feels and this tells me something is working.”

but

“These cancers don’t really respond to chemo and I didn’t think it was going to be worth it to go back in (conduct the second surgery)” – which to me I interpreted as – “I was pretty sure this wasn’t going to work and that second surgery we said you would get to was just wishful thinking and you were going to die before that”

But..but…but…..WHAT ABOUT THE SCAN I was thinking to myself. And then he came out with it..

“I haven’t seen your scan yet.”

Internally my mouth dropped and I screamed out, “WHAT?! This is why I came here today! You’ve had the results for two weeks now…and you HAVEN’T LOOKED AT THE SCAN?!” All that encouraging news, all that surprise at the healing and progression and POTENTIAL minimization of tumors and astonishment at the chemo ACTUALLY WORKING (are we taking huge shots in the dark here?)…those all meant nothing to me. I WANT THE EVIDENCE. I want you to look at the scan and tell me what’s REALLY happening. The 10 to 20 second feeling around my stomach, no matter how skilled you are, is not sufficient enough of an exam to allay my fears right now.

He kept his pleasant demeanor, but I could tell he was fumbling to justify not looking at the scan before I came in, alluding to being so busy and “things coming up” that he just couldn’t get to it. And that’s when my dad chimed in….with a reservation in tone that I knew took quite an effort to conjure,

“So, do you know when you can tell us when you’ve looked at it”

And with that he promised he would look at it TODAY. And assured me that after taking a look at it he would give me a call to discuss what he found, but he may not get to calling me back today, but he’ll try this week, and then, after crossing his fingers in front of his face, quickly backpedaled and said, “If nothing comes up and gets in the way.”

With that…I don’t even know what was said further, if anything. He thanked us, left the office, and left my dad and I sort of frozen in our own sense of astonishment. I mean, did that just happen? I spent the last two weeks both dreading and anticipating this meeting to get SOME sort of clarification on my life from this point on, but instead of any sort of relief or resolve, I’m left to continue hanging in the balance because he never looked at the CT Scan? REALLY? Now, don’t get me wrong, I’m not saying this was a deliberate act of carelessness, or to imply that my circumstance outweighs anyone else’s, or that my doctor isn’t a very busy individual, but hell, if you’re not prepared for a meeting with the basic piece of information the meeting is predicated upon….at least reschedule. I stepped into his office with an incredible sense of concern and walked out no less comforted, and no more knowledgeable. I’m more confused than ever…and this is not what I want.

I mean, to be given a sort of encouragement by his astonishment at my progression is one thing, but then there was his, maybe inadvertent, admission that he didn’t think the chemo was going to work in the first place, and that the surgery I’ve been looking towards (with equal dread) as an endpoint was also being looked at as futile, and that maybe the chemo ISN’T working and this is just residual from the chemo given during surgery…and…and….well shit. I don’t even know what to think or feel right now.

I JUST WANT TO KNOW WHAT THE SCAN SHOWS.

And before I get too wrapped up in my chaotic swirl of emotions, more than I already am, I’m just going to leave it here. I’m going to mark this meeting as an unexpected, frustrating hurdle in this race and wait for that phone call. I only hope my disappointment wasn’t masked completely this morning and he is compelled to make it a priority to call me this week and alleviate my concerns and considerations. It goes without saying I’ll update this blog when I find out just what the scan reads. Until then, I’m going to continue on unabated…and go for a good, sweaty bike ride.

The Coming Storm (or Sunrise)

Wednesday I meet with my oncologist to find out if the chemotherapy treatments are working, if all these aggravating side effects have been worth it, if we keep pushing ahead unhindered or re-evaluate our directions and change course.

And a part of me has never been more reluctant to face something head on. I want to keep living my delusional life where I’m riding centuries, running further and faster, and building my body stronger and stronger as if nothing is wrong at all. This is worse than taking those algebra tests I never studied for. Worse than breaking up with girlfriends. Worse than standing in front of a judge. Way worse.

So right now I’m just trying to keep from thinking about it, which is NOT easy, of course. I can’t help but run through a few scenarios in my head, where I’m told everything is going as planned and the tumors have shrunk, letting a wave of relief wash over me. And yet, conversely, I can’t help but consider the alternative too, meeting my oncologist’s poker face and serious eyes as he tells me nothing seems to have changed and this is indicative that the chemo isn’t working and that we’ll have to start taking shots in the dark.

I’m not counting on one or the other, but when I think of the latter scenario an emotional weight comes down upon me with great force. I can’t help it. I can’t fight it back. I get angry. I want to drop my head, punch the table and lash out at…nothing really. I just hate having to face this, having to deal with this as an adult, having to take stock of everything I’ve built in myself up to this point and come to terms that it may be cut abruptly short. I think of all the time and effort I put into educating myself, overcoming ridicule and harassment, building a greater and greater self-esteem, transforming my body into a powerful machine, and feel a great sense of pride in how I’ve worked my way through the obstacles of life to come out on top, by my terms…and then to have to deal with this.

Adulthood was supposed to be liberating. It was supposed to be about everything “getting better”.

But now I look at the young kids out with their parents on a Friday night and I envy them terribly. I want that innocence again. I want to jump out of bed as soon as I hear the other kids playing outside and jump on my bike to join them, neglecting breakfast and a decent tooth brushing. I want to feel that excitement when a friend and I plot to convince our parents for a sleepover. I want to be taken out for pizza and soda, then back home for movies. I want to anticipate my sister’s family-famous carmel popcorn again. I want to worry about nothing on the weekends except getting out of exploring the neighborhood woods in time for dinner. I want so much of that innocence before the increasing responsibility of adult problems creeps in and consumes our growing lives.

Of course, I’m just reacting to the weight of what I have to face now, and these longings are mental safe spaces, memories that completely contradict the reality I’m experiencing, the inevitable responsibility of being an adult. Still, that doesn’t make this any easier. Nor does it change the verdict on Wednesday and how I’ll proceed from then on, which, admittedly, may be triumphantly positive all the same, but until I walk out of that office with a new understanding of my life from then on, I know this is unavoidable and simply have to wait it out.

And that’s all one can really do…just wait…and, in my case, stay as distracted as possible to keep the weight of the oncoming storm, or release with the waking sunrise, from leaving me paralyzed in anticipation.

Running Scared (The Cancer Version)

Let’s talk about running….because, finally, THERE’S SOMETHING TO TALK ABOUT!

I don’t know what happened to me physically, whether it was the cumulative effects of my consistent bike training or if I just “flipped the switch”, but suddenly I’m stronger and more able than I ever have been since surgery. And IT. FEELS. AMAZING. I can’t even convey how normative I feel being able to get up every morning and do something physically strenuous and rewarding, then be excited to get up and do it again the next day. Again, I don’t know what happened, but it did and that’s all that matters.

It started somewhere before my son arrived last month when I was riding 20, 30, then 40+ miles each day, and although I would still get incredibly winded on any minor incline, I was able to continue on and finish the rides. Then each day of our vacation out East began with another long bike ride, sometimes cresting bridges that rose at such a degree that I thought all my muscles had gone into oxygen debt at the top and I was about to fall over…but…but then each day I found myself getting over the bridges with a greater ease. Something was changing within me. I was getting my lungs back.

Feeling quite encouraged by all that, when my roommate suggested we ride to Bloomington, Indiana, 60+ miles away, I jumped at the chance, though I was sufficiently worried that I was going to get clobbered by the hills and my lungs would near explode halfway up. I told them to go ahead and I’d meet them there, so imagine my surprise when I was able to top out every hill without even thinking of putting a foot down, and then continue on. Something had undeniably changed. And although I didn’t make the whole trip the first time, the second was euphorically successful (scroll down to the previous posts to read all that).

That’s when it REALLY hit me. The switch had flipped and my body had turned on,

“I bet I could go for a run now.”

Granted, I was still very worried about the dejection that might follow should things still be so compromised that running was STILL out of the picture, but there was only one way to find out. It took me so long to get to that point from past runs I had attempted, where although the hour long trail run I deemed a success was encouraging, it was only later that I realized the all-powerful numbing effects of Vicodin actually made that possible, because it was only a couple weeks later that I tried to run 2 miles around the block when I only made it a mile in 8 minutes before I had to walk/jog the last mile just to get home without collapsing. It was a punch in the gut. And I didn’t dare try again until I knew things would go a little better.

So I suddenly found myself stepping back onto the familiar treadmill at my local Y (thanks to all that donated and allowed me to get my membership back!) and pushing the bright green “GO” button. And so that’s what I did. I went. And kept going. And…well….I COULD BREATHE! My heart rate hadn’t skyrocketed at the 8:00 pace I had set the treadmill to and when I hit 1 mile everything was still completely manageable. I could take deep breaths and feel my lungs inflate fully, where before they would get about halfway and then just give up and deflate in the face of the effort, leaving me reeling for breath. But not now. They inflated fully and I exhaled slowly, my legs kicking over and over, beating out a familiar rhythm on the spinning rubber belt.

I was whole again.

If there was any missing puzzle piece of my life that kept me feeling at the mercy of cancer instead of the other way around, my inability to run was it, so to put this piece back in its rightful place is a victory I can’t even begin to describe. And it happened to suddenly that I’m still processing it all, yet feeling on top of the world all the same.

But one run is just one run. To make sure it wasn’t a total fluke, I went back to the gym the next day and ran 2 miles again, with just as much ease as the first, almost convincing myself to keep going once the machine ticked over to 2 miles, but knowing I was still muscularly weak in a number of running muscles, I played it safe and cut the run off. But ever so slowly, I’m now building. The next day I ran 3 miles at 7:30 pace. And today, well, today I ran OUTSIDE. SHIRTLESS. And for a full 4 miles that felt a little more difficult than I had hoped, except then I realized I was dropping 6:45 miles and finished the entire run under 7 minute pace without really trying.

And so here I am again, working to shrink the ratio between cycling miles and running miles, tipping the scales back towards my running identity, erasing that ridiculous looking cycling tan, and preparing for the Adirondacks Ragnar Relay with 11 of the most awesome vegan runners to ever run that event. And although my next infusion is this Tuesday, the fourth of 12, and although all this leads to another body destroying surgery down the line, for now I’m myself again. Building and building. Stronger and stronger. Faster and faster. And it feels AWESOME.

And yet (yeah, there’s a catch), I won’t hide that I’m running scared. I had my first CT scan this past Wednesday. I refer to it as my, “Let’s see if the chemo is working” CT scan, because that’s what it is, and on the 28th of this month I’ll sit down with my oncologist to get the results. Now, one part of me thinks,

“It HAS to be working. I mean, damn, I just rode 120 miles! And I’m running sub-7 minute miles now! And I feel almost as normal as pre-cancer, so how could it NOT be working?!”

But another part of me says,

“Remember. This means nothing. You can be this physically fit and the cancer can still be growing, can still be taking over your body and plotting it’s next attack. After all, you were running 30 trail miles just days before diagnosis, when things were REALLY bad.”

So yeah, I’m not going to say I’m not scared. I’m not so scared that I’m emotionally crippled, mind you, but I’m also not going into this meeting expecting high fives and NEC reports. I’m going to go in with weak knees and sweaty hands, hoping that the poisons are doing their job and we can keep going as planned until this whole pile of absurdity is dead and gone.

But until then, well, there’s nothing else to do but continue putting one foot in front of the other, quicker and quicker until I either hit the wall of my own physical limitations or cancer mountain bursts from the ground in front of me again. I’m hoping for the former, but know not to rule out the latter. Not until my oncologist gives me the green light.

And you can bet that when he does, I’m going to take off from the starting line with a violent pent up force. For now, however, I’ll see you on the roads, whether on my bike or on my feet…always moving forward.

Onward and Upness

With each passing chemo treatment a new side-effect either makes itself known or others become exaggerated, and yet with each passing day I feel stronger and stronger, more like myself than I ever have since surgery.

Myself and four other spandex slathered friends hopped on our tuned-up bikes in Indianapolis and pointed ourselves South towards Bloomington, Indiana, approximately 60+ miles away for a round trip bike ride of 120 miles…farther than I had ever ridden before. Starting out down our street one of my friends who is a little less experienced at tackling this sort of distance confided to me,

“This already seems like we’re going too fast.”

I agreed, but knew the initial child-like excitement would subside as we worked our way out of town and onto the rolling country roads of Southern Indiana. Of course, I didn’t take into account the inherently competitive, one-upmanship nature of the more experienced cyclists in the group who took turns chasing each other down when one got away or simply pulled our pace line stronger than I normally would have ridden. Granted, I told everyone I was justing wanting to get from point A to point B, but my own competitive nature had me instinctively trying to keep pace when I had drifted off the back, the cardio sapping effects of chemotherapy really working my systems on the inclines.

We rode onwards, passing my normal rest stops and doing what groups of cyclists normally do on Century rides like this, held tight to each other’s wheels, made fun of each other, and, in my case, worried what was going to happen to my body deeper into the ride as the effort started to wear me down. Still, we continued on, tackling hill after hill, going into oxygen debt as we entered the short, but abruptly steep, climbs deep into the Yellowwood state forest. I continued to drop off the back from time to time and then either caught up with the crew or they waited for me to catch up. In any normal circumstance I would have felt like a total drag on the group for having them wait for me, but it was pretty much established from the beginning that I was pulling a cancer card this entire ride and that they had the option to wait for me at halfway for lunch or just wait for me on their terms. Admittedly, I was grateful to keep having their backs in sight to ride after…though probably a little faster than I had wanted.

Eventually, we rode into the college town of Bloomington, sat down for an awesome vegan lunch at The Owlery and then inwardly, then outwardly lamented the 60+ mile ride back on empty legs and full stomachs. Still, when it was asked if any of us wanted to back out and get a ride, I snapped at them all,

“Oh hell no! No one’s backing out. If any of you back out, I’ll kick your ass and then my cancer will kick your ass!”

Fortunately, no one was planning to call it quits anyways. So we started on the way back out, trying to spin the fatigue out of our legs and get back into a rhythm.

For me, though, my quads had isolated spots of weakness that just wouldn’t go away no matter how far I continued on. Each hill took it’s toll and even the three big climbs that were now magically transformed into tear-inducing descents didn’t offer much relief. One of my friends dropped back and hung with me as the others continued on to another meet up point outside of the forest canopy. We rolled and rolled over the hills at a much more leisurely pace, the sweat dripping down our faces and soaking our jersey’s in the now intensely hot afternoon sun, and finally made our way to the meet up spot where our friends sat with a jug of water.

I collapsed on the bench feeling a bit spent, but also….weird. Cancer weird. It’s a hard feeling to describe, but it’s a general feeling that something is just “off”, even if I don’t fully recognize it at the time. Hoping it was just the heat I finished my bottle of water, to no relief. Thinking maybe it was glycogen depletion I took in a caffeinated gel with some more water, to, again, no relief and a general gross feeling in my stomach. I waited and rested, hoping the feeling would pass, but nothing came of it and I was feeling desperate. It got so bad that I tried the ol immediate sugar trick and bought myself a Pepsi…a Pepsi!!….I haven’t had one of these in probably 15 years, but thought I’d try and replenish my system with some straight sugar, but even that didn’t help. Finally, I called it,

“I’m done guys. You go on ahead and I’ll call for a ride back to Indy.”

They double checked with me to make sure I was ok, but eager to get back to riding after a long break, they were soon back on their bikes and headed North to finish up the full 120 miles. I sat there dejected at 90, feeling like total crap and not getting any better. My ride was on the way and I had time to kill, but suddenly my bowels alerted me to the need to go to the bathroom. I went inside the grocery store to relieve myself, with only little success, and then I carried out a familiar routine. Go outside to sit, suddenly have to go to the bathroom, and head back in…over and over and over. It was only the fourth time in, after I’m sure the clerk was fully annoyed (and freaked out) by me, that I went to the bathroom. Completely. Like my stomach had dropped out or something. It was then I realized that I hadn’t had a full bowel movement in two days, undeniably a side effect of the chemotherapy drugs I had been taking, and so on top of that I added a full lunch, then water, then energy gels, then a Pepsi. Finally, my body couldn’t take it and forced everything out….which was a TREMENDOUS relief. If you’ve ever had medicine induced constipation, then you understand the relief is akin to being born again. I went back outside to wait for my ride, but a part of me wanted to call them off and get back on my bike to finish. The concern of overdoing it in the face of cancer treatment kept me in place though and I resolved to being driven the last portion of the ride into town before meeting up with the rest of the crew who rolled in not too long after I arrived.

And that was that….sort of.

I’m a competitive athlete, and I wanted to complete this ride in the face of cancer, just to beat it for the day, but in a way I didn’t. Cancer stopped me before the finish line, even though I got so far, and knowing myself, I knew that it was going to eat at me and eat at me for a long time to come….until I completed the ride. And the thing was, I KNEW what beat me. It was the constipation, NOT a lack of strength, so the fire that pushes me on was immediately roaring up inside to try again and I knew I had to jump at the chance as soon as possible or carry that feeling of dejection until I tried again.

2 DAYS LATER

My alarm smacked me in the face at 5:15 for a 6:00 am departure, both looking for an extra hour under a cooled sky and hoping to catch some beautiful sunrise views behind the cornfields in the country. I drank a cup of coffee and took in an easily digesting smoothie to prevent any potential stomach issues. It was my first day of a week break from taking Chemo pills, which was an encouraging way to start the day, but I’m not gonna lie…I was worried about the ride.

I was going for it. 120 miles. Solo. Without anyone to pick me up and only one person knowing that I was heading out to even do this. But you know what….sometimes you just KNOW when to go for it, to strike when the iron’s hot. I knew this was my best chance. But again, I was worried, though I managed to calm down by reminding myself that all my best races were run when I was scared to death, because that fear is a product of WANTING to succeed and NOT wanting to fail…and that fear can take you much further than you initially imagine.

And so I rode through the deserted, darkened streets of downtown Indianapolis, before the commuters had started flooding the roads. The sun hadn’t even begun brushing the sky and my bike lights blinked out distress signals to any motorists in view. Soon enough I made it past the end of suburban development into the 1 lane road as the sun broke the horizon, my blinkies became useless, and the commuters started whizzing by me. The road South that was nearly empty on the weekend was now quite crowded, but the drivers must have properly caffeinated as I encountered no errant drivers, bad attitudes or anything of the sort as I continued working past the cornfields.

The stellar views I hoped to catch didn’t disappoint as the cornfields rested under a blanket of fog and I was compelled to stop and take a few photos for documentation sake. The air was cool and I rode at my own pace, cancer pace, making my way South feeling strong and at ease. It was an encouraging start, but I knew the work would come when I got back into the forest, met the afternoon sun and took stock once I reached my past 90 mile breaking point from 2 days prior. That was my hurdle. I knew if I could make it there and still felt good that I could push all the way back into town.

I entered the hills of Southern Indiana without issue and turned onto the back country road that snaked, climbed and dropped all the way to Bloomington, this time almost completely devoid of traffic, as if it was laid out for ME today. I was completely alone and completely at ease as my legs spun in circles down the road at a pace I felt sustainable. I casually, but quickly, made my way into the forest canopy, stopping once to move a turtle off the road, and sprinting to leave behind a fiercely protective dog that briefly gave chase.

I made it into Bloomington and rode to my favorite coffee shop for a quick shot of espresso before getting back to business, only to find it unexpectedly closed. I settled for a 10 minute stop at a bagel shop for the caffeine fix, completely bypassing that potentially treacherous lunch meal, and hopped right back on my bike to ride the hills out of campus and back into the country. I left Bloomington feeling quite good, but wondering if skipping a larger meal was going to leave me a little underfueled as I neared Indianapolis. I thought it best to take my chances.

I continued to ride the hills with ease, tucking hard and hitting frightening speeds on the biggest descents, continuing to tell myself,

“Just make it to Bean Blossom. Just make it to Bean Blossom and you’ll be fine.”

And surprisingly quickly that’s exactly what happened. Without even a hint of fatigue or stomach issues I rolled by the point that took me out last time and kept going, giving a rolling finger to cancer as I pushed on to the next town that would mark the end of all the hills and pull me into town on a long flat stretch of country road. Making sure I was fueling as much as possible I continued to take down my electrolytes, glycogen chews and clif bars when necessary.

On a rough stretch of road between towns I concentrated on spinning smoothly and continuously, pressed up against the shoulder to give enough room for cars and picking my way to the next stop for a water refuel. I was enjoying the harder effort as I ate up the distance when suddenly a car sped by noticeably closer than others and a shower of ice cubes sprinkled the road in front of me. It took me a second to realize what it was, but when I looked up I realized the driver had tried to throw out the contents of his cup at me, in a state of extreme anger and frustration that, I guess, I even had the gall to be out on the road in the first place. I hadn’t even experienced so much as a middle finger that day, so this gesture took me by surprise, but as they sped away and I continued to pedal on, the moment passed immediately as I was so consumed by the good time I was having and the expected success of completing the ride. Someone else’s shortcoming was in no way going to ruin what I had going on at that point.

I made one more quick stop for a water refill and pointed my bike North for the last loooooong stretch of country road into downtown Indianapolis. I found myself pulling on my water bottle more and more as the afternoon sun took the temperatures back into the mid-80s, but the cooling breeze killed any performance sapping effects of the heat, allowing me to press all the way into urban traffic before completely running out of water. Admittedly, I started feeling a greater fatigue in my legs when I hit town and although I was so close, it took finishing off my second Clif Bar to get the last bit of energy to ride home. I continued to take my time and just enjoy the feeling of knowing I was going to complete, when suddenly I started to get overcome by a light-headed feeling and small dose of nausea. It was a good thing I was just about 10 blocks from home, because things were starting to head South for some reason, probably dehydration.

And then I was back at my front door. Feeling triumphant, on top of my own personal world, and as if I had punched Cancer right in the face.

ONE DAY LATER

My legs feel light, but not depleted. Everything else feels as strong as if I hadn’t ridden at all and all I can think about is getting on the treadmill and trying out my running legs again, something I haven’t done in a long time. The Hand and Foot Syndrome associated with my chemo side effects has prevented me from even trying, but as I continue to pass each chemo treatment and feel stronger and stronger, I’m dying to try ’em out and see what happens. Also, I think I committed to running as part of an all-vegan team at the Adirondacks Ragnar Relay at the end of September, and so I should really build up those muscles along with my cycling muscles.

And so for now, I’ll just leave it at that. This ride was huge to me and it feels like I overcame a huge physical, emotional and mental hurdle on my way to keeping my life through cancer. But I’m not done yet…not till I’m back running again. I make no guarantees on that, but at least it’s in my sights.

Onward and Upness friends.

Not Yet Cancer, Not Yet.

It’s my birthday. 37.

A few days ago I felt compelled to write a jaded, dejected, frustrated, throw my computer across the room angry sort of post. I wanted to write about how mad I was that cancer stole this day from me, this day that has grown in importance with each passing year, harboring a value of living that outshines any enthusiasm I had as a young kid more anxious to open presents than to celebrate my existence. I made that leap from selfishness to selflessness back in August of…well…a year I won’t say, though I assure you the statute of limitations is up. I did something that birthday I was, and am, incredibly proud of, no matter how illegal, that for some reason gave an importance to my birthday I hadn’t internalized at that point, that took me from my jaded “who cares, it’s just a day” 20’s to my more nuanced “life is pretty frickin rad, let’s do something awesome” 30’s. And with each passing year I did something important or valuable, to me, on my birthday. Sometimes it was just a long solitary bike ride or something of the sort, but no matter, it was important that I did something.

And then I started running competitively…and each birthday I really didn’t care what happened, as long as I was given free reign to start running and not stop until I felt finished, without obligation, without concern, without timeline. Just running, completely free. That’s honestly all I wanted, but the last couple years I wanted to take it even further. I wanted to do the whole “run your age” thing, in part because I wanted to shove the cultural expectations of aging back into our culture’s face. I wanted to show that at 35 or 36, I could go out and run an exceptionally long number of miles at a quickened pace without concern….just because I could, because I built my life to do so. I wanted to be the example that growing older doesn’t mean giving up, that it doesn’t mean growing heavier, that it doesn’t mean grabbing your gut and making bacon and beer jokes….that actually, each year could mean a greater and greater sense of victory. That each year we can run our age, do something epic, and spit in the face of cultural expectations.

So you can understand why I wanted to write a pissed off birthday post this year.

I wanted to rail against cancer for stealing this moment from me, from taking away my moment to shine, even if it was just to myself. I wanted to at least lash back in words for making me consider a shortened mortality, for taking away the strength I had worked so hard to build, for making me wonder if I might even make it to my next birthday.

But you know what, I’m better than that, than giving into this frustration….because on my birthday, I AM strong. I am physically able. And although running as a celebration is still out of the question at this point, I’ve got plenty of strength to still do something completely rad…and that’s pretty huge in my book. As in all physical endeavors, strength is relative, and so in the face of what I’ve gone through since April 23rd, I’d say I’m pretty damn strong at this point to have overcome those repeated obstacles and still be able to live my life as I have.

So today I’m going to get on my bike and pedal for three hours, finishing my first Team In Training fundraiser in preparation for our 100 mile ride in September, and then I’m going straight to the gym to lift my arms and legs into a further noodle-like mess, and then who knows what. I’ll probably eat an animal-free dinner I made myself and just not concern myself with any other obligation, because I’m strong enough to do all that right now, despite cancer taking away my other form of celebration. Instead I’m going to adapt.

And as the true celebration of my existence, my friends and I are getting up super early tomorrow morning, pointing our bikes South and riding 60 miles to Bloomington, Indiana for a solid vegan lunch and then turning around and riding back for a 120 mile day total.

Because when you turn 37, this is how you celebrate, and it feels far better than a night of binge drinking and trying to relive a more youthful spirit.

So cancer, you can keep doing your thing, but you don’t have me yet…and so I’m going to keep celebrating existence to the fullest extent I can manage, and look toward future celebrations all the same.

Do Something Everyday

One of the worst parts about my cancer experience up to this point was NOT DOING ANYTHING. When I was back home after surgery I was so consumed by discomfort and pain management that to focus on any single task was an impossibility. Getting out of the house to actually go somewhere was completely out of the question for a long time and even just having a conversation with friends wore me out after only an hour. Everything was just so difficult and I found myself spending the days counting down the hours until I could sleep away a good portion of it.

Then slowly, but surely, I started to regain strength and made efforts to DO things. Even if it was catching up on emails, writing blog posts or even concentrating on design work, the most important thing was that I wasn’t a lifeless blob. Rather, I was beginning the process of restarting all my systems again, mental, physical, even emotional. Then I took the greater step to even getting out of the house on my own, riding my bike to the coffee shop a couple miles away or going for walks. It wasn’t easy, trust me…not. at. all. But again, I was building and building, and with the help of Vicodin, even getting out for a couple (demoralizing) runs. In all though, whether I was making any huge strides, I was at least DOING something. And that was important to me.

Of course, with me, that is never enough. Just doing something is only a small part of the bigger picture, of having a goal, a purpose, and a measurable trajectory. I can now go ride my bike for hours on end, but without a reason to do so, I’d rather sit at home and watch reruns of New Girl. Don’t worry, I save those as a pre-bedtime ritual now. Now, fortunately, I’m at a state where I can not only DO SOMETHING, but do it with a purpose and have the strength to measure progress. It’s a large part in why I’m riding so much right now (outside of fundraising for Team In Training), preparing for the Century in September, working out the logistics of a backpacking trip at the end of this month, and now going to the gym every day to conduct a strength routine that leaves my arms flopping at my sides like noodles. In a temporary, but measurable way, I’m trying to fight back against the cancer experience. Notice, I’m not saying I’m “fighting cancer”, because I’m not yet convinced doing any of this actually helps, but to rage against the debilitating aspects of the cancer experience, the side effects of chemo, the weakened lungs, the continued pain from surgery, etc. is just as important to me as if I had the ability to fight cancer itself through my actions.

With that said, I succumbed to the notion that maybe I CAN do something to fight cancer directly. Maybe I can activate the systems in my body to turn on cancer and shut off their cell growth process. Maybe I CAN. Maybe there’s just something I’ve been missing. A very small detail.

I don’t know, part of me thinks that idea comes from a place of desperation, or at least frustration, where I’m now physically, mentally and emotionally able to conduct my life at a very satisfying and extreme degree, and so maybe I have the ability to fight cancer itself, do MY part…somehow. But that’s the thing….I don’t know what else to do. And so I succumbed to that idea that maybe there IS something I can do that the doctor’s don’t address.

I was browsing the section in the bookstore where the shelves are full of books addressing the many aspects of cancer. The books about what NOT to say to a cancer patient. The inspirational books about overcoming cancer and living a full life. The books that reject the “cancer industry” and rely on unproven, holistic methods.

Honestly, I don’t know what I was looking for. I was just…looking.

Then I found the section almost overflowing with books about cancer and diet. “Foods that fight cancer.” “What to eat when you’ve got cancer.” And so on. Book after book after book discussing the foods that prevent cancer, that work against cancer when you’ve got it, and the foods that minimize the side-effects of chemotherapy once you’re in treatment.

I started flipping. And flipping. And flipping some more….only to grow increasingly frustrated. Every book said pretty much the same thing and in reading between the lines I got the same message, “Do what you’ve been doing for the past 18 years of your life.”

Eat fruits and vegetables. Use turmeric and cinnamon. Eat lots of greens. Eat garlic. Get plenty of exercise. Engage in an active social life. And so on, and so on, and so on.

Like I said, everything I’ve been doing for the past 18 years. I had the urge to throw the books across the aisle. Thanks. Thanks a lot. I’ve done all this….I’ve done all this for so long, because I know it’s the good thing to do…so why the fuck did I get cancer? Why isn’t that obese, frowning, chain smoking, hot dog eating, miserable person staring at me from across the cafe ridden with cancer? Why isn’t 75% of the State Fair goers shoving shitty foods down their throat facing the prospect of dying far earlier than they wanted to?

I shoved the books back onto the shelf and walked away, internally shaking my head…but not necessarily at the common sense the books were written upon, but at myself for giving into the idea that cancer is a “fair disease”, that it only effects certain people in the population, that it judges our lifestyles.

It doesn’t. As a friend put it to me….”It certainly doesn’t discriminate.” And he was so incredibly right.

I walked away frustrated at myself and dejected at my situation, giving into that idea that I could actually DO something about my predicament, that I could turn this around, walk into the CT scan next week and walk out of the doctor’s office a week later with a NEC diagnosis (No Evidence of Cancer). but I know that’s absurd. I just WANT it to be a possibility. I just WANT to be able to have some agency over what is happening to me right now….and I don’t. Not in the direct sense.

But I’ve moved on. I don’t want to dwell on that reality anymore, because in truth I CAN DO SOMETHING with this predicament, even if it’s not actually TO cancer. It’s at least AGAINST cancer. Or even just the Cancer Experience. And for those of us whose lives have been turned upside down by having to go through the various experiences, this is hugely important, to be able to live in spite of our circumstance, to be able to rebuild our lives and our bodies in the face of these weakening treatments and surgeries.

And so at every chance I can create, I’m trying to DO SOMETHING. I’m taking all these empty hours in my life and filling them with legs spinning over and over and over again as I ride around the city, jumpstarting my cardiovascular and muscular systems, in turn firing up everything that activates my emotional release. Then with the other empty hours after my ride I head to the gym to work on strengthening everything that went neglected while I was distance running, and everything that atrophied after surgery, and everything that will need to be as strong as possible leading back into surgery. And at every meal I’m trying to make the most of my nutritional needs, eating the same cruelty-free, animal-less, diverse and nutrient-dense meals I can create, cutting out excess sugar and continuing to do what I’ve been doing up to this point….cancer or not.

And in the end, that’s what is most important. Not JUST doing something, but doing everything that was my life before cancer, as close to the degree I was pre-diagnosis. Sure, I’m a little weaker in some places, but probably a little stronger in others, and my cardiovascular strength is completely destroyed from chemo, but I’m not breathless. What is most important is that, at this juncture, I feel more myself than I have since this all started. I’ve set big goals for myself and I’m going for them, breaking down and building back up in the process, experiencing the rewards of that whole fascinating process that once consumed my days like I’m making happen again now.

I want to be that example. I want to be that example to others that our lives don’t have to completely stop in the face of diagnosis…until it’s all said and done and we’ve moved beyond cancer. We may be halted temporarily, and the lives we led may seem too far off in the distance to even recognize, but they are there and we can get to them quicker than we thought. We can be that example. We can show others that healthy, active lives are possible in the face of diagnosis and treatment, and so for now I’m going to keep DOING just that. If for no other motivation, that’s what I’m doing it for.

Now excuse me, I have some more episodes of New Girl to catch up on before tomorrow’s ride.