All Systems Stop

This morning I met with my surgical oncologist to follow up about my latest CT scan and solidify plans for the operation going down in 2 weeks. I assumed the CT scan would show little to no change in tumor growth and that we would be pressing forward with the surgery as scheduled, so I was a little surprised to hear him offer me an option. Now, I’ve learned over the past year that no schedule is set in stone and to always expect changes, but after having made the appointment for surgery, get the vaccinations and go through all the little details leading up to the operation, I was definitely a little surprised that I was being offered the option to back out of surgery completely. The reason for this option to withdrawal is rooted in the confusion of both my type of cancer and my positive physical progress since the last surgery.

With each unchanging scan, my oncologists are encouraged and yet confused as to why I’m doing so well. They can point to the benefit of the HIPEC surgery, of course, but they can’t fully admit that chemotherapy is causing this stagnation. They both admit that patients in situations similar to mine “rarely ever” respond to the chemotherapy treatment and the tumors continue to grow, but for some reason that just isn’t the case with me…but they don’t know why. Both oncologists have said, “SOMETHING is working, we just don’t know what.” And so that leaves them in what they’ve also said is “unchartered territory”, and subsequently a plan of action that isn’t marked by defined outcomes. They aren’t sure what they are doing is working or not. That means NOT having surgery is an option.

Not having surgery performed means we would be in a “wait and see” scenario. Because this cancer is so slow growing, we would wait and wait and wait to see if it starts to reproduce rapidly and out of control, necessitating more chemotherapy and, ultimately, another surgery. However, we can also do the same AFTER a second surgery. What the oncologist could tell me with much greater certainty is that my type of cancer has a very high recurrence rate and the likelihood that it will come back even after surgery or waiting it out, is significantly high. I knew this and was prepared for it.

In the meantime, he is encouraged that I am “non-symptomatic”, meaning the cancer itself isn’t causing complications for me. I’m not experiencing intestinal blockages or other organ failures. The only thing that is taking away from my quality of life at this point is the chemotherapy. So the only thing I wanted to know in today’s meeting is if AFTER surgery, will I have to go back on chemotherapy? That is what I undeniably DON’T want. If cancer comes back, or if cancer starts to grow and cause complications…fine…we’ll deal with that. That’s expected. But if I can go a year or two or 5 or 10 without chemotherapy…then I’ll live with cancer. Screw it…I’ll enter the “fastest cancer patient alive” category if I have to. And should cancer come back, THEN we’ll deal with it.

Fortunately, my oncologist didn’t disagree. He also felt that a life without chemo would be best and that my medical oncologist will most likely agree that we should try the “wait and see” approach after surgery. To reaffirm my confidence in this approach, I outright told him that if we have to “experiment” through this process, I’m completely on board. Ultimately, what do I have to lose? If, by chance, chemo is NOT actually keeping my cancer at bay and it’s something else, than I want to try take that chance. And if we find out that, for whatever reason, I am responding to the chemo….then we go back on it. It’s that simple.

That still leaves the consideration about the immediate surgery on the table though and I had to make that decision. It didn’t take me long to decide, however, and before he left the room I committed to carrying through with the operation. Basically, I still fully expect cancer to come back sometime down the line and I can only hope that it’s VERY FAR down the line, but time…and strength…is truly of the essence here. Let’s say I wait out the cancer at this point and see if it comes back, only to have it cause severe complications in 5 or 10 years, that means my body is most likely 5 or 10 years compromised. I don’t want to risk undergoing this extensive surgery on compromised terrain. I’ve been building up and trying my best to prepare for this surgery, to make sure i’m ready to recover as quickly as possible, and so I feel my best bet is to undergo the operation as soon as possible, with a body that is as primed as it can be in this state, in the hopes that recovery will be quickened, cancer will be minimized and I can spend the next 5, 10, 15, etc. years free from complication and chemotherapy.

And then if I have to do it again…then I do it again.

But for now, I’m relying on developed strength and the hope that this surgery will offer me a chemo-free life much further into the future.

I want to run freely again. I want to go through the surgery, recover, avoid chemotherapy and slowly build until I’m running unhindered for as long as I possibly can, reaching for goals set previous to diagnosis and seeing how close I can get to them…one more time.

And that’s the plan. Despite the options he gave, my surgical oncologist agreed with my perspective, felt now was the best time to do surgery and promised he would do his best to get as much of the cancer out as possible…and then we’ll wait and see. I’ll go through CT scans every so often in order to keep tabs on the growth, but as it stands, we are not going to pursue chemo treatment after surgery (aside from the treatment that is part of the surgery itself). But hey…plans change.

To give some specifics, the surgery is the same as last time. A debulking process with the HIPEC treatment, possible spleenectomy, possible bowel and colon resection and partial stomach removal. The additional fun, however, (aside from the potential organ removals) will be a few days of continuous chemotherapy drips through 5 tubes left within my abdominal cavity. Then follows the long, unpleasant process of recovery.

With a hopeful trajectory.

Now it’s one week of vacation with my son, one more week of preparation leading up to the More Fire Run and then all systems go…or stop…whichever makes the most sense.

Needs and Necessity

A friend recently informed me that her mother was diagnosed with a form of cancer and wanted to know, from the patient’s perspective, what is most needed in a situation like this. I remember right after my own diagnosis many people coming forward and asking what I needed, but everything happened so quickly that I didn’t know how to answer. Turns out, there were needs, but I just didn’t know what they were. Those needs were to arise later, after surgery. In the moment, however, I didn’t really need anything I thought. I was physically able, mostly, and just had to run out the clock until surgery, occupying myself with one thing or another. Soon, though, I did need something. Time, space and freedom. I needed the time to figure out what just happened to me, what was going to come and how to handle it all. I needed the space to sit with myself, to sort through my thoughts (often through this blog) and pull from all my previous experiences to find my way through the emotional darkness of it all and find stable ground. Most importantly, I needed the freedom to handle things my own way. I DIDN’T need advice. I DIDN’T need “cures”, “god”, or anything else people wanted to hoist upon me in the moment. What I needed was complete acceptance towards my own way handling my diagnosis. That was all before I got split in two though.

After surgery, I needed much more. I needed the food others cooked for me. I needed comfortable space to lie and recover. I needed, surprisingly, a LOT of quiet. Just normal conversation felt abrasive and I could only withstand about an hour of it before I needed to retreat to my own sort of sensory deprivation environment. But then, I started to get better, and yet, still needed that same sense of freedom to find my way through the stresses. The dynamics of the cancer experience are so continuously shifting that I needed that freedom to adjust and compensate for all the changes. I didn’t need a rigid path of recovery or expectations placed upon the timeline of my life. I didn’t need to get a job as soon as possible, or push myself physically, or anything that others felt I needed. I needed to be comfortable with every decision I made.

And this is what I told my friend, “Ask her what she needs.” Because it may be nothing, or it may be a lot, but it must be trusted that the patient knows best.

Now, in my situation, again counting down the days to my coming surgery, I need that same freedom to prepare..in my own way. And right now, my preparation involves running…as much as possible. Others have expressed their concern with my physical efforts, pushing myself and stressing my systems while cancer and chemo still enact their deteriorating processes on my body. From the outside, I understand why others feel rest is best…but I think they are wrong, on a number of levels. Cancer and chemo are about weakening the body and so it’s a strong body, a “strong terrain”, that is needed to fight back, against both. Then there is the complete destruction that is the surgery I will undergo, and the last thing I want is a weakened body that will deteriorate quicker, with less muscle to waste, with compromised systems that can be ravaged by weeks of passive rest, and a terrain ripe for infection.

And that’s why I’m running right now. I’m trying to get as strong as I possibly can, through the way I know best. I want to be as primed as I can before I’m completely wiped out, knowing that I did everything in my power to hold off the deterioration, to gain even one more day of reserved strength, so that when I’m able to get up and moving again, the recovery will come that much quicker.

“Use it or lose it” is often repeated in running culture, because that’s how the body works. We push and push and push for physical progression, running day after day, week after week, month after month, year after year to reach our individual goals, but the ratio of building to breaking isn’t fair, and as soon as we go sedentary, so do our bodies. Within just a couple weeks all that work we built to the point starts to slip away, and by three weeks we’ve lost a significant portion of that work. A month off and it feels like starting all over again. There is a lot of truth to the “use it or lose it” sentiment, but recovering after so much time off comes back quickly as well. Our body remembers.

And so I’m counting on my body to remember. I’m counting on my body to remember what it is to recover after surgery, and I’m doing that through physical progression, through running. The last thing I need to do is rest. Pretty soon I’ll be resting for weeks and months, weakening and weakening until I get start making forward progress again.

I leave Friday for Ocean City, New Jersey, my own running mecca (out of circumstantial necessity), where I run the boards every summer. I absolutely love it. Last year I wasn’t strong enough to run and resorted to riding my bike up and down the coast, but this year I’m strong again…strong enough, and so I want to make the most of it. This is marathon for the year. This is what I feel like I’ve been working towards, to again experience the joy and exhaustion of early morning runs along the boards next to the beach, with no other care but to finish the distance. And if everything goes well, I hope to get in one 20 miler to finish the week, as a last hurrah, before I come home and prepare for surgery, to not run for months and months and months. Ugh.

I know some would not like me to press myself so much. I know some want me to rest, to relax, to prepare for surgery by…well…preparing for surgery, I guess. But here’s the thing…that’s not what I NEED.

I know what I need and right now I need to run. For more reasons than just physical strength, I need to run more than anything else right now. So that’s what I’m going to do.

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Speaking of running, the More Fire Run will be held on Sunday, August 10th (the day before I go in for surgery). It would be awesome if as many of my friends (that’s you) could come out and join in on the fun that day. Click the image at the top right to get the details.

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Finally, when I get knocked out by anesthesia on the morning of the 12th, I’ll be out for days. Some of those days I’ll be kept alive by machines, but when I come to, it would be awesome to see what running fun I missed. If you feel so moved, feel free to hashtag #morefirerun on your running photos that day, so I can wake to images of friends out enjoying life and give me something to escape to instead of focusing on the hospital environment. Thanks.

Stuart Scott’s Jimmy V Perseverance Award Speech

I don’t need to say anything else…I can just replay this again and again.

I Wouldn’t Trade You

I can’t help but read cancer stories when they come across my social media feeds. It’s what we, cancer patients, do. We’re primarily searching for a couple things.

1. Treatments or lifestyle patterns that may lead to a favorable diagnosis down the line.

and

2. Conclusions of the story. We want to know if the person died or lived.

The first consideration is more a matter of practicality, and a healthy dose of wishful thinking, various degrees of desperation and blind hope. The second is…well, our biggest concern. Admittedly, I didn’t think reading about a patient’s unhappy ending would affect me as much as it does, but watching the little bits of my sister’s passing…I know how awful it is. And I don’t ever wanna go there, so when someone’s story brings them to those months of rapid deterioration and everything that comes with it…I can’t help but feel dejected.

Then there are the other stories…which fall into 2 categories. There is the ultimate NEC diagnosis, No Evidence of Cancer, that every patient wants to reach. Then there is the patient surviving cancer and living a full, rich and rewarding life despite the blackened cloud hanging precariously close. Again, I’ve found it surprising how uplifting these stories have been for me. To see others reach that NEC moment, continues to prove the possibility that others of us might find the same. It’s not always a losing proposition, and the more NEC and “thriver” stories out there, the more we think our chances aren’t so fragile.

I’m ashamed to admit though…I don’t always have such a positive reaction to these success stories. Lately, I’ve read of cancer patients living through their cancer experience with great comfort, managing their treatments, and essentially living the same lives they did prior to diagnosis. The emotional weight may be ever present, but their physical lives are relatively unchanged. They can work. They raise their kids. They go on vacations. They continue being physically active.

And that hits me hard.

At first I thought I was angry at their stories. Then frustrated. But then I realized…I’m jealous. I’m jealous because I read these stories about cancer patients surviving with their disease for 5, 10, 20 plus years as more of a minor inconvenience than a definitive physical complication, and I’m jealous because they got to keep their previous lives….and I didn’t.

I’m jealous because I’m a runner, and the combination of cancer and chemotherapy doesn’t allow me to be the runner I once was. To some degree, I can run with as much effort as I once did with cancer at it’s earlier stages…but it’s not the same with chemotherapy. I simply can’t hold on to the running life I had prior to diagnosis while going through treatment. So I can’t help but harbor a degree of jealousy towards these other survivors. I only wish my life could be the same. But it’s not.

I’ve hit the wall. But my wall is different. I’m up against the wall of drugs. I have so much ambition to run as much as possible right now. I’m not restricted by my body or motivation in any ways…it’s the drugs that are holding me back. I can only run so many miles before the blisters from hand and foot syndrome become too many, too problematic. I can only run so many miles before the neuropathy in my toes causes me to sustain injury from an altered gait. I can only run so fast before the decreased amount of red blood cells necessary to deliver oxygen to my legs and lungs begins to push back. I can only take so many deep breaths with periodic blockages in my intestines from a compromised digestive system and all the other fluids sent through my body during CAT Scans and infusions.

I’m just not the same. No matter how hard I want to push myself, while I’m going through treatment, I will never be able to reach the previous runner highs I sustained before. Until I’m off these chemicals, I will not be the person I was before diagnosis, I will not get back my old life.

So I’m jealous, when other patients get to experience cancer as an annoyance and go about their business.

But you know what…I wouldn’t trade them places. I know what I was and I know what I can still be when the poisons finally leave my body…whenever that is. I would never trade the abilities that lie dormant somewhere deep within me, for a different experience of cancer. I’ve never lost sight of my place among others going through similar times of adversity. I’m INCREDIBLY fortunate to be able to do what I can, to be holding cancer at bay, to be entering surgery again, to be as active as I am when others are doubled over from nausea, weakened from the toxicity, and bed-ridden from fatigue. I have been them, and will probably be with them again post-surgery…but only temporarily.

Because I’ll be rebuilding again, trying to get stronger and stronger, back to running, and if all goes as best as we can hope…with No Evidence of Cancer. And then I can finally get back to the life I had previously, that is as full, rich and rewarding as it can possibly be. No restrictions. No chemicals. No boundaries.

Believe me, I dream of that day. When I feel the ground beneath my feet, through my heels, the forefoot, and each and every toe. When I feel my lungs breathe easy, and my pace rise higher and higher without effort. When the pains around my toes dissipate to nothing. And I can run, with no other thought except running.

I’m envious and jealous of those stories now, but soon I hope to only be focusing on my own again. 25 days till square one.

The Great Process

There’s a point along any path of adversity where one has to come to terms with their situation, where they must accept what is happening and reconcile their situation. In running, we do this often. We enter into a run, or a race, and when things start to go South, we are forced to face the reality of our struggle and make a number of decisions as to how we plan to keep moving forward. Or maybe we stop. That’s an option too. The one constant, however, is that the reality hasn’t changed…only our reaction to it.

In the face of this honest, unchanging, physical struggle, there is no manner of delusion. We can’t tell ourselves we aren’t hurting. We can’t believe our lungs aren’t beating out of our threshold. We can’t wish away the burning in our quads. We can’t will strength back into our legs. The only option is to face reality, accept the circumstance and keep pressing on.

Yes…this is a metaphor.

From the moment of diagnosis, I took this approach. The difficult facts were placed in front of me and I had to react to them. Then throughout this relatively changing experience I had to continue to react, whether that was succumbing to the emotional darkness or pushing myself to feel the sense of accomplishment, success and physical reward I knew pre-diagnosis. I tried most often for the latter. And yet, that was mainly the physical response to cancer, surgery and chemo. There is always the other reality hanging above…the ultimate question…the “why” of it all.

As a conscious animal, I’m never above this consideration. I’ve never once stopped considering why my body started cancering. I’ve thought about environmental influences, inherent genetic mutations, dietary choices, stress factors and any other physical realities, not because I felt I would come to one undeniable conclusion or another (hell, the researchers barely know what’s going on), but because I have this human need to explain my circumstance, to reconcile this physical reality. And to help guide my response, to make the decision on how to proceed….whether I dropped out or pushed myself to the finish.

Throughout this experience the considerations haven’t changed too much, and the reasons for my cancering have remained as elusive as they were from the start, but I did ultimately find my way to some point of reconciliation. I “made peace” with my cancer. I’ve heard this phrase used often. Annoyingly, it’s been retold to me as a way of getting rid of my cancer, as stories have circulated where patients said to themselves, “I’m ok with you cancer, you’ve run your course, and now it’s time to leave,” and then their body stops cancering. Good for them. But, yeah, it’s not like that. Still, I made my own peace with the cancering inside me…and it has helped me keep pushing, looking further into the distance for that finish line.

I believe in our physical reality. I believe in what our senses can experience. And I don’t feel there is the need to believe in anything that hasn’t been shown to exist within our senses. What this means for me, is that I believe in the impossibly complex circumstance of our existence, that we are physical beings, perfectly imperfect, evolving, and part of a continuous physical process. In short..

We are not special.

We are “life”, in the same way we define algae as being “alive”, as we define sea anemones as “sea life”, as we define the changing weather as “alive”, as we know bacteria to be “alive”, as we understand the parallels with all non-human animals as “living”, as we understand the atmosphere to contain “living” substance, as we recognize the earth to be organic. From our place in the expanding universe, to our place in the solar system, to our place on earth, to our place as individuals, to the microorganisms that live within us, to the microscopic cells that comprise our being….to our physical connection to everything around us, we are alive, and we are not special.

We are a process.

We are physical elements coming together, creating the mechanisms that brought about our existence. We are the functions of evolution that are constantly changing, shifted by environmental stresses, weather patterns, fluctuations in light and dark. We are the waxing and waning of various factors that cause sickness and health, checks and balances, cold fronts and warm fronts, night and day, tides high and low, and the totality of that PROCESS. We are simply individual actors in a process of back and forth, imperfect development, periodic regression, periodic advancement…of living and dying.

And somewhere in the middle of all that is my place in this physical process, my consciousness just a blip in time to understand it all, and my body trying to cancer out of control. Because there is no reason for it not to. I am not special. I am perfectly imperfect. I am just a part of something greater than we will ever be around long enough to understand. We only have this short time to come to terms with this unbelievable process. This process that has brought us to this state of consciousness, this ability to understand, this accumulation of knowledge….that will someday be wiped clean…with nothing left for anyone or anything to remember us by. We will essentially never have existed.

And somewhere in the middle of all that is my cancering. Somewhere deep inside of me a fascinating process is taking place, a reproduction of life…that just so happens to feed upon my own isolated ecosystem in order to remain alive.

And I respect that.

As we pull from the earth, cancer pulls from my body. As this greater physical process adjusts to uncontrolled environmental stresses, I attack my cancer cells with defenses of my own. This undefined physical process is a push and pull, a battle for resources, an unconscious act of survival. This cancering within me is no different. It is the greater physical process, just on an individual isolated scale. As an individual human that competes for resources in the world, acting to further my own survival, sometimes at the expense of others…the cancer within me does the same. The nation outside of me does too. The forests do as well. The earth too. And in ways, each part of this process acts upon the other. Disease “controls” the population in various ways, with different outcomes, creating tensions on the environment or alleviating them. From universal to microscopic….we are but a PROCESS.

It’s hard to convey…but that gives me comfort. To feel this survival mechanism playing out within me, a microscopic example of this more massive process that takes place all around me, whether between tribes, ecosystems, or planets…is comforting. It gives me peace.

I don’t hate my cancer. I don’t give my cancer subjective human characteristics. I don’t shake my fists at the skies. I hardly admit to cancer anymore…I only recognize cancering. I recognize a process. And I feel a connection to the totality of existence, to the most fortunate chance and circumstance we could every try to imagine. And I am at peace.

Then I try to figure out how best to stop this process.

Because I am a part of all this, the same inherent survival instinct flowing through me as the one that flows through the birds, the snakes, the insects, the flora and fauna, the amoebas, the bacteria, the inhaling and exhaling process of our entire ecosystem. So I flood my body with killing chemicals. I let my body get split in two and partially hollowed out like scraping seeds from a melon. And I build strength and fitness as best I know how, by putting one foot in front of the other, continuing my own process of survival against the cancering’s attempt at it’s own.

I am reconciled to this fact. I am reconciled to this reality. I am reconciled to this push and pull with my cancering body…and although I am at peace…I must still make that next decision.

I must decide whether I give in to the cancering or if I play my own part in this greater process, and how. My decision is not veiled. I’ve chosen to remain at peace with my circumstance, but push forward against a compromised body, against the chemicals that flood my veins, against the medicines that break me down…and keep running towards the finish.

To reconcile ones circumstance, to accept the reality of an obstacle or adversity is the first step, however we choose to find that peace, but then we must take that next step, and then the next, and then the next. That’s the hard part. Each month, each week, each day…sometimes each hour…can present a new obstacle in this cancering process, and no matter what peace we have found in adversity, we must keep moving past these obstacles, to play our part in the greater process of survival.

My next obstacle is the second HIPEC surgery on August 12th, and I would be lying if I said I wasn’t concerned. I may have made peace with my cancer, but the physical deterioration I’m about to experience again is anything but peaceful…it’s also an unavoidable necessity if I’m going to continue playing a role in this process.

But this is nothing new. I’m a distance runner. I know struggle. I know physical weakness. I know what it is to start and what it is to finish. I know, more than anything else, that this is a process. And this next obstacle is an incredibly important part of the process needed to make it across the line, to survive to the end. Believe me, I’ve made peace with this process, but that doesn’t mean I’ve given up. It means, more than anything, that I plan on being a part of this greater process of life for as long as I physically can. Whatever it takes.

Runner’s World Cover Contest

I don’t often engage in things like this, but Runner’s World is holding a “Cover Contest”, part of which involves gaining votes on entries. I’ve put myself into this contest in hopes of using my cancer experience to give mention to a handful of organizations that do good things for running and cancer, and to lend inspiration to others who might find themselves in a position similar to mine, or to at least “prove the possibility” that one can create a valuable and rewarding life in the face of great adversity. With that in mind, I’m asking your help in doing one or both of the following:

1. Vote for my entry here – http://covercontest.runnersworld.com/entry/415/

and/or

2. Share the above link on your social media forums (FB, Twitter, Email lists, etc.)

I’ll get back to putting up more typical entries soon, but I’d really appreciate your help with this request in the meantime. Thanks friends!

Battling Cancer

If I have my own “battle against cancer”, this is it.

In the past year and two months I went from being kept alive by machines for days,
to struggling to sit up,
to sitting in a chair,
to walking 10 feet,
to walking down the hall,
to walking around the hall,
to walking 13.1 times around the hall,
to going home,
to walking on the treadmill,
to walking on the treadmill with an incline,
to intermittently jogging on the treadmill,
to jogging on the treadmill,
to walking to the grocery store and back carrying bags of groceries,
to riding my bike 2 miles,
to riding my bike 10, 20, 30, then 50 miles,
to taking vicodin so I could run 4 miles,
to riding my bike every day,
to riding my bike as a fundraiser,
to riding a century,
to running the trails in BCSP,
to running the roads,
to running the treadmill consistently,
to running in the Adirondacks Ragnar,
to running trails consistently,
to running a workout,
to running a race,
to racing a race,
to winning a race,
to running workouts consistently,
to running so much that I ran into an “injury”,
to running into this month where I stop taking chemo pills and have my 19th and last infusion,
to running relatively free for the next 30+ days….

To being kept alive by machines for days.

And then we start all over again.

If I’m “fighting cancer”…this is how I’m doing it…and I’ve not lost any strength for the next battle. If anything, I’ve gained that much more fire.