Monthly Archives: March 2014

A Second Wind(fall)

Today was the second follow up appointment with my surgical oncologist, almost one year since diagnosis (April 4th). My dad came with me as has been the routine from day one. Prior to the meeting I expressed my expectations to him, how I assumed my doctor would have looked at the recent scans and will simply tell us that surgery is not an option. Very matter of factly. Straight forward. Then send me on my way to continue my ceaseless routine of chemotherapy infusions and pills, just waiting for the cancering process to either give up or find a loophole to exploit itself out of control. I was emotionally prepared for this.

As is protocol, we sat in the exam room with the doctor’s “Fellow” who briefed us on the matter at hand, getting his practice in before the doctor took over. I’ve learned not to put much emotional stake in what the Fellows tell me, as their knowledge of my predicament is both secondary and very limited. They often read my file, it seems, moments before they meet me. This fellow, fortunately, seemed a little more knowledgeable of my situation and did a decent job explaining the potential for follow up surgery and what this might mean for my life, but to be totally honest, i’ve retained very little of what he actually said. I do remember one quick exchange that went like this,

“So, how long is Dr. Gupta giving you chemotherapy?”

Me: “Umm….indefinitely.”

“Oh. So forever.”

My entire insides cringed at his inadvertently unsympathetic phrasing. “Forever.” I thought to myself,

“Come on man…let’s use a different term. I mean, I’m going to die SOMEDAY, so I won’t have chemotherapy FOREVER.”

Admittedly, if there was such a thing as hell (don’t worry..there isn’t), a lake of fire would probably be far preferable to an eternity of chemotherapy. The “Good Book” needs a little updating to it’s disincentives.

Anyways….after the Fellow left, I felt a little dejected, staring off into nowhere and waiting for the sense of dread to pass, the realization that if a surgery does take place…it’s probably just one of many, and so I was left with a lot of questions.

A few minutes later my surgical oncologist walked in, a man who I greatly enjoy, despite our brief interactions. He is pleasant, energetic, kind, genuinely positive and hopeful…and still wears bow ties. Of course, cancer doesn’t care about any of that, so I wasn’t sure how HE was going to convey my options, despite my previously stated assumptions.

He walked in, exchanged greetings, and then before he even made it to sit in his chair he said,

“Well, you’re a tough one! I’m VERY PLEASED with what I’ve seen.”

He continued to offer praise regarding my situation, how I’ve responded to the surgery, how I’ve handled the chemotherapy, how my CANCER has responded to the chemotherapy in that it has held steady. It’s a lot of what I’ve heard before. That my cancer isn’t growing, although it’s not shrinking. He also commented on my physical appearance, that I look good and have gained weight, which admittedly, struck a runner’s nerve with me. I concentrated on my weight for so long, always hovering just above race weight, that adding enough mass to be noticeable doesn’t sound like a GOOD thing to me…though I know it IS a good thing in relation to cancer. Then in more vague terms, he reiterated a sentiment he let on to in the past…that he didn’t think I was going to do very well after surgery.

He expected the worst. I don’t know if he expected me dead by now, but he certainly didn’t expect me to be thriving, or to have a hopeful outlook into the coming years. Mind you, this negativity wasn’t a judgement on my abilities as an individual, but rather related to what he saw when he opened me up. He admitted to being “bummed out” when he went in and actually met the cancer mano y mano. He explained it this way…

“Many patients with your type of cancer have a lot of cancer mucin floating around that can be easily removed, where yours was as if someone poured a bucket of concrete into your stomach.”

That is what caused the problems. It wasn’t that I was ravaged by tumors…it was that my cancer was taking hold in my abdominal cavity and not letting go, severely hampering his abilities to take it out without causing severe organ damage, which prompted the chemotherapy regimen, to hopefully reduce the tumors and make a future surgery easier for him. But then again….he didn’t think a second surgery would be worth it. He didn’t expect me to last this long (I guess) or that my situation would have spiraled out of control. I don’t know….but I do know this…he followed up some of this explanation with this statement,

“I’m going to recommend surgery again.” (and I paraphrase) “I think because you are doing so well, because the tumors are not growing, because you only have a little accumulation of fluid, that we can go back in and take out more. I actually think there is a possibility we can go back in and get all of it.”

Yes, he said ALL of it.

“I’m hopeful that we can get more of the cancer out, to chip away at what was left behind, that maybe the chemotherapy will have worked to a point that it won’t be as difficult to take out this time.”

And so on.

To be honest, I may not have shown it, but I was taken aback. Remember, I was sure he was going to plainly state that surgery wasn’t even a consideration and send me on my way…so to be given so much positivity and encouragement, even a very quickened timeline to get wheeled back into the operating room, well, it took some time to process. IS taking time to process.

The encouragement, the hope and positivity, it was infectious and I had to temper my emotions. I had to stay level. He DID say “ALL of it.” But he also said it with reservations.

So let’s scale back a bit here. If I had to gauge my situation as it stands and everything that was told to me during our meeting today, I would say we are still squarely on the side of losing to cancer, that eventually cancer is what will kill me (short of getting creamed by a car while out bike commuting). The positive side to this is that it’s going to take awhile. If I’m able to continue this trajectory of strength and a relatively high quality of life during this process, that these surgeries will do a great deal to extend my lifespan into the foreseeable future.

My oncologist used the phrase, “Many, many, many years” a few times in our discussion. He referenced other patients with more tumors than myself living 10 years out, some possibly even further because he hasn’t heard from them in so long. This is tempered, however, with the patients that come back every year or every two years for additional surgeries because they are experiencing growth and blockages that are threatening their quality of life and existence, period. But, despite the “bucket of cement” scenario he dealt with the first time, he still feels that this surgery will have SOME level of success and that my prognosis is that I will live many, many years out. Maybe supplemented by chemo. Maybe not. I’m not quite sure about that yet.

There is, obviously, great cause for celebration in this, but I’m not letting go completely, because, to be honest, I have never felt like I was dying anyways. When my body revolted at the last second prior to diagnosis, I didn’t even have enough time to consider that I was on the verge of dying to some degree, because I was instantly pulled into the world of surgery and post-surgery recovery. And through all this recovery and chemotherapy, no matter the problems I continue to experience through the medicine’s side effects, I’ve still never felt like I was dying, like I had a foreseeable end to my lifespan. Hell, I’ve just been looking to when the side effects dwindle to the point that I can start running again.

So, although I’ve never felt like I’ve ever been dying (I’m still in “thrive” mode), I’m bolstered by this idea that, even with the complete destruction I’ll experience through this surgery, I’ll have an indefinite timeline to live through. I’m bolstered by the realization that even if we don’t “get it all” this time, we will have reduced the crowding in my stomach yet again and I can expect…if all goes well…an increased quality of life yet again. I’ve got a second wind, so to speak. I’ve got “Many, many, many years”.

Trust me, I plan to continue making the most of them.

For now though, surgery has been scheduled for August 12th. He initially suggested I go in sometime in May after he returns from an overseas conference, but he explained that because my cancer is slow growing that it’s not imperative like it was last time, that we can wait if it’s easier on my life. And it is. I’m going to take this time to 1. process what is about to happen 2. prepare for the downtime financially 3. establish the life Laura and I are about to build here in Indy and, most importantly, 4. get every day of visitation time with my son this summer. Then after sending him back home, I’ll get wheeled back into that operating room and repeat that complete physical destruction yet again….in hopes of an even greater recovery this time and many, many, many more years of passionate living.

Whew…things sure change quickly. Let’s do this.

More Fire.

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Layers of Discomfort

Cancer is hard to feel through the chemo. I’m often so physically consumed by the discomfort of chemotherapy side effects that I forget about the cancer. It’s there…somewhere…but doesn’t really make itself known. And that’s somewhat scary, because I feel deluded into thinking I’m better off than I might actually be. I have to remind myself that I probably had this slow growing cancer for a LONG time before it really made itself known, remaining highly functional all the way up to the point it apexed.

The chemotherapy, however, doesn’t hide. I should probably talk less about having cancer and more about having chemo, because that is what really prevents me from living my life at this point. I’m keeping an eye on the big picture, but on a day to day basis, the effects of chemo are what I’m really trying to battle. And sometimesit truly feels like a battle, where I try to make advances but find myself being held back.

The best way I can describe the fight against this discomfort is like peeling the layers of an onion.

I pull away one layer of discomfort, only to find another just beneath it. At times it feels like I get rid of a greater discomfort, which allows the lesser one to then make itself known, and I peel that one away to find yet another and another and another. At other times it feels less like exposing lesser discomforts, but instead pulling away one layer only to find a brand new layer growing in its place.

As I try to keep pushing towards that point where I can live my life as close as possible to pre-diagnosis, physically at least, I’m often held back by one of these layers. Each month since surgery I would wait out the pain and make new efforts whenever possible. One month the pain would subside. The next, my headaches dissipated. The next, I regained muscular strength. The next, I could breathe easier. But I could never quite get to that point where all the problems were gone and I could move freely. Each layer was met with another.

And then the chemo started piling on top of itself. The layer of hand and foot syndrome grew thicker and thicker. The layer that had my fingers cracking and bleeding got worse. The problems with my bowels remained..well..problematic. The layer of nausea covered every moment of my days. But slowly, I tried to wait them out and let them fall off, hoping each shed layer would allow me to get back to running.

But that has yet to be the case.

I haven’t given up hope that the discomfort of chemo will finally give way to the delusion relief of JUST cancer. Now that we have taken Oxaliplatin out of my toxic chemical mixture, the layers of discomfort have fallen off in waves. Gone is the nausea. The awful taste in my mouth. The headaches. The hand and foot syndrome. The cold sensitivity. Or, at least, they are GOING. I feel like I’ve gotten very close to the core of discomfort and with one more layer shed I’ll be able to feel relatively normal (“normal”, mind you, being still very unnormal). I’ll still have a handful of physical issues to manage, but nothing that would prevent me from moving freely.

That’s the problem though. Even after all the recent layers have been shed, a layer of neuropathy in my hands and feet have grown in their place. And this neuropathy is just as debilitating as all the other side effects combined. With feet that are “asleep” every second of the day, running is out of the question. Even the pressure of short walks proves problematic and any sustained effort is cut short. I’ve managed to work through the discomfort for 30 minutes on the elliptical (my boredom sometimes outshining the neuropathy) and recently discovered that long bike rides are doable, now that the weather is beginning to cooperate with outdoor activities, but getting to that point of physical ability I so desperately crave is still proving elusive.

I still feel close to that core though, where the layers are so minimal that I can get through it all, where I can run again and just go about my days with ease, not in a constant state of “battle”. I don’t want to fight all the time. I just want to enjoy my days. It’s still not lost on me, however, that I’m significantly better off than most at this point. I CAN be active. I CAN be highly functional. I CAN keep a job and provide for myself. It’s that level of ability that I’m grateful for, but which also keeps me right on the edge, where I can taste that sense of personal freedom, but just can’t reach out and grab it.

Ultimately though, I still believe this is “never forever”, which is funny since neuropathy can be PERMANENT nerve damage. But let’s not even entertain that idea right now. The regenerative timeline for most nerve damage cases runs from 5 months to 3 years, but I’m counting on the healing properties of my body to throw those numbers for a loop. Until then, I’ll wait for this final layer to shed itself and hope nothing else grows in it’s place.

Changing Pace

A 5:30 alarm would often result in a battle of wills, the adventuresome me against the still sleeping me, but this morning’s alarm was met with a prepared energy as I hopped out of bed, hit play on the stereo and found my way to the coffee maker. The night prior, just a few minutes before going to bed, I decided I NEEDED to go to Brown County State Park – my preferred trail running grounds – for little reason more than taking advantage of the weather prior to the coming storm and to experience the environment that has become more a part of me (or I’ve become a part of it) than any other identity I continue to hold. The alarm going off under a darkened sky was intentional, getting me to the park just as the sun would be halving itself on the sea of trees. I was hoping to get some decent photos to share.

The skies had different intentions though and an overcast light dulled the ground. No matter. I made my way around the park to do a little exploring via vehicle, then pulled into the empty parking lot at my favorite trailhead, figuring I’d get in a little hiking. Starting down the trail I found myself experiencing an awkward sensation, of needing to move faster, but held back by an unconscious force, creating a wavering tension in my body. I knew right away, my body wanted to run. It wanted to leap over and crash down upon the trail instead of precariously picking my way over bicycle tire rutted ground. It wanted to breathe heavily, not just inhale and exhale without necessary rhythm. It wanted to sweat and exert and light up the mind like a house on fire, rather than press against tired eyes and a heavily cloaked mind. This was unnatural to me.

Further down the trail I kept walking, my senses waking to the controlled effort, unwillingly brought into an alerted state by the chemo pain on the soles of my feet. I wasn’t sure how far I would walk with my feet in this state, and at this pace, but figured I would know when best to turn back. Here and there I stopped for photos, paused to look around…and began to notice something. Or things. Little things.

Details.

I saw bits of green foliage struggling against the carpet of dead leaves and broken twigs. I saw hallowed out tree trunks big enough to squeeze an adult body inside. I saw accumulated scrapes from mountain bike chainrings upon rocks unlucky enough to be embedded in the center of the trail. I saw trees uprooted far above, yet broken across the worn dirt below. I saw dangerous drop-offs. Cliffs just mere feet from the trail, where a rolled ankle and a tumbling body could easily end up in death.

I saw all this, newly, because I had never seen them before…despite running these trails over and over again, tallying countless numbers of miles. The difference this time was pace, a painfully slowed pace that allowed my eyes to rest on the details in the forest, to survey wide swaths of the area, to concentrate on abnormalities amidst the foliage chaos that I once ran by in a blur.

I had never walked the trails at this pace, and so had never absorbed this manner of understanding, and even appreciation, of the forest’s nuances. All my running on this stretch of woods was..well…alawys running. Fast. Very fast. I couldn’t look out into the woods, gauge how far a hillside dropped, and not worry about a misstep that tumbled me to the ground and ended my run. I couldn’t notice the stories of scrapes on rocks as I leaped over looking for stable dirt. I didn’t see hallowed out tree trunks, signs of spring, or any subtle change in foliage as everything became blurred in my peripheral vision, my focus resting squarely and only on the 5 to 10 feet of dirt stretching out before my spinning legs.

My pace was about effort and stability, not sight-seeing.

I pondered this a bit on my hike and realized the same change of pace occurred in my life as well. I went from walking a tightrope of responsibility, speeding through each day’s accomplishments, to being pushed into an operating room just a few weeks after diagnosis. My life went from a record setting marathon, a downhill stretch of trail, to a glycogen depleted, rolled ankle stop without warning. Suddenly my slate was wiped relatively clean, and where I had to speed through each day’s obligations – run, eat, commute, work, eat, prepare, sleep – I was left stunned, halted in my tracks, physically immobile. My greatest effort was counting down the hours until I could take my next pain pill.

And then, I could stop and look around.

I started noticing things in greater detail. I saw attitudes, both destructive and exemplary. I saw life intentions and the need to pursue them without abandon. I saw honesty, encouragement and friendship. I saw the value in stripping away greater and greater amounts of excess. I saw so many wonderful details, but also, like a discarded soda bottle or broken toe clip left in the woods, I saw a lot of sadness and desperation too.

But without being forced to slow down, I might not have seen them in such focus. I knew they were all there, but as i sped through each day, it was hard to focus on each one and evaluate it’s value in my life. Now, with a pace still dictated by the toxic meds flowing through my system, I see the details I was missing and am better able to let in the positive influences and keep out the negative ones. This change of pace, no matter how much I once resisted it, is infused with an immeasurable, affirming ability.

But…It’s not that simple. Just as we can’t always run through life, we also can’t always walk.

There was something else I noticed on my walk today. I was missing out on a unique EXPERIENCE. And it is that experience that always brought me back into the woods, despite the darkened skies, despite the weighted legs, despite the 5:30 alarm. When I was tearing through the woods, unable to focus on the details around me, I was also leaping over rocks, pumping life-giving oxygen into my mind and body like a high-powered machine, powering up hills with complete abandon, feeling the strain and relief exchange in my body like waves, igniting my mind like the sticks of dynamite that set the house on fire. The experience of running, absorbing myself in the environment this way, triggers a complete mind-body connection that is unparalleled, that although speeds me past the nuances hidden amongst the forest, also affords me a different way of understanding and appreciation that not everyone is privileged to have. It takes a certain pace to get there.

Of course, every run is exhaustive, and at some point we must walk. We must slow down. We must change pace. And that is what I came to understand today…that our lives are most valuable when we avoid the confinement of extremes, when we seek out the excitement of experience, but also look for the subtleties and details. There is a great understanding and a great appreciation developed when we live with abandon, but also with restraint. This, mind you, is not calling for a middle road life of safety and uneventful boredom. Goodness no. I suggest you DO live with abandon, pushing your comfort levels, dabble in danger…but don’t stay there, in that state of stress and tension. Look for those quiet moments too, where obligations are invisible, influences are absent and sleep comes easily….just don’t stay there, comfort to the point of stagnation.

There is so much to understand in existence, and just as much to appreciate, but it will take moving at all speeds to take the most in. Explore the world at your own pace, but change it enough to see what else you might find.